Committee Meeting
of

ASSEMBLY HEALTH AND HUMAN SERVICES COMMITTEE

and

ASSEMBLY REGULATORY OVERSIGHT COMMITTEE

Assembly Bill No. 2849
(Limits use of restraints in individual habilitation plans for persons with developmental disabilities)

Assembly Bill No. 2850
(Requires training for staff working with persons with developmental disabilities; appropriates $2,104,740)

Assembly Bill No. 2855
(Establishes "Matthewís Law Limiting the Use of Restraints")

Assembly Bill No. 3108
(Requires DHS to place persons as monitors in facilities for developmentally disabled

under certain circumstances)

LOCATION:

Committee Room 11  State House Annex Trenton, New Jersey

DATE:

January 16, 2003
12:00 p.m.

 

MEMBERS OF COMMITTEE PRESENT:

Assemblywoman Loretta Weinberg, Chairwoman
Assemblyman Herb Conaway, Vice-Chairman
Assemblyman Jerry Green
Assemblyman Gordon M. Johnson
Assemblywoman Nellie Pou
Assemblywoman Joan M. Quigley
Assemblyman Samuel D. Thompson
Assemblywoman Charlotte Vandervalk
Assemblyman William D. Payne, Chairman
Assemblyman Joseph Cryan, Vice-Chairman
Assemblywoman Nilsa Cruz-Perez
Assemblywoman Connie Myers
Assemblyman John E. Rooney

 

 

ALSO PRESENT:    

David Price   

Wali Abdul-Salaam Tasha M. Kersey
James F. Vari  Gabby Mosquera Thea M. Sheridan
Office of Legislative Services Assembly Majority Assembly Republican
Committee Aides Committee Aides Committee Aides


                                                     

Meeting Recorded and Transcribed by
T
he Office of Legislative Services, Public Information Office,
Hearing Unit, State House Annex, PO 068, Trenton, New Jersey

ASSEMBLYWOMAN LORETTA WEINBERG (Chairwoman):

Good afternoon, everyone.

As you know, this is a very crowded room with a lot of people who

wish to testify, so I hope you will use as much decorum as possible. Please keep

the noise level down back there. There are empty seats up here. I would suggest

that people get out of the aisles and the doorways there in case we have to close

the door, and please come and sit in some of the empty seats that are here.

This is a joint meeting of the Assembly Health and Human Services

Committee and the Assembly Regulatory Oversight Committee. No wonder I

canít remember it all.

Welcome.

Before I make any statements, I would ask, on behalf of the

Assembly Health and Human Services Committee, David, would you please call

the roll?

MR. PRICE (Committee Aide): Assemblywoman Vandervalk.

ASSEMBLYWOMAN VANDERVALK: Here.

MR. PRICE: Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: Here.

MR. PRICE: Assemblywoman Quigley.

ASSEMBLYWOMAN QUIGLEY: Here.

MR. PRICE: Assemblyman Johnson.

ASSEMBLYMAN JOHNSON: Here.

MR. PRICE: Assemblyman Conaway.

ASSEMBLYMAN CONAWAY: Here.

MR. PRICE: Assemblywoman Weinberg.

ASSEMBLYWOMAN WEINBERG: Here.

2

MR. PRICE: Quorum is present.

ASSEMBLYWOMAN WEINBERG: Thank you.

Assemblyman Johnson is a very able substitute today for

Assemblyman Edwards, who is not able to be with us.

Would you like to call the roll, please?

ASSEMBLYMAN WILLIAM D. PAYNE (Chairman): Weíd like

to have the roll called for the Assembly Regulatory Oversight Committee.

MR. VARI (Committee Aide): Assemblyman Rooney.

ASSEMBLYMAN ROONEY: Here.

MR. VARI: Assemblywoman Myers.

ASSEMBLYWOMAN MYERS: Here.

MR. VARI: Vice-Chairman Cryan.

ASSEMBLYMAN CRYAN: Here.

MR. VARI: Chairman Payne.

ASSEMBLYMAN PAYNE: Here.

Before we go further, Madam Chairlady, I just need to make this

announcement. We have been advised that the capacity of this room is 100,

and that thereís going to be a need for us, when we reach that capacity, to close

the door and not allow anyone else in. And that is because of fire regulations,

no other reasons, no legislative reasons at all. So weíre going to ask you for

your cooperation. We have a uniformed officer here, and others, that will help

us to keep the room -- in that area. We may be able to have a little bit of a

flexibility of, maybe, a few over that. But the room capacity is 100, and we

need to have people cooperating so that we will not have any hazardous

conditions. Many people here are in situations where they may need to have

egress easily. So, if you will cooperate with us, we would deeply appreciate it.

3

ASSEMBLYWOMAN WEINBERG: Okay. Iím just going to lay

a little groundwork, if I can, for some of this. Assemblyman Payne, on behalf

of the Assembly Regulatory Oversight Committee; and the members of the

Health and Human Services Committee; as well as Assemblywoman Previte and

some members of the Family, Women and Childrenís Committee have been

involved for quite some time with trying to improve treatment for the most

vulnerable in our population, and that is treatment for developmentally disabled

and brain injury. In the course of finding out about the issues surrounding that

treatment, what became apparent to us is that some of these issues are around

the use of restraints, how they are used, how they are applied, what type of

emergency methods need to be used in order to protect the person being

restrained, as well as any person around them that they might cause injury to.

For that reason, this hearing particularly concerns the use of

restraints. We have two bills up that talk about the rules and regulations

involved with how an institution or a group home can apply restraints to the

vulnerable population that they care for.

One of the bills is A-2849, which is a Previte/Weinberg/Payne bill;

a second is Assembly Bill No. 2855, which is a Munoz/Gregg bill, and then we

have a Committee Substitute, in which, with the help of our staff -- and Iíd

particularly like to thank Meredith Schalick for the work that she has done in

research on this issue. We have come up with a Committee Substitute, which

I understand has been out there. It has been distributed, so there are many folks

who can see it. We think it combines the best of both bills. Those are the first

bills weíre going to call for testimony.

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Your comments -- because we have many people who wish to testify

-- are limited to five minutes. Gabby, who is sitting in the front -- raise your

hand so everybody knows who you are -- has a timer. You will be warned when

you get to the two-minute and then the one-minute time limit. We are going to

cut you off at five minutes. Thereís no 30 seconds beyond that. We have too

many people from which to hear, and we would like to hear from as many of

you as we possibly have time. So, please, limit it, and limit it to the bills that

are on this agenda. That is, the restraint bills that I just outlined, the

Committee Substitute, and then we will go into the two other bills --

Previte/Weinberg/Payne bill, which requires training for staff working with

person with developmental disabilities in the use of restraints; and the last bill,

which is a Weinberg/Johnson bill and requires the Department of Human

Services to place persons as monitors in facilities for the developmentally

disabled under certain circumstances.

Right now, we are going to just deal with the restraint bills. So, if

thatís what your comments are about, please keep you comments on that issue

-- the two restraint bills, as well as the Committee Substitute.

So thatís the framework and the ground rules.

Do you want to--

ASSEMBLYMAN PAYNE: Just as Chairwoman Weinberg has

stated, we have spent a lot of time, a good deal of time, on trying to come up

with that kind of legislation that will, in fact, be fair and be effective for all the

clients. You can be sure that all the members of these Committees are

concerned about providing the very best for the citizens of the State of New

Jersey. There are differences of opinion. There are people on both sides of the

issue. There are those who have various views. We want to ask that you

5

respect each otherís opinions and respect the work that weíve been trying to do.

Keep in mind, always, that we have the interest of the citizens of the State of

New Jersey at heart, as all of you do, too.

So your comments will be considered for after we have this hearing.

Whatever comments youíve made will certainly be seriously weighed when this

hearing is over. I hope that we will be able to come up with the kinds of

legislation and measures that will ensure that the relatives of ours and yours,

who are clients or who may one day be clients in these facilities, will, in fact, be

treated fairly, and that the treatment will be effective in helping to bring them

along and improve the quality of life for all of them.

So we ask that you be considerate of each other, be considerate of

the time, and that gives us an opportunity to hear everyone that has something

to say.

Thank you very much.

ASSEMBLYWOMAN WEINBERG: Okay. The first--

Oh, another housekeeping issue. Please make sure that when you

come to the microphone -- the red button means the microphone is on, which

always interested me why we choose red to mean go here, but thatís the State

of New Jersey. And identify yourself, because this will be recorded -- so when

the OLS staff needs this, so that when they do the printed testimony, we know

who you are and who spoke. Please remember to do that. The microphones are

in the front.

With that, the bills that we are considering at this moment are

A-2849 and A-2855. Iím going to ask Assemblyman Munoz to come forward,

if you are here.

A S S E M B L Y M A N E R I C M U N O Z: I was hiding.

6

ASSEMBLYWOMAN WEINBERG: There you are. Thank you.

A S S E M B L Y M A N G U Y R. G R E G G: I assume that means me,

too?

ASSEMBLYWOMAN WEINBERG: Yes. Iím sorry.

Assemblyman Gregg, the co-prime sponsor.

ASSEMBLYMAN MUNOZ: I absolutely want to wish everyone

good afternoon. I thank the Committee Chairs, Assemblyman Payne,

Assemblywoman Weinberg, for allowing me to speak. Thank you, all the

members of these joint Committees, all of which I know and respect very much.

I also want to thank Assemblyman Guy Gregg, who is co-prime

sponsor of Assembly Bill No. 2855, and the other cosponsors of the bill that

include people of both parties.

I guess I should identify myself. I apologize. My name is Dr. Eric

Munoz. Iím an Assemblyman from the 21st district of the State, and also I am

a Professor at the University of Medicine and Dentistry of New Jersey, at

Newark University Hospital.

Over the last 25 years, Iíve done a lot in health delivery, from

taking care of people, from being on all kinds of review bodies, State and

Federal, local government. I live in Summit. Iíve been on their Board of

Health. Last night I worked all night at University Hospital. As you well know,

University Hospital has become a center of focus of a couple of kids up there,

that Iíve seen, that we have to look -- and indicate how well weíve been able to

look after our citizens. Two kids that were locked in a basement are in our

hospital and doing well. We have to say to ourselves, "Are we doing everything

for our citizens, and can we do better?"

7

Now, relative to Matthewís Law and to restraints -- August 22, the

Division of Developmental Disabilities made a number of findings relative to

Matthew Goodman. And those findings were that Matthew Goodman died a

preventable death. That means that because of the way he got treated, the way

we as State officials, and we in charge of his treatment -- that Matthew

Goodman died. They developed a number of findings, had various citations.

But we have to look at that and say, can we do something better? And I would

say, yes.

Iíve introduced the law, and the law deals with restraining

individuals that are under care of the State. I would go back and say-- I work

in an acute-care hospital. Twenty years ago, when I was a student, we could

restrain people willy-nilly. There were very lax regulations. Those regulations

have changed. Last night, for me to restrain someone required tremendous

monitoring, a system that guarantees that we do it only as a last resort. We

have to ask ourselves, in these homes, in these areas with kids and young adults

that are troubled, are we sure that theyíre being only restrained as a last resort,

number one; and if they are restrained, do we have a system in place that

guarantees -- and I say guarantees -- that their care is proper, and theyíre not

locked in a cellar, and theyíre not locked in some room, and theyíre not tied up

with football helmets, and their head and their arms or their legs tied. When

you look at the facts of these cases, I would say, whether youíre a State

Legislator or a citizen, you would be very troubled.

Just real quickly on what Matthewís Law does, it reduces -- doesnít

eliminate -- but greatly reduces the use of restraints, and the mechanism that

theyíre used. It increases the monitoring and accountability when restraints are

used. Itís modeled after other states that have recommended these changes.

8

There are components of staff training regarding the use of restraints, and thereís

also a Web site for public information relative to restraints.

I would close and say this. All of us -- and I agree with what

Assemblyman Payne said, and Assemblywoman Weinberg -- want the best for

our citizens of the State. I urge you, this is not about politics, this is about

health. I got involved in this whole endeavor because I wanted and cared about

peopleís health. Iím not a politician, and I would say this: I would say for all

of you, make sure that we guarantee that our citizens are safe. I think there,

right now, is a lot of public doubt, going back to the case in Newark: Are we

doing the best for our citizens? I ask you to pass Matthewís Law.

Thank you.

Iím happy for any questions.

ASSEMBLYWOMAN WEINBERG: Assemblyman Gregg.

ASSEMBLYMAN GREGG: Thank you, Madam Chair.

Thank you, Chair.

I want to be very respectful for your time frame today. I can see

you have a lot of folks to listen to, and quite frankly, I think that will be the

best testimony that you will hear today.

Somebody would say, "Why is Assemblyman Gregg on this bill?"

I started this road a long time ago, Assemblyman Payne, when I was the Chair

of Regulatory Oversight. When I took over that Committee, or began that

Committee, actually, I wasnít sure where that road would take us, and I had no

idea that that road would take us into the health care of our citizens as

dramatically as it did, and how that Committee dealt with those issues, which

were not necessarily the issues I thought would be coming to my table first. The

issues of the way we deal with our most vulnerable came about in that

9

Committee, and some of the, quite frankly, horrors that we do in some of our

institutions came about.

I congratulate Assemblyman Munoz, and any of you, who have put

your names on any of these bills. But I want to come as a parochial person

today, thinking that our bill is best. Itís not because our name is on it, itís

because itís the toughest one. Thereís no question, when you talk about public

health, itís not compromisable. We can compromise about 70 miles an hour or

65, we can compromise on many things, but I donít think at this time and place

in our State is the time we should compromise on whether or not one bill is

stronger or weaker than another. I donít think a brain-damaged individual, due

to something that happened to them, like a drowning or something of that

nature, should be considered differently than a autistic child. Because their

behavioral situations may be the same, we shouldnít treat them any differently.

There may be testimony today to say we may be going too far with

our bill. I say you cannot not go too far in this issue. You canít. We, as

legislators, owe that to our citizens. Weíve let people die. Thatís serious stuff.

So I donít think we should be debating about paragraphs and isís and ofís, there

should be more shallís today. And quite frankly, if anything in our bill is too

stringent, I think we can deal with that six, nine, or 12 months later, talking

about the stringency because we saved too many lives, as opposed to having one

more child or citizen falling between the cracks.

So I come to you today -- listen to the testimony of these folks,

look at the documents in front of you, and from my standpoint, take the

toughest one.

Thank you.

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ASSEMBLYWOMAN WEINBERG: Thank you very much,

Assemblymen.

Are there any questions for the prime sponsors of one of the three

bills weíre--

Donít take this personally, but we hope to keep the questions from

us to as minimum amount of time as we can, so that we can hear from the

audience. But -- sorry, Herb. (laughter)

Assemblyman Conaway first. (laughter)

ASSEMBLYMAN CONAWAY: Madam Chair, I think that was a

personal comment. (laughter)

ASSEMBLYWOMAN WEINBERG: I was anticipating something.

ASSEMBLYMAN CONAWAY: Thank you, Assemblymen, for

your presentation. I did have a question, in looking over some of the provisions

of the bill. I wondered if you might not describe to me how the county-based

human rights review board will work in the context of this legislation. Iíll leave

it at that.

ASSEMBLYMAN PAYNE: Speak into your mike, please.

ASSEMBLYWOMAN WEINBERG: Turn your mikes off. It can

only be one--

ASSEMBLYMAN MUNOZ: Theyíre off.

ASSEMBLYMAN GREGG: Theyíre off.

ASSEMBLYMAN PAYNE: Theyíre off.

ASSEMBLYMAN CONAWAY: I wondered how you envisioned

the county-based human rights review board working in the context of this bill,

and are there parallels to this? Iím thinking of the investigational review boards

that hospitals sometimes use when you are dealing with experiments and things

11

like that. I see you have a position on who should serve on these boards. How

do you envision that it will work? My concern, of course, will be, as I am a

physician, and do believe in the -- I donít know, I donít know what the proper

word is -- but I believe in professionalism as applies to health care, certainly.

Iím wondering, do you think that this board will be in a position of secondguessing

the decisions that health-care professionals make and as regards to

treatment plans?

Itís struck from the bill? Okay. So you guys donít know about--

Thatís not part of your, well--

ASSEMBLYMAN MUNOZ: Well, actually, I do, Dr. Conaway.

Itís an excellent question, and Iíd be happy to answer, but a good question.

ASSEMBLYWOMAN WEINBERG: It is in the Committee

Substitute.

ASSEMBLYMAN CONAWAY: Oh, okay. Sorry.

ASSEMBLYWOMAN WEINBERG: So, if you want to comment--

ASSEMBLYMAN MUNOZ: You know, would I just comment--

Dr. Conaway is talking about-- My concept of that is it would be an oversight

group. There are other states that have it, Herb. I think that physicians and

other health workers donít like to be oversaw. Iím a surgeon. We do. The

reality of medical care in America in 2003, we have lots of checks and balances.

So I see this -- when, I think that particular feature, which is not in Matthewís

Law, is positive in the sense that itís an oversight, and there are other states that

have implemented that. Itís not a component of Matthewís Law, though.

ASSEMBLYMAN CONAWAY: You would agree, however, that

the oversight is not, generally, by nonprofessionals, itís by your peers. And if

thereís an issue -- of course, things sometimes get into court, if somebody thinks

12

theyíve been injured. But generally, physicians are not in a position of being

reviewed by nonphysicians as regards to their professional positions. Isnít that

right?

ASSEMBLYMAN MUNOZ: The only way itís going to work is

peer review. In any field, thatís the way itís going to work.

ASSEMBLYMAN CONAWAY: And peer review.

ASSEMBLYMAN MUNOZ: Yes.

ASSEMBLYMAN CONAWAY: Emphasis on peer.

ASSEMBLYWOMAN WEINBERG: Assemblyman Rooney.

ASSEMBLYMAN ROONEY: Thank you, Madam Chairman.

Iím always interested in the geneses of bills, particularly on this one,

because I know a little bit about the history. I know that Bancroft seems to be

the target in question. I know that Matthew Goodman was, basically -- he was

neglected, and as a result died. Actually, he was restrained and was-- Itís a

horror story. Itís an absolute horror story from what Iíve been reading, and Iíd

like a little bit more about the genesis. And, also, the question Iíd like to ask

beyond that is -- has this happened in other facilities? Because weíre looking at

a whole group-- I belong, or actually Iím on the board, for three different

organizations: New Concepts for Living, Spectrum for Living, and Life

Opportunities. And right behind my house, I have another group. Bob

VanQuinton (phonetic spelling) is here representing that group. And thereís a

group home, probably, within about three houses from my backyard. I was a

little bit helpful as the mayor of the town to bring that facility there.

Iím concerned with the treatment in all the facilities. Iím concerned

that one person would die as a result of being treated in one of these facilities.

That bothers me. Iíd like a little bit more about the genesis. Iíd like to know

13

about Bancroft. Iíd like to know if thereís anything beyond Bancroft, because

I donít want to throw out the baby with the bath water. And then I, also, see

in some of our notes that Bancroft was issued an order to comply by January 2,

2003. It says here, "If Bancroft fails to come into compliance, DHSS will file

an application for receivership." Has that happened? Do we know--

ASSEMBLYWOMAN WEINBERG: Iím going to interrupt you,

Assemblyman Rooney, since Iím in charge of this portion of the questioning,

and Assemblyman Payne will do the next. This is not a hearing on Bancroft.

This is a hearing about the use of restraints, and thatís why I spelled out the

parameters at the very beginning. In our work, collectively, we found that many

of the problems that are coming out of the treatment, particularly of

developmentally disabled, revolve around the use of restraints. So we do not

want to get into a hearing that we were not put into--

ASSEMBLYMAN ROONEY: Madam Chairman, thereís one

problem with that philosophy. And this is called by both versions of the bill,

Matthewís Law. Itís called Matthewís Law for a particular reason. Itís

Matthew Goodman and what happened to Matthew Goodman at a particular

facility. I think itís very pertinent as to what happened, and I think that should

be on the record because we have -- weíre making a physical record. So I asked

the question.

ASSEMBLYWOMAN WEINBERG: I know we will get testimony

about what happened, but I just want to make very clear that what happened

in this tragic case helped bring this discussion to the forefront. This is not a

hearing on a particular institution.

ASSEMBLYMAN ROONEY: Okay. But again, Iíd like to know

if this is the exception or is it the rule? Is it happening in other facilities?

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ASSEMBLYWOMAN WEINBERG: Well, I will tell you that I

have heard talk and heard from parents that there is a disagreement with the

way restraints are used, and thatís what we want to talk about today.

ASSEMBLYMAN ROONEY: Okay. I have no problem with that.

Thank you.

ASSEMBLYWOMAN WEINBERG: Thank you.

Assemblyman Cryan.

ASSEMBLYMAN CRYAN: Good afternoon, and thank you both

for being here.

I just have a couple questions. My questions are to the Committee

Substitute, in particular, on Page 2, and theyíre also put on your original bill.

Three-quarters of the way down the page, "the person is given the opportunity

to move and exercise the parts of his body that are restrained at least 10 minutes

for every 60 minutes of restraint." And then the follow-up to that is, "a member

of the staff lessens or discontinues..." My concern here is -- and I donít have the

knowledge that a lot of these folks -- and for better or for worse, I havenít

toured one of these facilities. So, educationally, if you could help me. My

concern is staff. I mean, clearly, one of the things that jumps out to me --

whether you referred it to Newark last week, or -- is that maybe staff issues

arenít there. Yet we seem to increase the regulations here and the demand for

the need, and, in particular, these two particular instances jump off the page at

me.

Do we, in your opinion, have the staff necessary if we implement

these changes, or is there a fiscal concern as well?

ASSEMBLYMAN MUNOZ: Through the Chairs, good question,

Assemblyman. The bottom line is this. If you really look at the whole issue of

15

restraining, 20 years ago we used to be able to write willy-nilly. In hospitals,

people got restrained. Weíve had to change. We had to train staff, and weíve

had to actually have additional staff. The bottom line is, I donít like people--

The reason I got approached, initially, about this -- I have to, periodically, tell

people a loved one is gone or critically ill. I donít like that. And one person, if

we could save one life or two lives or 10 lives, and it costs the State whatever it

costs, I mean-- I was told years back in medical school, can we put a price on

human life? The answer is no.

So I suspect there will be some associated changes needed. But if

your son was in the facility, and I was the doctor, and I was to tell you that

your son was gone because of this problem, that just doesnít cut it.

ASSEMBLYMAN CRYAN: With all due respect, itís not a question

of whether itís my son or your son. Itís a question, we have a bill in front of us,

and I just want to understand without the emotionalism of it. Is there a cost

impact, and do you have any idea as to what it may be?

ASSEMBLYMAN MUNOZ: I would say this. That over the years,

there would be some cost associated with training, with doing things differently

-- I mean, Iím an expert in medical financing -- Iíd be ridiculous to say not. On

the other hand, if we donít do it-- I mean, just read the front of the paper. I

donít like doing that.

ASSEMBLYMAN CRYAN: I donít argue with you about the need.

Again, to reiterate one last time about being argumentative, I just clearly want

to understand, is it your envision that we would need additional staff as a result

of the additional-- Clearly this bill, well-intentioned and clearly, I think,

favorable, does anybody have any idea of what the fiscal impact is?

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ASSEMBLYWOMAN WEINBERG: Assemblyman Cryan, the bill

that talks to training, which will come up a little bit later in our agenda, has a

very big cost attached to it and--

ASSEMBLYMAN CRYAN: That I understood, Madam Chair, and

I know that thatís not part of this bill. My concern was specific to those points

of the bill, and do we have any -- do we or donít we? I donít think itís that

unreasonable a question.

ASSEMBLYWOMAN WEINBERG: Whether you would need

additional staff.

ASSEMBLYMAN CRYAN: That would be my--

ASSEMBLYWOMAN WEINBERG: Oh, Iím sorry.

Go ahead.

ASSEMBLYMAN CRYAN: And one last follow-up to the sponsors,

and then Iíll-- Are there any other conditions in this bill besides the two that I

highlighted that you feel, or in areas -- because clearly you gentlemen have

worked hard on this for years and years. Is there any other areas in this bill that

we need to identify additional staffing levels for?

ASSEMBLYMAN MUNOZ: Assemblyman, I think that, as you

pointed out, itís a good question. Really, it is. If we make this kind of a

change, which is going to be a major change, youíre going to hear people coming

and say, "This is a major change." Itís just like we did in hospitals over the last

20 years. Itís going to be associated with changes in behavior and costs.

Thereís no question about it, on the other side thereís the human life side.

ASSEMBLYMAN CRYAN: I understand that.

Thank you.

ASSEMBLYWOMAN WEINBERG: Assemblywoman Quigley.

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ASSEMBLYWOMAN QUIGLEY: Thank you, Madam Chair, and

I will be brief. But there are other human lives involved, too, and I wondered

if Dr. Munoz could speak to the question of staff safety. I had the unique and

-- and I have to say, even in retrospect -- unpleasant experience of working three

years in a mental institution. I know that there were times when the patients

there acted out in such a manner that for the staff to unrestrain them for 10

minutes and let them exercise their limbs, they were in great danger. There had

to be five or six staff persons present in a locked room when this happened.

So what is your impression of -- certainly we want to protect the

safety of patients, but we canít ignore the safety of staff as well.

ASSEMBLYMAN MUNOZ: Assemblywoman, thatís an excellent

question. I started my medical career -- and to some of you, this dates me now

-- at Marlboro State Hospital in the í60s. And if you ever saw the movie One

Flew Over the Cuckooís Nest, it was exactly like that. Thereís no question that

sometimes patient and staff safety really is a factor, although medicine in the

year 2002 has advanced so that there are ways that do take staff safety-- You

donít want someone running berserk, through, and hurting people. But there are

ways to deal with that. Iíd say go back 40 years, to One Flew Over the Cuckooís

Nest, we donít want that in New Jersey anymore either.

ASSEMBLYWOMAN QUIGLEY: But medication -- I assume

thatís what youíre referring to, has its drawbacks as well. We donít want

patients who are continually overmedicated.

ASSEMBLYMAN MUNOZ: Absolutely. Correct.

ASSEMBLYWOMAN WEINBERG: Assemblyman Conaway.

ASSEMBLYMAN CONAWAY: I would just follow on what Joan

said, Assemblywoman Quigley, that there are also questions of the safety of

18

other patients in the institution. Now, my background in this is that I serve on

the Board of Family Service, and we deal with -- as a trustee -- a social service

organization that deals with people who have mental health problems,

developmental problems, and providing group homes and other services to them.

And understand, in my dealings with the professionals there, that these are welltrained

people, professionals, who have decided to dedicate their lives to people

with very serious problems. They approach this as I hope all -- we in health care

do, with always putting the patientsí interests first and foremost.

One of the things that I wanted to ask you about is in your bill, the

definition of aversive technique. I raise this now -- often we do this toward the

end -- but while youíre here and can think about it. I wondered whether or not

you thought about -- and Iím going to suggest this to you, and Iím going to

bring it up later as we get through the end of this bill and the definition of

aversive technique -- that there should be some additional wording there that

would outline or define the fact that the aversive technique should be used when

the risk of not applying the aversive technique is greater. That is, the risk of

physical or psychological injuries greater than not applying. And of course, you

know in medicine, we always do risk benefit analysis for every modality and

treatment that we apply. We have to always make a balance, always focusing

on whatís best for the patient.

So I was wondering whether or not, as we go through these

deliberations and hear testimony, whether or not we might not tighten up this

definition by adding in some wording that would suggest that we look at the

consequences of not applying these aversive techniques, as theyíre described in

the context of physical or psychological injury.

19

ASSEMBLYMAN MUNOZ: Dr. Conaway, can I respond to that

question?

ASSEMBLYMAN CONAWAY: Please.

ASSEMBLYMAN MUNOZ: First of all, it gives me a great thrill

to actually be asked the question by a fellow Assemblyman, who is also a

physician. Congratulations, Dr. Conaway.

I want to just say, for the record, that I have the highest respect for

people who work in these facilities. I mean, Iíve been to these facilities. Itís a

very challenging thing. A lot of the patients are difficult, and I have the highest

respect for the doctors, for the allied staff, for the nurses. Relative to aversive

technique, Herb, that really gets down to the medical decision-making. I was

shocked. Iím a surgeon. Iím not a psychiatrist. I was shocked, and I think,

probably, people in this room would be a little bit concerned about the whole

idea of aversive technique. And basically, to educate you, that means you do

things that try to present noxious stimuli to try to change behavior. Now that

can be relatively mild, or it could be not so mild.

So I agree with you, that whatever we can do to tighten that part

of the regulation or the law would be very important. And we want to try to

keep these as tight as possible and make sure itís a medical decision, because

those are the doctors that are caring for these people.

ASSEMBLYMAN CONAWAY: That raised -- just a follow-up.

Because somewhere in the bill, they talked about the use of braces for bringing

about alignment. And Iím thinking this is what a rehabilitation physician does

as part of their training. To think that someone is going to review a brace -- a

decision to apply a brace, a non-trained person, that struck me as odd. And so,

I think these definitions, as they occur throughout the bill, need to be looked at

20

very precisely. I agree with you that the aversive-- Iím uncomfortable with the

use of that word. Iím not sure that a cast -- you know, you cast someoneís arm

-- is that aversive? Well, that certainly treats the fractured arm or helps to align

a joint thatís out of place.

So I agree with you, thereís a problem with that term. I wish we

could come up with a restrictive, perhaps, or some other technique, recognizing,

of course, that we are talking -- we should be talking globally and contextually.

That is, a treatment plan includes something that is restrictive and something

which is not so, which is perhaps a positive.

ASSEMBLYWOMAN WEINBERG: Okay.

Thank you very much.

ASSEMBLYMAN MUNOZ: Thank you.

ASSEMBLYWOMAN WEINBERG: And now Iím going to turn--

Oh, Iím sorry. I wasnít fast enough.

Assemblyman Thompson.

Remember what I said. We have a very large audience out there,

so please, Committee members, hold your questions to simple questions where

you really need information.

Thank you.

Sam.

ASSEMBLYMAN THOMPSON: Thank you, Madam Chair.

First, I have a comment in regards to one point raised by

Assemblyman Gregg, and then a question for Assemblyman Munoz.

Assemblyman, you expressed your concern relative to who may or

may not be included in the definition of traumatic brain injury patients, that --

in other words, the ones it may apply to.

21

Upon sitting down here, I received the comments from the Division

of Developmental Disabilities, related to the legislation here. One of the

recommendations that they make is a modification in the definition of

traumatic brain injury. They recommend "means an acquired injury to the

brain. Such term does not include brain dysfunction caused by congenital or

degenerative disorders, nor birth trauma, but may include brain injuries caused

by anoxia due to trauma." So, if the sponsor should choose to make that

modification, I think it would head in the direction that youíre speaking of

there.

Assemblyman Munoz, one of the significant differences between

your proposed bill and the Committee Substitute is that your bill would restrict

the use of restraints only to emergency situations. Whereas, the Committee

Substitute includes where it is included in the individual health plan.

ASSEMBLYMAN MUNOZ: Right.

ASSEMBLYMAN THOMPSON: One of my concerns here is, for

example, what was referred to by Assemblyman Conaway, where an individualís

problems are not something that youíre going to rectify in minutes, hours, or

even a day or so. But the individual represents a continuing threat to himself

or to others. Under these circumstances, to me that would not constitute an

emergency. I mean, if it is an on-going, continuous problem that is there, thatís

not my definition of emergency. I would be concerned that if we were not

permitted to include it in the individual health plans, then, okay, itís not an

emergency. Itís something that is there, every day, day in and day out. So Iím

afraid that would be excluded under your bill -- utilization of restraints.

ASSEMBLYMAN MUNOZ: Through the Chair--

ASSEMBLYWOMAN WEINBERG: Yes.

22

ASSEMBLYMAN MUNOZ: Assemblyman Thompson, youíre

really bringing a key point, and let me explain this clearly for the Committee.

If you go into a hospital, I, as a doctor, I have a health plan for you -- you have

a heart attack, youíre shot in the head, whatever it is. If I put in that health

plan, just like these kids and these young adults that we could restrain as

needed, that basically means that restraint is needed. What weíre saying is that

if, in fact, someone is going to be restrained, I donít, as a doctor, just write it

willy-nilly in the health plan -- everyone that comes into a hospital, everyone

that goes into a facility has a health plan. But if itís required that something

different happens -- thereís a different evaluation, a different monitoring, a

different tracking -- that is whatís happened in Americaís hospitals. That should

happen in these facilities. If it doesnít happen, weíre going to keep reading the

same thing.

So it is an important part, Assemblyman, and itís an important part

of the bill that youíre looking at and weíre talking about today, versus once you

say, "Write it in the health plan." Every person who goes into a facility has a

health plan. Basically, there wonít be much change.

ASSEMBLYMAN THOMPSON: Madam Chair, I agree with one--

ASSEMBLYWOMAN WEINBERG: No. No. We really have to

hear from the audience.

ASSEMBLYMAN PAYNE: Exactly.

ASSEMBLYWOMAN WEINBERG: Please. Youíll have time to

comment later.

ASSEMBLYMAN PAYNE: I was going to suggest that those of us

-- we can question our colleagues at other days, other times. We hear their

23

testimony. But itís extremely important. We have countless people who want

to testify.

ASSEMBLYMAN MUNOZ: Just get me off, Assemblyman.

ASSEMBLYMAN PAYNE: Right.

ASSEMBLYMAN MUNOZ: Do you want us to stay up here, or--

ASSEMBLYMAN PAYNE: So, if we can do that, if we can limit

our, the Committee members, questions and then get some responses. But we

can always be in touch with our colleagues if we have questions about their

legislation later on. But I think we should try to give our audience an

opportunity to speak.

ASSEMBLYWOMAN WEINBERG: Youíre on.

ASSEMBLYMAN PAYNE: Thank you very much.

Iím going to ask for Dr. Judith Favell to come to testify now,

please.

UNIDENTIFIED SPEAKER FROM AUDIENCE: She stepped out

to the ladiesí room. (laughter)

ASSEMBLYMAN PAYNE: She did? Well, she missed her chance.

ASSEMBLYWOMAN WEINBERG: Doesnít that always happen

at the Academy Awards? (laughter)

ASSEMBLYMAN PAYNE: We can move on.

Letís have Colleen Thoma, please.

Colleen. Is she here? Doctor? She can identify herself.

Make sure you keep in touch -- our timekeeper will keep in touch

with you, and will let you know when youíre--

Doctor, please identify yourself and your affiliation.

C O L L E E N A. T H O M A, Ph.D.: Yes. Hello. Thank you.

24

I am Dr. Colleen Thoma, and I work at Virginia Commonwealth

University. Iím a professor there of Special Education. Iíve been there since

September. Prior to that, I was a professor at the University of Nevada at Las

Vegas, and while there, I worked with other members of he Nevada TASH group

to pass Nevada Assembly Bill No. 280, which is very similar to Matthewís Law.

It prohibits and/or restricts the use of aversive behavior techniques for all

children and adults with disabilities. That bill was signed into law in the

summer of 1999 and has been in effect in Nevada since then.

Iím here today on behalf of Assembly Bill No. 2855, known as

Matthewís Law. I urge you to vote in favor of its passage. Like Nevadaís law,

Matthewís Law would have both in-place restrictions on the use of restraints,

as well as training to staff that teaches them other techniques. What happens

is, if restraints are used as part of an everyday plan as the habilitation plan, that

is the first step that staff go to. There isnít the recognition that the behaviors are

occurring for a purpose. That is often the only way children and adults with

disabilities can communicate that somethingís wrong, that they donít like whatís

happening. And so the challenging behaviors occur. And if all we do is stop it,

we donít teach them something else to do to communicate that to change the

situation, and we donít have the long-term effects that are possible with positive

behavior supports.

I know this works, not just from an ivory tower. I read it in a

journal perspective. But I worked, prior to going for my doctorate, at an agency

in Pittsburgh that worked with children who had failed everywhere else. This

was kind of their last resort. They had failed because of the challenging

behaviors, because they would hit people, because they would kick, because

they would abuse themselves. They came into our program. We learned why

25

those behaviors occurred, and then we found ways to teach them other things

to do. We were able to move them, then, from these group homes into living

with families. They had friends in the communities. They went to regular

schools. And those kind of long-term, really positive outcomes donít happen

when you use just restraint and just stop the behavior.

The training was important in Nevada when the bill was passed.

We didnít see an increase in kids being hurt. The emergency restraints were used

until staff learned other approaches, until the children learned the other ways of

communicating, and all of that did take a while. For the agencies that used

really good positive approachesí trainings, we saw a decrease in the number of

restraints. For those that used restraint training or crisis intervention training,

it was just, really, another rubber stamp to have them use restraints again and

again.

So today I urge you to be the voice of hope and to tell agencies in

New Jersey that citizens with disabilities wonít be hurt, humiliated, or worse --

killed -- in the name of treatment anymore. Vote instead for Matthewís Law,

Assembly Bill No. 2855.

Thank you.

ASSEMBLYMAN PAYNE: Thank you.

Do we have any questions for Dr. Thoma?

ASSEMBLYMAN CRYAN: I have one.

ASSEMBLYMAN PAYNE: Assemblyman Cryan.

ASSEMBLYMAN CRYAN: Thanks, Doctor. Has it been your

experience-- One of my concerns about this bill is that the result of putting more

emphasis on restraints or putting more legislation on it will, in fact, keep the

child institutionalized. I think the goal of everyone is to get children and adults

26

into group homes and out more in a society environment. Yet one of my

concerns with this legislation is that if we vote for it, in fact, we restrict that

option, because group homes wouldnít be able to handle the compliance in this

the way an institution would. So, in fact, Iím kind of concerned that a reverse

impact would happen -- we would keep more people institutionalized as a

result. I donít know whether thatís correct or not, but -- your experience here,

and you touched upon it -- could you expand upon that concern and see if that

makes sense?

DR. THOMA: Yes, thank you.

It was a concern. It was a concern for the other Assembly folks in

Nevada as we worked for AB-280, but the opposite really was the case -- is that

as we taught students more skills, as we really habilitated instead of just

controlled what they did, they were more successful in the group homes. They

were more able to move into even less restrictive environments. Maybe, again,

a little bit in Nevada, because itís been a shorter period of time, but even more

so with what we saw in Pennsylvania.

ASSEMBLYMAN CRYAN: So youíre of the agreement that if we

do more training and less restraints we can, in fact, create a more positive

environment and maybe move towards more group home environments, as

opposed to institutions.

DR. THOMA: Yes. And I think that, again, the type of training

is really important, that we donít just use this crisis intervention training that

teaches a little bit about de-escalating, but a whole lot about how to do

restraints well. Again, itís another tool that people that feel more comfortable

in using restraints -- and are more likely to use it.

27

The other point I wanted to make about the training is that in

Nevada we didnít ask for or receive an extra dollar for training. We reallocated

the money that was already there for group home staff and school district staff.

For training, we just included more positive behavior support training, instead

of the crisis interventions.

ASSEMBLYMAN CRYAN: Thank you.

ASSEMBLYMAN PAYNE: Iíd just like to underscore that part.

Was there additional moneys needed for training, or whatever? Just repeat what

you just said about whether or not it cost more?

DR. THOMA: Yes. Again, we did not ask for or receive any

additional money for training, as a result of the passage of 280. We just

reallocated training dollars that were already there.

ASSEMBLYMAN PAYNE: Assemblyman Rooney.

ASSEMBLYMAN ROONEY: I was just thinking that, if she canít

answer this question -- but somebody here should be able to answer it. We

donít do any training dollars for any of these people in these group homes that

we have, currently. So theyíre reallocating dollars. Iím concerned that thereís

no appropriation attached to this bill to deal with this. Each of these

individuals and clients in these group homes, basically, have a contract with the

State of New Jersey through the DDD. It runs, probably, about $50,000 a year.

I donít know the exact numbers at this point, but weíre paying for that. I think

there has to be an appropriation on this. They can reallocate. We canít

reallocate anything because itís a matter of the services. There has to be a

training component in here, and it has to be an appropriation.

ASSEMBLYMAN PAYNE: Reallocation, Doctor, from what --

another pool of money, correct? It wasnít additional moneys?

28

DR. THOMA: Right.

ASSEMBLYMAN ROONEY: It was training money for the staff.

DR. THOMA: Right. It was built into the state, but also, we

found other grant opportunities, other people out there already doing training.

There is a group in Oregon who, as part of their training, need to come to every

state and--

ASSEMBLYMAN ROONEY: Well, you have to understand. There

is no training, currently, for any of the staff, and there should be. There should

be a totally separate bill dealing with training of people in these facilities. The

problem is, too, weíre talking about people who are making an average of $7 an

hour in New Jersey.

DR. THOMA: Right.

ASSEMBLYMAN ROONEY: So that this is another problem that

we have. And weíll be hearing about that later, Iím sure.

ASSEMBLYMAN CONAWAY: After you.

ASSEMBLYMAN PAYNE: Thank you.

ASSEMBLYMAN CONAWAY: Just for the record. Having worked

-- again, from my background working with a social service organization,

working in the field of mental health, we, as part of our budget, have training

that goes on all the time -- in-service training and other training.

Now someone may argue that itís inadequate. Thereís not enough

of it. But to say that thereís no training--

ASSEMBLYMAN ROONEY: There isnít.

ASSEMBLYMAN CONAWAY: --I think, is not accurate,

respectfully.

ASSEMBLYMAN PAYNE: Thank you.

29

ASSEMBLYMAN ROONEY: May I just respond to that. Iím

talking about the group homes that are operated by the people here. There is

no training required for those people. Whatever the group home organizations

do is not included by anything in State law or anything in our State budget.

Theyíre given a contract per person to basically house, feed, cloth -- the whole

thing. So, in Health and Human Services, yes, thereís plenty of training

available. But in the independent groups that run these homes, theyíre not

required by law, and they should be.

ASSEMBLYMAN CONAWAY: You said, "required by law," but

we have a certification that we have to undergo, and our group homes are

studied. There is an accreditation body and looks at aspects of training in our

program, and itís part of our accreditation going forward. Not everything needs

to be done by State law regulation, as I think you well know. But itís there as

part of accreditation, and then, therefore, your ability to get access to State and

Federal funding.

ASSEMBLYMAN PAYNE: Thank you.

Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: In answer to Assemblyman

Rooney, A-2850, which is on our agenda today, is a separate bill requiring the

training. It calls for the appropriation of $2,104,740, and does state that it

covers both private and public facilities.

ASSEMBLYMAN ROONEY: Weíre talking about current laws,

Sam.

ASSEMBLYMAN THOMPSON: That is a separate bill.

ASSEMBLYMAN ROONEY: But Iím talking about a current law.

ASSEMBLYMAN PAYNE: Thank you.

30

Thank you, Doctor.

ASSEMBLYWOMAN WEINBERG: Is that Roy Carbone, from

People Support Network. (no response)

S E L E N A A L L E N: Hello. Iím Royís assistant, and Iíll be saying his

testimony for him.

ASSEMBLYWOMAN WEINBERG: Yes. Are there other people

from your organization, here, that wish to testify? Well, why donít you come

up at the same time if possible.

MS. ALLEN: Yes. My name is Selena Allen.

ASSEMBLYMAN PAYNE: And youíll identify whoever else is with

you, please, Ms. Allen.

ASSEMBLYWOMAN WEINBERG: Ms. Allen, are you going to

start on behalf of everyone?

I actually canít see whoís speaking here.

ASSEMBLYMAN PAYNE: Just speak up, thatís all.

All right. Thatís okay.

ASSEMBLYWOMAN WEINBERG: And let me reiterate, if youíre

not speaking into a microphone up at one of these tables, it will not come across

for the transcript.

UNIDENTIFIED SPEAKER FROM AUDIENCE: (indiscernible)

ASSEMBLYWOMAN WEINBERG: You know, Iím really sorry.

I donít want to put you to any more stress in terms of getting up here, but as I

said, if your voice is not in the microphone, it wonít come across in the

transcript.

31

ASSEMBLYMAN PAYNE: Whereís Mr. Carbone? Just raise your

hand, or -- okay, if youíre back there. If youíd like to come up, we can, also,

arrange for you to get up here, too, if you would like to.

ASSEMBLYWOMAN WEINBERG: In fact, Assemblyman

Conaway just pointed out, this is something for us to consider in the future in

terms of having a portable microphone in here that could be hooked up.

So, thank you.

K A T E B L I S A R D: Iíll start one more time.

Ms. Allen is staff person for Roy Carbone; and next to Ms. Allen

is Mr. Ed Palermo; and next to Mr. Palermo is Robert Fesel -- all members of

People Support Network. Mr. Fesel will use an electronic speaker, but we have

done this before, and it will be picked up by the microphones. But it may take

a moment to start the Liberator, if you could bear with us.

ASSEMBLYWOMAN WEINBERG: We will certainly bear with

you.

Thank you, and welcome.

And Ms. Allen, do you want to start?

MS. ALLEN: Yes, I can start.

Good afternoon.

"My name is Roy Carbone. Thank you for the opportunity to

speak today. I am a person with a significant disability. I am a disability

advocate. I am here to say that no human being should be put in restraint

because they have a disability. Restraints must not be the first or only way to

help any person deal with any disability. There are other ways to help. There

are people here today that can tell you about these humane ways.

32

I have served on the New Lisbon Developmental Center Human

Rights Committee trying to solve the problems of abuse and neglect for people

with disabilities who do not have a voice of their own. I have friends and

colleagues who have suffered abuse, neglect, and isolation, and all in the name

of treatment. People with disabilities have a right to receive services that do not

cause violence, pain, or death.

How many people with disabilities have to be hurt or die before

something is done? Your help is needed.

Thank you. Roy."

ASSEMBLYWOMAN WEINBERG: Thank you very much.

Your next person.

E D W I N P A L E R M O: My name is Ed Palermo. Iím here today to

speak on Matthewís Law. I, myself, was a resident in an institution and was

threatened with restraints and handcuffs. Iíve watched most of my friends being

put in handcuffs and locked away in isolation. Nobody deserves them.

Nobody deserves to be in restraints. There are other ways.

I spent 19 years in an institution and watched half of my friends

being put in handcuffs and restraints, and nobody deserves that.

I thank you.

ASSEMBLYWOMAN WEINBERG: Thank you. Thank you very

much.

Next person there.

ASSEMBLYWOMAN VANDERVALK: Madam Chair?

ASSEMBLYWOMAN WEINBERG: Yes, Assemblywoman.

33

ASSEMBLYWOMAN VANDERVALK: May I just ask-- When

you saw your friends being put in handcuffs and restraints, were they acting out

somehow, or was this just normal procedure that they -- was on a regular basis?

MR. PALERMO: Well, theyíve had-- Some of my friends have

gotten into fights where the campus police had to be called. They mainly just

put the handcuffs on them just to put them on. Nobody deserves that.

ASSEMBLYWOMAN VANDERVALK: Thank you very much.

ASSEMBLYWOMAN WEINBERG: Okay. The next gentleman.

R O B E R T F E S E L: (speaking on a Liberator) Good afternoon. My

name is Robert Fesel. I live and work in Mercer County. I am here today

because I am a man with cerebral palsy, and I can think for myself. I know the

isolation of not having a voice to be heard. I know the terror of being restrained

against my will and for no other reason than having a disability. I know

because it has happened to me. It shouldnít happen to any person, especially

a child.

Restraints are wrong because they put a person in danger, not

safety. Restraints are wrong because they do not correct, they punish.

Restraints are wrong because they rob the person and the caregiver of their

dignity and humanity. Restraints are wrong because they stop us from striving

for more humane ways of treating people with serious disabilities.

I come here today to raise my voice, to be heard, to say no more

harm, no more hurt, no more inhumanity. No more restraints that kill. There

is a better way.

Thank you.

ASSEMBLYWOMAN WEINBERG: Thank you very much.

Assemblyman Payne.

34

ASSEMBLYMAN PAYNE: Yes. Mr. Fesel, we have heard, a

second time, that you were in restraints. I think the person that testified before

you said, also, but that the people he saw in restraints was because they got in

a fight with campus policemen, etc., etc., etc. You said you were placed in

restraints. Under what conditions? Is it just used willy-nilly, or under what

conditions have you been placed in restraints?

MS. BLISARD: Thatís going to take a minute for Robert to put it

into the--

ASSEMBLYMAN PAYNE: Okay. We can move on to the next

person and then get back to Robert, then, for an answer.

MS. BLISARD: Yes, if you want to do that.

ASSEMBLYWOMAN WEINBERG: Go ahead. Who is the next

person?

MS. BLISARD: These are the three people that are testifying from

our group.

ASSEMBLYMAN CRYAN: Did you say Robert works? Does

Robert work?

MS. BLISARD: Yes, he does.

ASSEMBLYMAN CRYAN: What does he do?

MS. BLISARD: Do you mind if I speak for you, Robert?

MR. FESEL: (affirmative response)

MS. BLISARD: Okay.

Robert works with young children. He works with pre-school and

kindergarten children. He tells them stories.

ASSEMBLYMAN CRYAN: Oh, yes.

35

MS. BLISARD: He works with them that way. He also has

worked at the Daily Planet. No, you donít work there anymore.

Ed works at the Daily Planet. Okay.

ASSEMBLYMAN PAYNE: Ms. Allen, may I ask--

Is your red light on? (referring to PA microphone)

MS. ALLEN: No.

ASSEMBLYMAN PAYNE: Itís not.

Can you turn yours off, please, Mr. Cryan.

MR. FESEL: Just I have cerebral palsy.

MS. BLISARD: "Just because he has cerebral palsy." Robert is a

man of few words. (laughter)

ASSEMBLYWOMAN WEINBERG: Robert, your few words are

doing a great deal of good up here. So, donít worry about that. I wish we had

more people of few words. (laughter)

MR. PALERMO: As for me, Iím very boisterous.

MS. BLISARD: I think thatís his answer.

ASSEMBLYWOMAN WEINBERG: Are there any other questions

here? (no response) No, okay.

Thank you very much.

I know that this was probably not an easy trip for all of you to

make or come into this crowded room, and we appreciate your being here and

your input.

Thank you.

MS. ALLEN: Thank you.

MS. BLISARD: Thank you.

36

ASSEMBLYMAN PAYNE: Dr. Judy Favell. When weíre able to

clear the table, youíll be next. Identify yourself and your affiliation, please.

Okay, why donít you go right ahead and identify yourself, please.

J U D I T H E. F A V E L L, Ph.D.: Yes. My name is -- oops.

ASSEMBLYMAN PAYNE: The red light on, please. (referring to

PA microphone)

DR. FAVELL: Okay, good.

My name is Dr. Judy Favell, and I am a licensed behavioral

psychologist and certified behavior analyst. For 30 years, I have devoted myself

to the field of developmental disabilities. During my career, I have assumed a

variety of roles, including President of the American Psychological Associationís

Division on Developmental Disabilities and President of the International

Association of Behavior Analysis. And of these and other offices and roles that

I have assumed across the years, the role Iím most proud of, though, the one

that I most cherish, is that as a person and a professional who has assisted

individuals with developmental disabilities to understand, and then to

overcome, their very significant life-threatening, dangerous problem behaviors.

Iím proud, for example, for helping David conquer his problems

with aggression. His aggression had injured countless individuals, including

sending them to the hospital and putting them on permanent disability. And as

a result of the danger he posed, he was kept in virtual isolation in his room for

18 years.

Iím proud of helping a young woman named Lisa overcome her

self-injury. The paradox that Lisa presented was, here was this beautiful spirit

and beautiful face contrasted with multiple scars across her arms and chest that

she had inflicted upon herself by biting, sometimes baseball-sized, pieces from

37

her own flesh. And of course, in order to protect Lisaís life, and literally limb,

she, too, was kept in restraint, not of the sort that weíre speaking of today, but

in chronic restraint 24 hours a day, seven days a week, missing all of lifeís

experiences.

Now, David and Lisa, if you met them today, would bear no

resemblance at all to the people Iím describing to you. They rarely, if ever, have

episodes of these sorts of problems with aggression or self-injury. They lead full

and good lives. They enjoy their jobs. They have friends. They participate

fully in community activities. Lisaís favorite is strutting her stuff in shopping

malls with her new, slender body, now that sheís lost a full 100 pounds from the

340 pounds she weighed during the days when she was self-injurious. And

David will participate in any community activity, so long as itís out in the

sunshine and out of his room.

Now, the means and methods that helped David and Lisa succeed

here are not mysterious. They achieved these successes through a process that

anyone of us would want if we walked in their shoes. What would I want if I

were Lisa? What would you want if you were David? First, Iíd want to be free

from my problems that had scarred me and left me self-conscious when in malls.

I donít want my time wasted with hype and hopes about treatments that may

not protect me and may not be effective. And what that means is, if we are to

phase out restraint -- and we all desperately want to do that -- then we need to

ensure that what is proposed as an alternative is equally effective in protection

and in treating behavioral problems of this kind. Because the reality is that

there are very few alternative treatments at this point in time.

So before we turn our backs on some of the strategies that may,

indeed, employ restraint, if I were Lisa Iíd want proof that there exists

38

alternatives that can achieve the same ends. Second, Iíd want a full array of

options to include in my comprehensive treatment plan. I would want lots of

positive reinforcement to learn new skills. Iíd want good, medical input to

address my biological needs. And of course, I would want an enriched life. But

if these and other elements of comprehensive treatment arenít enough to ensure

safety and reduce my problems, I would want the option of adding restraint to

my program. Just as in surgery and other invasive procedures, I want to have a

chance to assess if the risks are worth the rewards. I donít want someone

categorically removing options from my plan. And while there are some who

claim restraint is not therapeutic, there are others that absolutely insist it is.

And who would I want to help me make these decisions about my

treatment? I would want those closest to me, those who love me.

ASSEMBLYMAN PAYNE: Excuse me, Doctor. Please wind down.

Your time has expired.

DR. FAVELL: Okay, sure. I would like my parents to be the ones

who make these choices, not other professionals or advocates. And most of all,

I would like to live in the community. I would not like the very interventions

that are designed to be my treatment to, in fact, incarcerate me in hospital

settings.

Thank you.

ASSEMBLYMAN PAYNE: Thank you very much.

Any questions for the doctor? (no response)

If not-- Oh, Iím sorry.

ASSEMBLYMAN CONAWAY: You raised some very interesting

points. In medicine, we study and look for outcomes, and we decide based on

a risk-benefit analysis whether or not we are going to proceed with a particular

39

treatment. We recommend to patients what weíre going to do based on the

evidence. Thatís what we do.

And youíre right. That, perhaps, in a desperate situation, you might

try something unstudied. But most of the time, most people, given the

circumstances, will choose to employ things that are well-studied and supported

by research and science. Iíd like you to comment on -- letís see, itís in the bill

under the definition of mechanical restraint. And in your experience, I noticed

that, included in that definition, it says, "the use of a domed or enclosed crib

shall be prohibited." I presume that means in all circumstances. Iíd like you to

comment on that and what you think the effect of that might be, as regards risk

benefit and the safety of the person that might need that kind of closure.

And also, on the point I raised earlier with the sponsors, regarding

the use of aversive techniques, whether or not there ought to be a consideration

there that the nonapplication of the technique would, in fact, be worse for the

patient. I think you suggested that in some of your comments. But if you could

comment on those or that wording, I would appreciate it.

DR. FAVELL: Certainly. The use of cribs and domed cribs and so

on, and enclosures, are first of all, I think, included in most definitions of

mechanical restraint, because historically they were associated with misuse of

restraint where children and adults were kept in enclosed cribs. They are,

though, distinct from the methods and means of mechanical restraint that, I

believe, we are trying to address here. And that is, the brief application of

restraint used only until an individual is calm. That is the sort of restraint that

I think we are speaking of, that I believe does have a role, possibly in

emergencies, but best of all, in planned programs that carefully consider the

alternatives and make arrangements properly before restraint is used.

40

So cribs and those sorts of restraints are often included, but they are

not used in the sense that we are typically talking about using them, as part of

a comprehensive treatment program.

ASSEMBLYMAN CONAWAY: But theyíre excluded here. Theyíre

excluded here under this bill, their use.

DR. FAVELL: Oh, I thought they were included. Oh.

ASSEMBLYMAN CONAWAY: It says, "the use of domed or

enclosed cribs shall be prohibited." And what Iím asking you, based on your

experience is, is that kind of a prohibition going to lead to a serious injury by

some child when this canít be used? Thatís my question.

DR. FAVELL: Oh, I see. Iím sorry.

I think that, in fact, there are -- because of the history of misuse of

that technique, they are widely prohibited. But there are, typically, mechanisms

by which, certainly, arrangements can be made to make a crib for, say, an

individual. I think that bears on the second part of your comment and

question, and that is the definition of aversive and so on. I think it is our

position that not only should decisions be made principally by parents, in

consultation with appropriate professionals, but those decisions should stay as

close as possible to individual cases. And so that what is appropriate for one is

inappropriate for another. And that is part of the basis on which Iím concerned

as a psychologist and a behavior analyst, also as a parent, that someone would

remove, categorically, my right to choose among possible interventions for my

childís behavioral issues.

ASSEMBLYMAN CONAWAY: Just one last question, if I may,

Madam Chair.

41

There was testimony here that talked about the, I guess -- it was a

blanket statement -- that some behaviors are misinterpreted or that

professionals, I guess, either refuse or are not trained to look behind the meaning

of these behaviors, which I, as a professional, find a little offensive. But can

you speak to that issue, about how behaviors are used by those who have

developmental disabilities, and your experience, as a professional, and how you

deal with those kinds of things?

DR. FAVELL: Certainly. Part of any reasonable, well-conceived

treatment plan is what we call a functional analysis, which deliberately and

carefully asks what the meaning of these behaviors are and what are the

conditions and the contingencies that precipitate them. And then in our

treatment we try to teach alternatives.

For example, if by using aggression Iím trying to communicate my

needs, then my treatment plan should absolutely include methods of teaching

me alternative ways of communicating. That is just good, basic treatment. But

I believe that the contrast between using restraint and understanding the

meaning of behavior problems is no longer appropriate. In this day and age,

both are attempted. We always attempt to understand the behavior, and we

always attempt to, principally, emphasize positive procedures in its treatment.

But that does not deny occasional need, in a few cases of very serious problems,

for the use of brief and contingent restraint. Itís no longer either/or.

ASSEMBLYMAN CONAWAY: Thank you.

ASSEMBLYMAN CRYAN: Thank you. Thank you, Doctor.

For Lisa and for David, if I can redirect, what types of restraints did

you use?

42

DR. FAVELL: They were different. In Davidís case, there is a kind

of wrapped arrangement where he assists himself to lie down and then he is

wrapped in a cloth that enfolds him. And in Lisaís case, because of her

self-injurious behavior, especially when she was in restraint, those restraints

consisted of the Posey Company restraints on the wrists and the ankles.

ASSEMBLYMAN CONAWAY: You have to explain Posey.

ASSEMBLYMAN CRYAN: I guess I just--

DR. FAVELL: Theyíre basically -- and theyíre not handcuffs.

Those are reserved for a very different issue. They are soft, but leather, restraints

that are applied to the wrists that would keep Lisaís hands away from her face

and her arms, down by the side of her body.

ASSEMBLYMAN CRYAN: Doctor, in the bill we have a comment

here that, "the period canít exceed one hour." You mentioned, in answering Dr.

Conawayís questions about brief and repository -- I think it was the term you

used -- is an hour adequate in terms of what--

DR. FAVELL: Typically, an hour is far longer than anyone needs.

Once an individual learns how to calm, and the fact that he is, or she is,

protected during this time, often restraints can consist of a minute or two.

ASSEMBLYMAN CRYAN: My last question is, if you could just

elaborate -- what happened to David? What did you do? In a cloth? I just

didnít understand it. David.

DR. FAVELL: It was a -- whatís called a wrap mat, and it basically

enfolds him. Essentially, his periods in restraint were no longer than 15 to 17

minutes, where upon he would calm and was very obviously calm, and then he

would resume his activities.

43

ASSEMBLYMAN CRYAN: Do they still have restraints as part of

their treatment today at all?

DR. FAVELL: Very occasional use, yes. And sometimes we can

eliminate them altogether, which is what, of course, the point is. Itís part of the

reason why we are less supportive of emergency use of restraint, because we

want it to be planful (sic) and carefully and deliberately designed. And if it is,

over time restraint should be necessary less and less frequently and for shorter

and shorter durations.

Now, in Lisaís case, I cannot remember the last time she attempted

self-injury. So thereís a case where, though restraints may still be in her formal

written plan, it is rarely or never used.

ASSEMBLYMAN CRYAN: Thank you.

ASSEMBLYMAN PAYNE: Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: You just said that you opposed

emergency-- I think maybe what you meant was you opposed restricting it to

emergency use.

DR. FAVELL: Iím both opposed, restricting it to emergency use,

but, also, if given my druthers, I would rather restraints be used in a planned

way with a written program, but allows parents to consent.

ASSEMBLYMAN THOMPSON: Youíre not opposing emergency.

Youíre saying you rather the plan was there.

DR. FAVELL: Exactly.

ASSEMBLYMAN THOMPSON: But if an emergency situation

occurs, obviously you support it.

DR. FAVELL: Exactly. Exactly.

ASSEMBLYMAN PAYNE: Assemblywoman Weinberg.

44

ASSEMBLYWOMAN WEINBERG: Doctor, I have a question,

and maybe gets to the root of some of this. I understand what you are saying

about using restraints for a person who might cause himself injury, and part of

his or her plan to teach them how to get over that is to restrain them during that

time. Do you believe that restraints should ever be used as part of a punishment

routine?

DR. FAVELL: Well, the word punishment is a difficult one,

because its lay term is laden with such a volatile emotional meaning. I believe

that restraints should be used to assist in decreasing a behavior problem. And

technically, that could, in fact, be construed as punishment, because thatís the

technical term for punishment. But because of the emotional overlay, I prefer

to talk about the use of restraint as a procedure called time out from positive

reinforcement, and thatís really what it is. It means that if I become self-injurious

or aggressive, the intervention will protect me from myself or protect others, but

during that period in which I am in restraints, I can also not get inadvertent and

accidental reinforcement, for example, by intimidating others, or by actually

being able to bite a piece of my own flesh. So, though I donít want to hedge on

the term punishment -- and technically it could constitute punishment in that,

when it is used, the behavior problem for which itís used may decrease -- the

more technically appropriate, and I think a less emotional way to view it, is as

time out from positive reinforcement. Does that make it worse?

ASSEMBLYMAN CONAWAY: Thatís great.

ASSEMBLYMAN PAYNE: Assemblywoman Pou.

ASSEMBLYWOMAN POU: I just have a real quick question.

Doctor, how often did you feel that you needed to restrain David?

45

DR. FAVELL: Originally -- and again, David, had literally, had his

own wing of a developmental center, and originally David had aggressive

episodes that were upward of 25 to 30 a day.

ASSEMBLYWOMAN POU: Okay.

DR. FAVELL: And now he goes months and months and months

between episodes, and he is in full access to peers, staff, and the community.

ASSEMBLYWOMAN POU: Thank you.

ASSEMBLYMAN PAYNE: Let me -- I want to move on, but I do

have-- Iím going to take the prerogative of the Chair and just ask a question.

Doctor, you said that David has now improved to the point that

he is, now -- that he had restraints. You donít want to use the word

punishment, so we call it something else maybe. Iím not sure.

DR. FAVELL: Well, time out, yes.

ASSEMBLYWOMAN WEINBERG: Time out from positive

reinforcement.

ASSEMBLYMAN PAYNE: Time out from positive reinforcement.

Weíre at this point today because of the alleged abuses of many

people who are clients in our institutions, etc. Weíre at this point because of

that. Weíre not here because there are so few people who have been abused.

Weíre here because, apparently, there are a lot of people who feel that their

relatives, their children, etc., have been restrained, supposedly, as part of

treatment, or what have you. That there seems to be, on the part of some, the

proclivity to use restraints, rather than treatment, for instance. I wonder

whether or not in your experience -- yours is very positive, obviously -- but in

your experience, do you know of any of your colleagues or any of these other

facilities where there have been abuses, where there has been punishment, where

46

there have been these kinds of restraints that are used as so-called treatment,

etc., rather than positive behavioral support.

I mean, weíre here today because of -- thereís a bill thatís called

Matthewís Law, I believe. Because thereís some who have said that he was

restrained, etc., and there may be others. Let me ask you whether it is common

practice for us to -- whether thereís so few people, so few facilities that are

abusing this restraint, or not, to justify this hearing today, for instance?

DR. FAVELL: In my professional experience, and I have been,

again, not only a clinician and a researcher, but Iíve also done a great deal of

work in national policy, and also consultation and work for the Justice

Department-- In my experience, the abuses involved in restraint are, indeed,

rare, and, in fact, can be held up against abuses in other kinds of practices that

can range from surgery to the use of meals with individuals.

So I think the issue that was raised, and I was not responsive to,

about holding the abuse associated with one intervention against abusive or

improper practices in other domains, and against what happens if an

individualís behavior problem goes unresolved -- I think thatís the issue. No

one made a decision to abuse David by isolating him for all of those years.

They were afraid. People were in the hospital. They were out on disability

because of his aggression. So there is a tacit and, Iím sure, quite gradual

movement toward leaving David in his bedroom. I view that as an egregious a

practice as restraining David, initially for 20 to 30 times a day, to help teach

him that those behaviors were not acceptable and could not go on, while we

rewarded him heavily for the alternatives.

So I think itís rare, and I think we have to hold the risk of abuse

and misuse against the risks if we do nothing, or against the risks associated

47

with other sorts of interventions, including some of the most positive. Because

I can mess with your mind by messing with your positive reinforcers, just as

surely as I can by messing with threatening you with restraint.

ASSEMBLYMAN PAYNE: Thank you.

Just one last thing, and that is the behavior of David or others-- Do

you think David definitely was an aberration of some of the reason why weíre

here today; or do you believe, as many people do, apparently, that there are

abuses of the use of restraints that seem to be more than just at very rare

occasions?

DR. FAVELL: I think that many of the measures -- in the joint bill

are going to help strengthen mechanisms that should already be in place. But

I have hope that parents are never forgotten in this process, because they are the

best defense against abuse for their children. And then, equal to it are good

oversight and monitoring. And equal to that are good reporting to the division

and to the State about what the practices are. And then, I think, with those

things, we will, indeed, not risk throwing out the baby with the bath water.

ASSEMBLYMAN PAYNE: Okay, thank you.

DR. FAVELL: Thank you.

ASSEMBLYMAN PAYNE: Dr. Conaway.

ASSEMBLYMAN CONAWAY: One other risk Iíd like -- and Iím

not sure Iím going to get to ask it of others who might come forward, and that

is, you practice according to the catechism, if you will, of your profession.

Youíre held to the standards of your profession, arenít you?

DR. FAVELL: Absolutely.

ASSEMBLYMAN CONAWAY: So one of the things that concerns

me as -- in the face of interferences and your professional practices -- is what

48

risk that might put you, in terms of professional liability. That is, if you are

prohibited from doing things which you know to be in the best interest of the

patient and then the patient gets injured, are you then placed at some risk

professionally, professional liability, etc.? So is there a danger in the things that

you see in this bill that will put you at professional risk in terms of liability?

DR. FAVELL: Yes, indeed. And I think the one that is most

concerning is the definition and the composition of the human rights committee,

the county human rights review board. That, potentially, with individuals

appointed to it who are not familiar with the clients involved, or who are not

expert in what they are pronouncing, could effectively overturn decisions by

families and by the interdisciplinary teams and by the providers who are

expected and responsible for providing these services. If I come up with a plan

with a family, and the provider feels that they can do it, and then a human

rights review board overturns that, because of ideology or their own value

systems or anything else, then, in fact, I think we are not only jeopardizing me

as a professional -- and I wonít participate under those conditions. Much more

importantly, I think we are jeopardizing the well-being and the progress of the

individual involved.

ASSEMBLYMAN PAYNE: Weíre not saying that the human rights

committees can veto one person -- that cannot veto the entire plan. The people

that are on this human rights committee, or whatever, are representative, arenít

they? Do you believe that only people who are professionals should be on this

committee?

DR. FAVELL: No, not at all. But New Jersey has had, and

Developmental Disabilities has had, for many years, human rights committees

that have functioned very, very well in a review and an advisory capacity. Most

49

of the facilities and agencies I know do have human rights reviews of their

programs, and that is, in fact, regulated by the division circulars and rules. So

human rights review is already required. It is this addition of insisting on it

being a regional body, being appointed from afar, and, in fact, insisting on the

role of an advocate from an organization that, I think -- and giving them

approval capability that, I think, begins to add greater jeopardy to the process

of getting decisions made. Iím all for human rights committees, and I believe

they have served this State and the individuals within it very, very well.

ASSEMBLYMAN PAYNE: Yes.

DR. FAVELL: Thatís why Iím perplexed as to why it needs to be

changed.

ASSEMBLYMAN PAYNE: Yes. I donít have the same fear about

having the inclusion of others on this Committee. I donít think that this will

have an inordinate amount of power to veto these things. I think that itís a

matter of opinion here. The Commissioner is the one who appoints these, and

theyíre not appointed before.

Thank you.

DR. FAVELL: Thank you.

ASSEMBLYWOMAN WEINBERG: Doctor, thank you very

much. I think youíve been very enlightening. You were when you visited my

office, and were all the people who are dealing with professionals, we might

have less problems. But I would like to say that it is really the lack of

accountability that has created some of these problems throughout our

bureaucracy, whether weíre talking this particular population or the others that

have, unfortunately, been in the news of late. So thatís one of the things weíre

trying to correct in these bills.

50

DR. FAVELL: Oh, I understand.

ASSEMBLYWOMAN WEINBERG: Thank you very much.

DR. FAVELL: Thank you.

ASSEMBLYWOMAN WEINBERG: The next person is Tom

Bruno, who represents CWA Local 1040, and then weíre going to call Janice

Roach.

T O M B R U N O: Good afternoon, Madam and Mr. Chair. As you know,

my name is Tom Bruno. I come to you today on behalf of CWA Local 1040ís

members, nearly 5,000 of which will be directly impacted by the proposed

legislation you have before you today. Iím also a 24-year veteran of the

Department of Human Services, having managed two aggressive units at

Hunterdon Developmental Center.

The Bancroft events that surfaced several months ago and gave rise

to this legislation served to wake up a department that had lulled itself into

complacency. No one working in this industry was surprised by the unfortunate

tragedy. It had always been a question of when, rather than if. I recall

testifying before the Joint Senate and Assembly Budget Committees at the time

when Governor Whitman announced a second round of drastic cuts in the

Departmentís enforcement staff, which incidentally lends credence to Madam

Chairís concern about the lack of accountability. And that, I believe, is where

it really started.

I stated then that the cuts were a prescription for disaster, and I

likened it to rollerblading toward sheer insanity without the benefit of protective

gear. Regrettably, that statement was prophetic, and we find ourselves at this

juncture today.

51

Local 1040 is pleased to see that attention is finally being given to

the developmentally disabled. However, we have grave concerns about the main

thrust of Bills A-2849 and A-2855. Everyone agrees that restraint use needs to

be regulated and monitored. But to require the use of restraints for emergencies

only places both the client and the staff at far greater risk of injury. For that

reason, Local 1040 is opposed to the two bills as they are currently written, and

would ask that serious consideration be given to amending them before

presenting them to the General Assembly for a vote.

Webster defines an emergency as, "a sudden, generally unexpected

occurrence or set of circumstances demanding immediate action."

ASSEMBLYWOMAN WEINBERG: Mr. Bruno. I donít know if

youíve had the opportunity to look at the Committee Substitute.

MR. BRUNO: I was hearing about it earlier, but, no, we did not

have a copy. It wasnít on my notice of the hearing today.

ASSEMBLYWOMAN WEINBERG: Okay, because that does

enlarge the ability to use restraints under certain kinds of conditions.

MR. BRUNO: And actually, that would be helpful. From what I

was hearing, I was anxious to get a copy, as a matter of fact. So Iíll run down

to the bill room after this.

But the definition of an emergency essentially means that an

individual with a history of aggression cannot, truly, meet the definition of

emergency, since their aggression is clearly predictable and not an unexpected

occurrence. Staff in group homes are ill-equipped to deal with an ever-increasing

population of dual-diagnosed individuals, which are being jettisoned from

institutions under the Departmentís ideological approach -- which simply asserts

that all institutionalized clients are viable options for community placement.

52

Often these workers are left alone with some or all of the group home residents,

requiring these entry level workers to try to safeguard the other clients, while

simultaneously trying to get authorization to restrain another one that is

exhibiting violence -- simply will not work, nor will a one- or two-day in-service

be the panacea to correct this.

I will say -- Iím going to, kind of, veer off my prepared statement

and just say in answer-- I was listening to some of the questions, and

Assemblyman Cryan had asked about, are there enough staff to implement this?

And I would submit that the answer to that is no. If thereís going to be-- In the

institutions, theyíre already required to do all these things, pretty much. Theyíre

required, for example, to do 15-minute checks. Theyíre required to release the

limbs 10 minutes every 60 minutes. Those are already required by division

circulars and departmental regulations. This codifies those division circulars,

apparently, for the institutions, but it also then applies them to the private

providers, which is a change.

That in itself, in answer to the question, is going to be a nightmare

for the private providers, because, frankly, they have two staffs, usually,

sometimes more, but ordinarily two staffs, except for on the midnight, which is

down to one. And if something happens, and if somebody is supposed to go out

shopping or whatever, theyíre not going to be able to leave the other group

alone, because somebody has to do 15-minute checks. Youíre going to need an

extra person there just for the opportunity to provide those 15-minute checks.

As far as the staff safety issue, we are concerned about that. And

that, again -- and I was happy to hear that in the Committeeís bill that thereís,

I guess, a provision to allow restraints to be used in, I guess, behavior

modification programs of sorts, that would be beneficial.

53

ASSEMBLYWOMAN WEINBERG: It allows restraints to be used

as part of the overall plan and with some very severe components attached to

it, including input, and subjects those to review of the human rights board that

we talked about earlier.

MR. BRUNO: Right. And I would see that as a step in the right

direction, because waiting for an emergency to arise before you actually restrain

somebody actually means youíre allowing the situation to escalate to a

dangerous level, and that does put both clients and staff at a safety risk.

None of these behavior mod programs, even as are currently written

in the institutional settings, are permitted to have the restraints -- mechanical

restraints of any sort -- without going through a whole review process. Thereís

a restraint committee. Thereís a human rights committee. Thereís countless

committees and signatures, including input from the parent, guardians, and that

kind of thing.

So this, again, codifies something thatís already being done in the

institutions. It is going to be an additional burden for the private providers, I

think, in some cases. And that is a concern.

ASSEMBLYWOMAN WEINBERG: Mr. Bruno, your time is up.

Thank you.

MR. BRUNO: Okay. Thank you.

ASSEMBLYMAN PAYNE: Thank you very much, Mr. Bruno.

May I have Janice--

ASSEMBLYMAN CONAWAY: I have a question.

ASSEMBLYWOMAN WEINBERG: Mr. Bruno?

ASSEMBLYMAN PAYNE: Mr. Bruno, thereís a question from

Assemblyman Conaway. (laughter) Unexpectedly, of course. Sorry.

54

ASSEMBLYMAN CONAWAY: Sorry.

Youíve already established, for the record, that youíre understaffed

in what youíre currently required to do. Is that right?

MR. BRUNO: In the communities and the group homes, yes. I

would say that we are.

ASSEMBLYWOMAN WEINBERG: But heís not speaking on

behalf of the State institutions now.

MR. BRUNO: In some of the State institutions, weíre understaffed,

too. But in particular with this restraint legislation, this is going to impact, even

more severely, the communities, I believe.

ASSEMBLYMAN CONAWAY: And could you comment just

about, in terms of your daily -- having worked in the area. Because one of the

things that concerns me as we legislate in this area and provide more regulation,

are the paperwork burden that -- I see it in the hospital where I work, nurses.

Can you talk about the paperwork burden that you currently have, and if you

could, sort of, succinctly let us know what part of the paperwork burden is

related to things that are associated with clinical care versus things that are not.

Because I think as we move forward in this area, we need to think about that

burden and the cost of that burden as we move forward.

ASSEMBLYWOMAN WEINBERG: Thatís not the subject of this

bill.

ASSEMBLYMAN CONAWAY: Itís not?

ASSEMBLYWOMAN WEINBERG: No.

ASSEMBLYMAN CONAWAY: All right. Never mind.

Sorry, I take that back. Iím off the topic, excuse me.

55

ASSEMBLYMAN PAYNE: Oh, thatís so unusual for you, Doctor.

(laughter)

ASSEMBLYWOMAN WEINBERG: Oh, that was easier.

ASSEMBLYMAN CONAWAY: Oh, yes. Iím easy.

ASSEMBLYMAN PAYNE: May I ask Ms. Janice Roach, please.

Identify yourself, if you will, please.

J A N I C E R O A C H: Hi. My name is Janice Roach. This is Carl

Goodman. Weíre the parents of Matthew Goodman.

Matthewís Law is named after a real person, our son Matthew, who

struggled to survive a system that completely failed him. In our opinion, he was

robbed of human dignity and his civil rights were violated, with ever-increasing

chemical and physical restraints. This must never happen again.

Matthew was diagnosed with pervasive developmental

delay/autism. His educational and behavioral challenges were such that

residential placement became vital to address this. He was eventually placed in

an internationally renown facility located in New Jersey that was to provide him

with educational and behavioral treatment that he needed to thrive. Despite

being in new surroundings, his huge expressive smile and wonderful sense of

humor touched so many lives. He was still a boy with feelings and emotions he

tried to express. He loved to dance the hokey-pokey, draw with his Magni-

Doodle, play with Play-Doh, go for walks in the woods, etc. He remembered

the name of every person he ever met.

In general, Matthew had a love for people greater than anyone

weíve ever known, until his world changed at the age of 12. While living in an

apartment and attending school on campus, Matthew contracted an unfortunate

infection that progressed to a reactive arthritis. Swollen, painful joints and IV

56

antibiotics kept Matthew bedridden the summer of 2000 in Childrenís Hospital.

A traumatic situation for any child, but for a child with autism, it was shear

torture. His greater comprehension level was contradicted by his limited ability

to express it. This resulted in Matthew communicating his enormous anxiety

and frustration by scratching and picking his ear, just as a caged bird pulls out

his feathers.

Childrenís Hospital instituted the temporary use of restraint to

further prevent self-injury. Upon discharge, the New Jersey facilityís physician

requested, and was granted, verbal approval to place Matthew in arm restraints

for a few weeks, while he stayed at the medical facility to give him closer

medical attention and for his ear to heal. He would then be released back to his

apartment and back to school. Neither happened. Instead, in our opinion,

Matthew was -- faced 16 months of torture through the continuing, increasing

use of restraints.

We feel protocol designed to restore Matthew to his previous status

was never implemented. Was he then penalized with restraint because of his

unfortunate infection? Our son is not here to communicate to you the misery

and indignities he suffered, but let us tell you some of the things he endured.

We take simple things for granted. While in the restraints, he couldnít wipe his

nose. He couldnít scratch an itch. He couldnít bend his arms. He could no

longer hug or kiss myself or his father. He lived in an unfamiliar place. He

couldnít see his roommates from the apartment, and he did not attend school

as he did before. He no longer had control over anything in his life or his

environment.

Matthew -- an important point -- would tell us weekly, "Take these

things off." Matthewís sense of self-worth was gone. It became a world

57

Matthew did not understand. In the last four weeks of our sonís life, he was

engaged in a full-facial hockey helmet with black screening across his face,

again, to prevent injury. In our opinion, all it did was teach him to become

more anxious, more aggressive, and more self-injurious. He was cut off from the

comfort of a human touch or from hearing or seeing clearly. No one would

listen to our cries for help. Slowly, the will to live began to drain away, as he

mostly laid on the floor.

The Division of Developmental Disabilities obtained videotape

from the final six days of Matthewís life from the facility. They showed

Matthew was forced to sleep with arm immobilizers on, socks covering his

hands, staff dragging him.

In conclusion, the Division of Developmental Disabilities

substantiated abuse and neglect of our son. Over this dreadful 16-month

period, we feel our son experienced a terrible trial as he died piece by piece.

Week by week, his personality withered away. I would become physically sick

on the sidewalk after visiting my son at times. Please donít misunderstand me.

I was not sitting idly by. I worked day and night to find another facility and

contacted numerous agencies in two states. No matter how hard I worked, no

matter how many agencies I contacted, I couldnít protect him from the abuse

and eventual death.

Matthewís Law will help our institutionalized family members, and

will hold those culpable who ignore this law. When we were asked to sign for

the continued use of restraints, I was accompanied by my lawyer, signed against

my will, as it was a condition of continued placement. It was sheer torture for

me. If a parent is placed on a human rights committee, will the parent be

willing to jeopardize their childís placement? Or, if the Division of

58

Developmental Disabilities appoints county-based human rights review boards,

will they be able to adequately protect, monitor, or even enforce the basic care

and safety requirements for the developmentally disabled?

I had reported my distress concerns on numerous times and received

no assistance. On Tuesday morning, February 5, two days before Angel Flight

would fly Matthew to a new facility I had found, I received news that no parent

should ever hear. The nurse called from the medical facility to inform me that

they could not detect Matthewís vital signs. Upon arrival at Childrenís

Hospital, I found my son unconscious, but still encased in the arm

immobilizers. His full facial helmet lay nearby. Thirty-two hours later, our

14-year-old son lay dead, never regaining consciousness. He died as a result of

sepsis pneumonia and acute respiratory distress syndrome.

Shortly thereafter, we discovered that 911 was never called. He was

not transported by ambulance to the nearest emergency room. I went to visit

Matt, Sunday before he died, to tell him I finally found him a facility that

offered to provide him with quality of life. We didnít make it.

Matthewís Law is a tribute to our sonís life, just as Meganís Law

and Amber Alert happened to their families. It is more than that. It can be a

law that offers legal protection to individuals who have been classified as

inferior, useless, a burden to society. Somehow society is under the illusion that

the developmentally disabled do not love, do not feel pain, and do not have

dreams and desires. In the end, it really doesnít matter if restraints are gloves

on your hands, socks on your hands, arm immobilizers, full helmets, or

ammonia squirts in a personís face. Itís all abuse. It destroys the value of

human life.

59

In closing, our sonís headstone is engraved with "Wind Beneath My

Wings," as Matthew, for what he endured, will always be our hero.

Thank you.

ASSEMBLYMAN PAYNE: Thank you very much.

Are there any questions?

Assemblywoman Weinberg.

ASSEMBLYWOMAN WEINBERG: I have a question.

Janice, thank you for coming forth.

MS. ROACH: Thank you.

ASSEMBLYWOMAN WEINBERG: You know, we had many

meetings over this issue. But we talk in terms of Committee Substitute, in any

event, as well as one of the other bills about parent input into the plan. From

what Iím hearing, youíre saying that there really was no appropriate parent

input, because you were told if you disagreed with this you would have to move

your son from this facility.

MS. ROACH: Absolutely. I was given no choices. Absolutely not.

I was given no choices. It was, "If you donít like it, heís out tomorrow."

ASSEMBLYWOMAN WEINBERG: And thatís what was said to

you.

MS. ROACH: Absolutely.

ASSEMBLYWOMAN WEINBERG: You would have had 24 hours

to remove him.

MS. ROACH: Right.

ASSEMBLYWOMAN WEINBERG: Okay.

ASSEMBLYMAN PAYNE: Let me ask, do you know whether or

not-- Youíre affiliated with other people who are advocates and interested in

60

this hearing. Are there others who have expressed the same thing, that the

condition of continued placement is that they must be compliant? Is this

something else that youíve heard or was this just in your case?

MS. ROACH: Absolutely. Thatís one of the most serious issues --

is that it does not become a choice. A facility, if theyíre allowed to use the

restraints and continues to believe in the restraints, as opposed to positive

approaches, they are not going to just ask a parent to agree and then quickly be

willing to do something different. In my opinion, restraints are the easy way

out. But what does it teach? Thatís the most important point. What do they

teach? They taught Matthew to become more aggressive, to have more anxiety,

to pick more. So I think, even some of the parents that might look at a basket

hold as an immediate cure for the problem are not looking at the long-term of

increased anxiety, increased aggression.

Why shouldnít we expect more from staff that work with these

people in concentrating on positive approaches?

ASSEMBLYMAN PAYNE: Did you say that you reported-- We

mentioned a human rights commission, I think. That was in existence, is in

existence, etc. Were you in contact with this commission?

MS. ROACH: I was completely out of the loop of any committee.

I had asked numerous times to be a part of a human rights committee, to attend

one behavior management committee, and I was told that they were not open

to parents, period.

ASSEMBLYMAN PAYNE: Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: I see three things that you report

here. Weíll call it, sort of, generalized abuse, excessive use of restraints, and the

lack of an ability to contest what they had for your child. Iíve asked the

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sponsor here -- related to the same thing youíre saying, Assemblyman Payne --

would you envision the review board as a place where parents could appeal

what is being done to their child or the way itís being handled, as opposed to

reviewing an initial IHP, for example?

ASSEMBLYMAN PAYNE: Assemblywoman Weinberg.

ASSEMBLYWOMAN WEINBERG: Yes. The Committee

Substitute, first of all, limits the use of the restraint to one hour. We heard

professional testimony, a little bit earlier from the prior doctor, that probably

one hour is too long. It should, generally, be 10 or 15 minutes. In this

particular case, this young man was kept in restraints many hours and many

days.

ASSEMBLYMAN THOMPSON: Iím saying, if the parents

disagreed with--

ASSEMBLYWOMAN WEINBERG: But I want to talk about all --

thereís a whole variety of issues around it. And, yes, you could appeal. Now,

the human rights -- these county advisory boards are appointed by the

Commissioner of Human Services. Theyíre not elected. Itís an appointed board

by the Commissioner of Human Services, and it, specifically, has, beside a

parent and an advocate, it has professionals on it, as outlined in the bill. It also

-- whoever reviews the case canít be associated with the institution involved.

ASSEMBLYMAN THOMPSON: But what Iím saying is that,

while a plan may be submitted for review, if a parent has a disagreement with

the plan or the treatment thatís being given, can they go before this board and

ask them to consider their complaints or comments? Would you like me to

repeat the question?

62

ASSEMBLYWOMAN WEINBERG: No. I got the question. It

was the answer I was having a problem with. (laughter)

ASSEMBLYMAN THOMPSON: In other words, can a parent

request an appearance at that meeting?

ASSEMBLYWOMAN WEINBERG: Yes. The original plan that

is worked out on behalf of the client, or the patient, as the case may be, would

be reviewed by this board. This bill does not give -- specifically allow them to

come before the board to ask for an overrule of this. Itís something that we

might consider, though.

ASSEMBLYMAN THOMPSON: That was what I was going to

suggest.

ASSEMBLYWOMAN WEINBERG: Yes.

ASSEMBLYMAN THOMPSON: Thank you.

ASSEMBLYMAN PAYNE: Yes.

ASSEMBLYWOMAN VANDERVALK: Thank you.

Iím very sorry what you and Matthew had to go through. So where

do we go from here? I think the previous question and answer should shed a lot

of light to the future.

Are we going to hear testimony from the Department of Human

Services? No?

ASSEMBLYWOMAN WEINBERG: I donít think so.

ASSEMBLYMAN PAYNE: I think there are representatives. Are

there representatives from the department here? Yes, back there. They may be

able to answer some of the questions.

ASSEMBLYWOMAN VANDERVALK: Yes. I know, from some

previous work that Iíve done, that the department has an excellent way of

63

working with parents when theyíre trying to get them into group homes or into

housing, in general -- out of institutions into housing. Because they work with

the parents -- and it sometimes takes longer for permanent placement that way.

But I was always impressed with the fact that they worked so carefully and

closely with the parents. So to hear that there is no parent input or the parents

are not being heard in an institution, I think thatís a major, major gap in our

system.

ASSEMBLYMAN PAYNE: Yes, I agree. One of the reasons for this

hearing is to find out-- I was going to ask Ms. Roach-- One of the reasons for

the hearing is to get suggestions, ideas, for us to consider, and before we bring

these bills forward for amendments, etc. Youíre quite right. The fact that there

is no place for a parent to have redress, to come before a body to express this,

and your attempts over the period of time were rebuffed -- I think this is

something that we need to consider in any kind of final passage of any

legislation.

ASSEMBLYWOMAN VANDERVALK: Thank you.

ASSEMBLYMAN PAYNE: Assemblywoman Pou.

ASSEMBLYWOMAN POU: Thank you, Mr. Chairman.

I just wanted to follow up on some of the statements that have been

said here today. I know that in your testimony you mentioned that -- the

number of attempts that youíve made to address your sonís concerns, and your

desire to serve on some of these boards or committees, were constantly

overlooked or denied. Were you ever, during any time of your sonís period

there, ever brought in and discussed, or made a part of, his progress? Was there

any report, or were you ever given any opportunity to have an input with regards

to what -- the condition that your son was in during that time?

64

MS. ROACH: Okay. Let me just clarify that I hadnít asked to

become a member of a committee. I had just asked to be able to attend a

meeting where they were going to talk about my sonís treatment plan so that I

could-- Even if they wouldnít let me comment, I could, at least, hear what was

being said and where the rationale was for the restraints. So they had indicated

to me that I was not able to be a part of that, and that was period, end of story.

As far as being kept updated, I canít stress enough that-- As much

as Matthewís rights were totally taken away, and he died piece by piece, every

right that I ever had as a parent was completely taken away, completely. Itís

very difficult, because it certainly has made its mark on me also.

ASSEMBLYWOMAN POU: Mr. Chairman, I canít emphasize

enough some of the comments thatís been heard and stated here today. Clearly,

when a parent is not even permitted to partake and even listen in to some of the

conversations or some of the progress reports that are being given with regards

to that childís development and that childís treatment, thatís a real alarming

concern to all of us. Thatís something that we certainly need to be extremely

mindful of it, and do whatever we can to make this come to the surface and

provide the most-- whatever it needs -- strengthening at the very, very highest

level. We need to keep that in mind.

I just want to thank the parents. I think youíre very courageous.

Itís been a very difficult time for you both, and I just wanted to express my

sincere appreciation for you coming forward and providing us with your

knowledge and insight on this.

Thank you.

ASSEMBLYWOMAN WEINBERG: Assemblyman Conaway.

65

ASSEMBLYMAN CONAWAY: Yes. I, in the first instance, want

to express my sympathy and regret. I canít imagine how difficult this must be

for you. And also, to associate myself with Assemblyman Pouís comments on

your bravery in coming forward and letting us know about what has happened

to your son and for being an advocate for change.

I just wanted to make a couple of comments on some of the things

that you stated and strike me as just being, absolutely, wrong. As a clinician,

in every instance, when I make a decision or work with a patient about a

decision on treatment, that -- at least, in my own practice, and I think as part

of good practice, and whether itís in physical medicine or in medicine as regards

mental health -- that those treatment decisions and plans need to be made in

consultation with the patient and the family, and the parents, when that parent

is acting on behalf of the patient. When that doesnít happen, you get bad

medicine. You get bad outcome. And, indeed, that is inconsistent, in my view,

with good medical practice.

And so, in my view, you should have been involved at every step

of the way, indeed, every day and every moment, as occurs in acute care

hospitals when people are in the hospital for physical illness, and reviewing what

was going on with your son. And to the extent that that was denied, that was

wrong.

Let me also say that there are times -- and for the benefit of the

Committee and for those in this room -- when there will be disagreements

between clinicians and patients and family members as to the course of care.

There are processes for the folks, the people involved in that situation, to

withdraw from that situation in a way that meets with patient safety. So that

66

if there is a disagreement that canít be reconciled over care and treatment,

people ought to be given an opportunity to find alternative sources of treatment.

Now, the problem here, of course, is that you were told, apparently,

that you will need to find some alternative source the next day, and that strikes

me as absolutely wrong. Certainly, from a medical/legal standpoint, from

everything that Iíve heard, is a dangerous thing for a physician, a clinician to do

or to be engaged in. This is further highlighted and compounded by the fact that

the treatment options and alternatives are limited very often in these kinds of

settings. So it makes that process more difficult when there is a disagreement

over the course of treatment.

Lastly, let me also comment on this. I think itís going to be

instructive for how this bill is crafted, as it makes its way to the floor, that there

are differences in the use of restraint for behavioral change and the way

restraints might be used when thereís a medical condition involved. We may

need to look at, in consultation with professionals, some way of making a

differentiation there, when you have a medical illness, because of an infection

or a broken bone or something that might require something that one will

classify as a restraint, versus a restraint that might be involved in a behavioral

program, just as a point of information.

But, again, I have been very moved by what you have presented

here today. I think itís very valuable to us in what we need to do in bringing

reform to this area. Again, and echoing what Assemblywoman Pou has said,

thank you for your courage.

ASSEMBLYMAN PAYNE: Thank you, Assemblyman Conaway.

Assemblyman Rooney.

ASSEMBLYMAN ROONEY: Thank you very much.

67

I want to express my sympathy also. Itís a very moving story. And

when I first heard about it, I was extremely upset. I go back a long ways with

DDD. In fact, I authored the original legislation that created the Division of

Developmental Disabilities. Prior to that, it was the Division of Mental

Retardation. And none of the services that go out today would have been

possible without that. I feel very proud of that legislation. It really, really

upsets me to hear something like this, that under contracts that we have with

these agencies that something like this could happen to the most vulnerable of

our citizens. So, again, Iím personally taken aback by that.

I also have a different perspective. One of the reasons that I did

that legislation at that time was because I was involved with these three

organizations -- well, actually, at the time, it was two. It was both New

Concepts and Spectrum, and now Life Opportunities. All of these organizations

-- I want to say this, because I donít want any broad-brush picture painted of

other organizations because of what Bancroft has done -- these are organizations

-- are formed-- They were absolutely created by the parents. They still have

involvement and, basically, theyíre run by the parents of all the clients in these

groups.

The parents have first and foremost and final say of what happens

to their children. Unfortunately, you didnít have that opportunity. You had a

for-profit organization. And for profit, they sacrificed, again, one of our most

vulnerable. So I just want you to understand if this law is passed, Matthew will

have his name on it, and it will be a tribute to him for bringing it to our

attention. We need this kind of a situation. Unfortunately, legislators need this

hit over the head, of someone being the sacrificial lamb, in this case. I just want

to tell you, I agree with you.

68

Again, I have to also speak up for the other organizations that are

totally innocent of what has happened to Matthew. I know that the department

has found Bancroft liable in this case -- that is was abuse and negligence. That

is your situation. Itís not a hearing on Bancroft, but I just want the

organizations to be recognized for the good that they do. This is not a

condemnation of the entire DDD process and the developmental disabilities

groups. I just want to say that from the bottom of my heart.

Thank you.

ASSEMBLYMAN PAYNE: Thank you very much, Assemblyman.

Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: I do note that in the Committee

Substitute it calls for an interdisciplinary team to develop the integrated IHP.

"The team shall consist of: the person receiving services; the legal guardian, the

parents or family members, if the adult desires that a parent and family member

be present; those persons that work most directly with the person served; and

professionals and representatives of service areas who are relevant to the

identification of the personís needs and the design of the program."

Of course, I gather this did not exist with your child?

MS. ROACH: Well, let me just be clear again -- that didnít mean

that we were never at a meeting. We were not at human rights committee

meetings. We were not at behavior management committee meetings. We had

some smaller meetings, but there were no options to us. Our input was not

there. It was, "This is how weíre going to do it. This is how weíre going to

control his behavior," and thatís it. "This is what weíre going to do."

ASSEMBLYMAN THOMPSON: The second question is, of

course, what weíre having the hearing on today is the Committee Substitute.

69

Originally, the bill -- Matthewís Bill was A-2855, which has been modified here

in the substitute. Do you have any problem with the substitute retaining the

name Matthewís Law?

MS. ROACH: I donít know that I would choose to comment on

that right now. I have full faith in Bill No. 2855. I donít know that I see a

reason to compromise it, because I feel so strongly about restraints -- just not --

restraints not teaching anything positive whatsoever. So I would, maybe, refrain

from giving you any kind of decisions on things like that at the moment.

ASSEMBLYMAN THOMPSON: Thank you.

MS. ROACH: I havenít had a chance to even look at it.

ASSEMBLYMAN PAYNE: Thank you.

Assemblyman Cryan.

ASSEMBLYMAN CRYAN: Thanks.

I think Assemblyman Thompson covered most of what I was

interested in, which was, quite frankly, your comments on the substitute.

But just a couple quick questions for you, because the substitute

still is Matthewís Law, limiting the use of restraints. So I wanted to ask,

specifically, without asking Mr. Goodman to take them back out. The helmet --

as someone who is not familiar with this area, and I donít mean to be callus or

insensitive in any way -- your son wore that how many hours a day?

MS. ROACH: Well, letís see. This was put on him the last month

of his life to further prevent him from getting at an injury on his nose. So he

was in it, I would say, the majority of his day. It was taken off for sleeping, but

it was-- Protocol was not followed. But if you wanted an accurate answer to

that, you could go back to the Division of Developmental Disabilities, and they

would certainly let you know that from the videotapes.

70

ASSEMBLYMAN CRYAN: To your knowledge, we heard

testimony earlier from Mr. Bruno and some others, that what weíre doing, in

some cases, is codifying existing rules and regulations. Was that helmet and/or

was the other restraint that you showed us with the arms and the legs, were they

removed to your knowledge? Were they removed in accordance with the rules

and regulations as you knew them?

MS. ROACH: Absolutely not.

ASSEMBLYMAN CRYAN: My other question--

MS. ROACH: That was well-documented. Thatís not my opinion.

Thatís DDDís substantiation.

ASSEMBLYMAN CRYAN: Okay. And the restraint, not the

helmet but the other, was designed to restrain Matthewís legs, arms?

MS. ROACH: Arms.

ASSEMBLYMAN CRYAN: Good God.

MS. ROACH: The other point -- I should bring it up while youíre

right on that -- is let us, please, also consider a suggestion. Is that, whatís so

important with any type of restraint is, especially -- the doctor would probably

agree with me -- that you need to, most certainly, look at any medical

conditions that might contraindicate the use of restraints. Matthew had

documented circulation conditions, body temperature issues, and

light-sensitivity issues. So those need to, certainly, be considered, especially

with putting these things on, as to what risk it is causing in other areas.

ASSEMBLYMAN CRYAN: Your boy, you mentioned, lived in an

apartment?

MS. ROACH: Yes, he did.

71

ASSEMBLYMAN CRYAN: For a second -- did he live with others?

Did others see him restrained?

MS. ROACH: Okay. No. He lived in an apartment prior to this.

He lived in an apartment on campus and went to school, and then he developed

a-- It was either strep or staff infection, that then lead to his hospitalization.

When he went back, he went to a medical unit. And, yes, there were other

people in there, sure.

ASSEMBLYMAN CRYAN: My last question is -- and, again, I was

concerned about your comments on the substitute, but Assemblyman

Thompson asked those -- were there any other restraints used on your boy, other

than the mask?

MS. ROACH: Yes. It was these things (indicating restraints), and

there were socks put on his hands, or gloves.

ASSEMBLYMAN CRYAN: Did anybody ever ask--

MS. ROACH: And chemical restraints.

ASSEMBLYMAN CRYAN: Chemical restraints?

MS. ROACH: Right. Medication to control his behavior.

ASSEMBLYMAN CRYAN: Did, in any point in the process -- and

youíve gone over this quite a bit, but just so that I clearly understand -- did

anybody say to you, "We want to do these things. We think itís in Matthewís

best interest. What do you think?"

MS. ROACH: Okay. They certainly, at times, would try to convey

that they felt in was in Matthewís best interest, but the choice was absolutely

never, ever given.

ASSEMBLYMAN CRYAN: Thank you.

72

ASSEMBLYMAN PAYNE: Assemblyman Rooney has indicated

that we are not looking to make a blanket indictment against the entire industry,

etc. However, I was going to ask, what facility was your son in during most of

this time?

MS. ROACH: Bancroft NeuroHealth.

ASSEMBLYMAN PAYNE: Where is that located?

MS. ROACH: Haddonfield, New Jersey.

ASSEMBLYMAN PAYNE: Haddonfield, New Jersey.

The other thing is that we talk about restraints. I think I heard you

mention something about ammonia squirts. What is that?

MS. ROACH: I was speaking very generally in my testimony--

ASSEMBLYMAN PAYNE: Sure.

MS. ROACH: --and although they were not used on Matthew, that

is something that is used as a restraint. I would assume that itís done for the

shock value of changing the current behavior.

C A R L G O O D M A N: Aversive behavior.

MS. ROACH: Aversive behavior, thank you.

ASSEMBLYMAN PAYNE: Aversive behavior.

Doctor, youíre here. I was wondering what was the reason or

whether that contributed to the improvement or teaching, whatever -- ammonia

squirts? Doctor, do you know about such restraint?

ASSEMBLYMAN MUNOZ: Assemblyman, yes, itís what I said

before. Itís really like the 1920s. Itís aversive therapy, squirting people in the

face with noxious stimuli, as thatís supposed to change their behavior. I mean,

some of this stuff, if you really said it out loud in 2003, youíd think you were

100 years ago. So ammonia squirts are an aversive therapy. Try squirting

73

yourself with ammonia in the face, and thatís what is done to some of these

patients.

ASSEMBLYMAN PAYNE: I suppose thatís why, as I said earlier,

this is why we are here today. And as we said, it was not a blanket indictment,

but as long as one or two-- As you said doctor, if we can save the lives of one

child, one person, we should not put a price tag on this kind of thing. I think

that our Committee, the Assembly Regulatory Oversight Committee, probably

has a job ahead of us to, kind of, look into some of these conditions. Weíre

talking about these pieces of legislation here today. But I think that we might

consider, at some future date, looking into some of these techniques, etc., that

are used, perhaps, at some of these institutions so that we can, in fact, see

whether or not -- how widespread it is and whether or not there are other

Matthew Goodmans out there waiting to happen.

So we just have to prevent that and avoid that, and we cannot

allow any of these for-profit organizations to use intimidation, not only against

the clients or their patients, but also cannot allow these for-profit organizations

to try to utilize their so-called political clout to try to restrict members of the

Legislature from looking into these things, you see. I think we should send a

message loud and clear that weíre not going to tolerate that kind of foolishness

and that thatís not going to happen.

So I want you to know, I want to thank you both for coming here

today, and that we are certainly going to do whatever we can. We thank you

for bringing this to our attention. Unfortunately, the circumstances that brought

you here were extremely tragic, but we certainly hope that weíll be able to

address a lot of these problems that have been brought up.

Assemblyman Green.

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ASSEMBLYMAN GREEN: Thank you, Mr. Chairman.

As I listened to the testimony, Iím just concerned about who

regulates, who controls, exactly, the functions of this facility? Itís my

understanding itís a profit, but at the end of the day someone should be able to

talk about who gives them directions in terms of how they can deal with

particular issues. I know today, if one of us had to go to a hospital, before the

doctor looked at us they would call our insurance company, and our insurance

company would tell them what they could do and what they canít do.

ASSEMBLYMAN PAYNE: Assemblyman, I think that might be

appropriate for Assemblywoman Weinberg to answer it.

ASSEMBLYWOMAN WEINBERG: Yes. The Department of

Human Services does the inspections and the licensing. And then this is another

problem we have in the bureaucracy that we have to address at another time.

Then it is the Department of Health that levies fines or deals with anything that

they find thatís wrong there. And then, when we talk about the licensing of the

personnel, we have to go to the Department of Consumer Affairs and to the

Attorney Generalís office, because they license the personnel. So even for us --

and I know Assemblywoman Previte, Assemblyman Payne, and I have been so

involved in this issue -- had to deal with three major departments of the

government. Three different major departments to actually get to the bottom

of who is responsible for whatís here. And that is another story which Iím

hoping weíre going to address.

ASSEMBLYMAN GREEN: Okay. My final question of the whole

issue is that--

ASSEMBLYWOMAN WEINBERG: But itís the Department of

Human Services that oversees the daily--

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ASSEMBLYMAN GREEN: Like I said earlier, whether itís a

hospital facility of this nature, the bottom line is that insurance companies donít

allow you to do anything, especially when theyíre paying, unless they sign off

on it. Iím just curious. Where did this fall through the cracks, where, listening

to her testimony, she had no one to turn to? Youíre saying to me, youíre paying

for a service or an insurance company is paying for a service, yet, still, you donít

have no input whatsoever. Thatís my question.

ASSEMBLYWOMAN WEINBERG: Well, the cracks developed

however they developed, but I think that this case pointed up where some of

those cracks are, and that is what this legislation is attempting to address.

ASSEMBLYMAN PAYNE: Thank you very much.

MS. ROACH: Let me just give a suggestion, that you might take

Chris Cleeís testimony that would follow mine, because she was Matthewís

advocate from the Arc and can explain, maybe, some of the system failure that

would address your questions.

And also, I just want to end. Iím going to just urge you to take a

vote on Matthewís Law, Bill No. 2855, today, because, please, donít have any

more tragedies happen -- and not just a death, but any abuses whatsoever. So

Iím just going to urge you to do that.

ASSEMBLYMAN PAYNE: Thank you both very much, Ms. Roach

and Mr. Goodman.

MS. ROACH: Thank you.

ASSEMBLYWOMAN WEINBERG: Thank you.

Actually, the next person we would like to call on, because I canít

find that other slip, the person you talked about -- but Dr. Cynthia Allen.

Please come forward.

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By the way, I owe a personal sense of gratitude, and I think we all

do, to Dr. Allen. She happens to be the mother of a developmentally disabled

young person herself. She also happens to be a neighbor of where my office is

in Teaneck. But I will tell you that Dr. Allen did more research and turned up

more inappropriate kinds of actions in certain places than the bureaucracy

actually did, and she helped spear us onto a course that I think is helping to

move along today. So I just want to personally thank you for the education

youíve provided.

C Y N T H I A A L L E N, D.D.S.: Okay. Iím Cynthia Allen, and Iím

speaking on behalf of Matthewís Law, Assembly Bill No. 2855. My son, Nick,

and Matthew Goodman lived together in the same facility for six months from

September 2000 to March 2001. My family and I can all testify that Matthew

Goodman was on his back, on the floor of the unit, in both arm restraints and

helmet, virtually all the time that we ever saw him. He was heavily sedated and

asleep most of the time and seemed increasingly sedated during the six months

we observed him. In fact, we did not think he was ambulatory, and were

shocked one time when he got up and walked.

I can remember only one time when I saw him without the helmet,

briefly. I almost didnít recognize him. When my parents -- my father is a

retired pediatrician and my stepmother is a licensed clinical psychologist -- came

to visit the unit, they were very taken aback and concerned about Mattís

condition. My father asked me probing questions regarding his diagnosis and

treatment, as it was hard for him and all of us to understand what was being

done to Matt and why.

In addition to observing Matt in restraints all the time, I also saw

him vomit several times on one occasion. As a health professional myself -- Iím

77

a retired periodontist -- I can testify that Matt was at very high risk of aspirating

the vomit as he was lying flat on his back, in restraints, heavily sedated and

asleep. Although Iíve not seen Mattís medical records, I understand he did, in

fact, die of aspiration pneumonia, and Iím not surprised.

But thatís not how I want to remember Matt. The image of him,

which is seared forever in my mind, is that of the affectionate, outgoing boy he

once must have been and whom I never met. On those rare occasions when

Matt was awake, he would often reach his hand out and try to talk to me, as

though pleading for help. I feel that all of us, both agencies and individuals

alike, fell desperately short in helping Matt.

But there are many other Matts in New Jersey who still desperately

need our help. My 13-year-old son, Nick, is one of them. Nick, who has severe

autism and is completely non-verbal, was a resident of a group home at that

same facility until this past June. At that time, I brought him home due to

abuse and neglect issues that have been substantiated by the Special Response

Unit of DDD. Since he returned home, he has exhibited many symptoms of

post-traumatic stress disorder and has been so fearful he has been unable to

leave the house or even the safety of his bedroom. His psychiatrist has given

him a presumptive diagnosis of post-traumatic stress disorder and has stated

that he is not to be forced from his room or the house to go to school. This

statement precipitated much confusion among the various school personnel who

were trying to work with Nick as to what force meant. But the American

Heritage Dictionary defines force clearly as, "The use of physical power or

violence to compel or restrain." Or is there, perhaps, a different definition of

force for individuals with Nickís disability?

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Nick has been subjected to restraints and aversive techniques since

he was only 3. These techniques have never led to a long-term decrease in the

challenging behaviors. If anything, they have escalated them. What starts out

as a minor incident often explodes into a major one, as staff used reactive

strategies and Nick panics and fights back, frequently requiring a four-person

take-down. My son experienced six of these so-called emergency restraint

procedures in one week last April, but no team meeting was held, no change was

made in the treatment plan, no formal report was written, just more restraints.

So what do restraints teach? Restraints teach terror to already

terrorized individuals. They teach helplessness, hopelessness, and

powerlessness, intense frustration, and rage. I have seen all of these feelings in

the eyes and the face of my own son while he is being restrained. The end result

of aversive and restraint techniques in the short-term may be surface

compliance, but, over time, all they beget is more violence. This results in more

and more restraint procedures as a vicious cycle evolves, which can ultimately

end in death.

I have valiantly attempted to stop this endless cycle for my son,

Nick, but I canít do it without your help. This fall, when it became obvious

that Nick would not willingly leave the home for any reason, a school program

began coming to our home to try to lure Nick out and onto the school bus. This

program said they would only use positive approaches. But when Nick did not

respond quickly enough, the staff wanted to go to aversive techniques. The

program suggested we remove everything that Nick enjoys from his bedroom and

then compel him out of the house. But when Nickís psychiatrist said he should

not be forced from the house, the school program canceled their contract.

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The next group of school personnel who came into my home said

they were using positive behavior approaches, as we had agreed, but then all

they would talk about was getting my son out of the house in a week, which

would require force. I had brought my son home from a residential facility to

remove him from harmís way. I was shocked to find he was not safe at home

from the ongoing threat of aversive and restraint techniques. Further, I felt that

if anyone was successful in forcing Nick from my home and into another

facility, he would fight for his life and end up in restraints just as Matt had.

My experiences clearly demonstrate that as long as aversives and

restraints remain an option, agencies in New Jersey wonít work long enough on

positive approaches to allow them to be successful. They quickly fall back on

what they know best -- aversives and restraints. Virtually every program in New

Jersey resorts to these control techniques because there is no law to force them

to use positive approaches. That is why there is almost no one in New Jersey

who can work with my son using positive approaches.

Opponents of Matthewís Law say parents need options for their

childrenís treatment. Parents desperately need options, but not from among the

various aversive techniques. They need the true option, which is positive

behavioral approaches. Parents only choose restraint, usually under coercion,

because they have no real choices. If there is to be extra training for funding,

please let it be for positive approaches. Believe me, staff and school personnel

know only too well how to use restraints. Letís train people how not to use

them.

Iíd like to make a comment to the parents who are here today who

believe their child needs restraints and aversives. Until very recently, I thought

these were necessary for Nick, too, so I share your concerns. However, I

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changed my mind after I found out about Mattís death. All I can ask is for you

to consider whether you would still choose the restraints and aversives if you

were presented with a truly positive approach that worked better.

The use of restraints and aversives is not simply a difference in

treatment philosophy, as their proponents would have you believe. It is a

human rights and civil rights issue. Techniques that are used on children, like

Nick and Matt, are not permitted to be used in any other living population --

not political prisoners, not even animals. The Humane Society states that "all

animal cruelty is a concern because it is wrong to inflict suffering on any living

creature."

Sadly and tragically, it is too late to help Matt. But I beg you to

pass Matthewís Law for Nick and for all the Matts and Nicks in the State of

New Jersey. Their very lives depend on it.

Thank you.

ASSEMBLYWOMAN WEINBERG: Thank you, Dr. Allen.

Are there any questions for Dr. Allen? (no response)

Cynthia, thank you again, and thank you for all your past input.

DR. ALLEN: Thank you.

ASSEMBLYMAN PAYNE: Thank you very much.

Mr. Vito Albanese, please, Senior, and Vito Jr.

V I T O A L B A N E S E SR.: Good afternoon.

ASSEMBLYMAN PAYNE: Mr. Albanese, is your red light on?

(referring to PA microphone)

MR. ALBANESE SR.: Yes, it is.

ASSEMBLYMAN PAYNE: Thank you.

MR. ALBANESE SR.: Can you hear me now?

81

ASSEMBLYMAN PAYNE: Yes. It sounds like a commercial to

me. (laughter)

MR. ALBANESE SR.: Right. Youíre a funny guy, Mr. Payne.

(laughter)

ASSEMBLYMAN PAYNE: Youíre okay, too, Vito.

MR. ALBANESE SR.: Good afternoon.

I wanted to thank Assemblywoman Loretta Weinberg and

Assemblyman William Payne for the opportunity to testify at this Joint

Committee hearing. Iíd like to introduce myself. My name is Vito Albanese Sr.,

and sitting beside me is my son, Billy. We call him Billy as a nickname, heís

Vito Jr.

V I T O A L B A N E S E JR.: Hi.

ASSEMBLYMAN PAYNE: Hi. My name is Billy, too.

ASSEMBLYWOMAN WEINBERG: Hi.

MR. ALBANESE SR.: Today is an important and serious day in

the lives of our disabled population. Today this legislative body can pass and

must pass Matthewís Law, Assembly Bill No. 2855. Nothing -- anything less

is a clear violation of our most vulnerable and voiceless citizens. The disabled

population demands due process, equal protection under the law, civil rights,

and human rights.

I want to take this opportunity to commend Assemblyman Eric

Munoz, M.D., and his excellent staff for their leadership and courage in

proposing and introducing Assembly Bill No. 2855; also, Assemblyman Guy

Gregg and his excellent staff for coprime sponsorship of this historic and

important piece of legislation; and all the cosponsors, as well, too numerous to

mention by name. I believe 14 all total, and four Democrats to say the least.

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Assembly Bill No. 2849 is a watered-down version of A-2855,

Matthewís Law. A-2849 is not what the doctor ordered. Itís generic and basic

and takes away bits and pieces of DDDís policy and regulations already in

place. Weíre here today to insist that DDD reinvent themselves and change the

culture and climate in doing the peopleís business in New Jersey.

It is imperative on this legislative body to make strong

recommendations to Governor McGreevey and the leadership of the New Jersey

State Senate to make strong changes at the Department of Human Services, the

Division of Developmental Disabilities, the Division of DYFS, and the

Department of Health and Senior Services. We all have an obligation to protect

the health and safety and welfare of our most voiceless and vulnerable disabled

population.

My outrage sometimes is apparent, but today Iím calm because I

know in my heart of hearts this body will do the right thing. I emphasize right

thing in passing Matthewís Law, A-2855, as written, as is, not a generic form of

this historic legislation. Matthewís Law is the only game in town. Anything less

would be unacceptable to this outraged parent.

Iíd like to touch on some bullet points in discussing some of my

testimony. Division Circular 35, which the Division of Developmental

Disabilities puts out as policy, is called Behavior Modification Plan. That must

be abolished. Canít plan for the restraints. And if they use the restraint on a

Behavior Modification Plan, itís never reported to any investigative body as

abuse or neglect.

Division Circular 19, which was changed because of my sonís case,

because in that Division Circular, never called for a physician to order the use

of the restraint. Division Circular 19, only the physician can authorize the use

83

of a restraint, not a direct care staff. If youíre going to hire direct care staff at

7.50 an hour to give them the power to restrain, youíre putting our children in

a dangerous way. The training is not there. Theyíre not trained properly. We

were told they got the greatest training, but, yet, recently the Division of

Developmental Disabilities filed a 50-page, serious deficiency report and

showed no training.

Letís talk about the Vineland Training Manual, which I showed to

some of the members of this Committee at a meeting recently. Those karate

holds and police techniques -- and this is whatís taught by DDD and to the

facilities for the use of restraints. That Vineland Training Manual is an

abomination and that should be abolished also. Theyíre very dangerous,

abusive, and deadly.

Iíd like to bring to your attention one of the regulations in the

Division of Developmental Disabilities. Itís called 1044-B. And in 1044-B,

restraints are prohibited in the use of community care residents. So how

discriminatory is it that the Division of Developmental Disabilities use 1044-A

for developmental disabilities -- to rescind it -- 1044-C for traumatic brain

injury, but condone the use of restraints in those two regulations, but in 1044-B

they are prohibited. Division Circular 14, in my opinion, is in conflict with any

NJSA law.

Direct care staff: too much power to order the restraints -- not at

McDonaldís wages, no formal education. Direct care staff: no medical

background in making an emergency judgment to use restraints. Positive

approaches, not negativity. Talk, talk, talk -- diffuse the situation with cooler

heads and use positive-talk approaches.

84

Everybody asks, what is an emergency? Well, Iím going to give you

my definitive answer to emergency.

ASSEMBLYMAN PAYNE: Before you do that, Mr. Albanese, the

emergency may be, is we go too much longer. If you could, kind of, take

another couple of minutes or whatever to kind of wind up, because there may

be some questions for you after this.

MR. ALBANESE SR.: I only have a couple of more minutes.

Okay.

The definitive, in my opinion, is if we can use the picture in a

hostage situation by police. The first thing they do, the police, is not going in

there bullets shooting, billy clubs swinging, shackles, and handcuffs. They bring

negotiators that are trained in psychology, and they talk down the situation.

Theyíre not using the restraint. Thatís my definitive answer to an emergency.

Look into what causes the emergency -- the environment, medical

problems, mental health problems, lack of sleep, lack of food, just plain in a

rotten mood. Us, as normal people, have bad days. Are there people out there

to restrain us for a bad day? If we say, "No," to something or someone, it

means no. If our disabled population says, "No," in a facility, their day consists

of restraints, and I think thatís outrageous. What part of no didnít this direct

care staff understand? If I did to my disabled son what the facility did to him

in the public, Iíd be arrested for child abuse and endangering the welfare of an

adult.

In concluding, let me just say this. Knowledge speaks, wisdom

listens, so listen to the people of the State of New Jersey and do the peopleís

business. Pass Matthewís Law, A-2855, as is.

ASSEMBLYMAN PAYNE: Thank you very much, Mr. Albanese.

85

Are there any questions for Mr. Albanese?

Loretta Weinberg.

ASSEMBLYWOMAN WEINBERG: Before anybody asks Mr.

Albanese any questions, let me assure you that he knows every regulation by

heart. (laughter) And again, heís usually right. So be careful if you wish to

challenge him in any way, because I found that out through some bad

experiences.

So, again, thank you for the education that you helped provide to

us.

ASSEMBLYMAN PAYNE: Yes, Assemblywoman Cruz-Perez.

ASSEMBLYWOMAN CRUZ-PEREZ: I thought I was going to

listen and not say anything, but I have to say something. Back in 1998, I

introduced legislation that is doing the same thing youíre asking to do for

Matthewís Law. I swear, I wasnít going to get emotional. But Iím very upset,

because Matthew, maybe, would be alive today if we passed this legislation

back in 1998, and we didnít do it.

MR. ALBANESE SR.: Thatís Donald Latrentaís (phonetic spelling)

bill.

ASSEMBLYWOMAN CRUZ-PEREZ: Yes.

MR. ALBANESE SR.: And it only goes so far, to school. It doesnít

go into the residential portion.

ASSEMBLYWOMAN CRUZ-PEREZ: I know. It was going to be

established all over, and I was willing-- I asked everybody to sit down with me

and work on this legislation. It got released twice from committee.

MR. ALBANESE SR.: I called your office on numerous occasions,

and I didnít get no response.

86

ASSEMBLYWOMAN CRUZ-PEREZ: It got released from

committee, Mr. Albanese. My point is, that at that point we ignored what weíre

discussing today. We should not ignore this anymore. Weíre on the same page.

I have a son in a special environment, and he was restrained about three months

ago and got home with bruises everywhere. So, believe me, this issue is very

sensitive to me. But Iím upset, because I proposed the legislation back in 1998

to eliminate restraint, unnecessary restraint, and it never happened. Now we

have Matthewís death to really push this issue. Letís do it.

MR. ALBANESE SR.: Well, Iíd like to get your commitment to

come on as cosponsor to A-2855, if I can get your commitment to that?

ASSEMBLYMAN PAYNE: Thank you. Thank you.

Mr. Albanese, could you please restrain yourself? (laughter)

MR. ALBANESE SR.: Yes, sir.

ASSEMBLYMAN PAYNE: All right. Thank you very much.

Assemblyman Green.

MR. ALBANESE SR.: I want to thank Assemblywoman

Vandervalk, that recently came on to Matthewís bill. I commend you.

ASSEMBLYMAN PAYNE: Mr. Albanese, if you would, we have

a question for you, if youíll just wait a minute, please.

MR. ALBANESE SR.: Oh, all right. Okay. I thought you were

almost done with me.

ASSEMBLYMAN PAYNE: Stop--

MR. ALBANESE SR.: Okay, stop-- Youíre a funny guy, Mr.

Payne. (laughter)

ASSEMBLYMAN GREEN: Iím afraid to ask you a question.

MR. ALBANESE SR.: Donít be afraid.

87

ASSEMBLYMAN GREEN: But Iím going to ask anyway.

MR. ALBANESE SR.: Okay, sir.

ASSEMBLYMAN GREEN: Iím going to ask you very slowly, and

I just want you to give me why you feel that the substitution is such a

watered-down bill that it doesnít do anything. And like I was always taught,

that you have to start some place. And listening, not all day long, to all the

testimony, but Iíve listened to enough to know that all of us are concerned

about the Matthews of the world and people like your son. Iíd like to feel that

this is the start, whether, if weíd had done this five years ago, maybe Matthew

would be alive today. But Iím hoping that no matter what we come out of this

Committee meeting with, that all of us can be on a positive note.

I know Iím going to be supporting whatever I can do, but if it takes

this particular substitution in order to put us in the position where we can move

ahead and some day we can, somewhat, bring a closure to anyone being abused,

especially an individual who really needs medical help-- So Iíd like to feel that

-- hoping that you can look at it in a positive way, rather than just feeling,

because you canít get the whole loaf, the part of the loaf that weíre trying to

move in that direction is not enough. Again, itís a question -- but by the same

token, itís the way I feel personally, and Iím hoping that you can understand

that without being negative, in terms of saying itís just watered down and it

doesnít do enough.

MR. ALBANESE SR.: Well, can I respond to that, please?

ASSEMBLYMAN PAYNE: Sure. Please do.

MR. ALBANESE SR.: In the bill, it says that a physician would be

called 24 hours -- to restrain. In any practice, right now, at DDD, in their

Circular 19, it says, "A physician must be called immediately." You donít put

88

the cart before the horse. Once the restraint is there and thereís an injury, then

you call the doctor.

My son has serious orthopedic problems. He was put in basket

holds. If a doctor came and examined him before they put him in these basket

holds, your doctor would have said, "Itís contraindicated, do not restrain this

boy." Do you want to tell this boy that it was proper to put him in these holds?

They donít even have policy and procedure if someone is sitting in a wheelchair

at DDD, let alone the facilities. Thereís no policy and procedure, yet they had

him on the floor in four-man takedown. Heís no danger to himself or others.

Thereís a provider here in this room. Iím waiting for him to come

and testify. Iíve got his book in my valise. You talked about ammonia sprays.

Well, that gentleman uses that kind of stuff and is condoned by DDD. I got a

book with 21 of his procedures, and Iím waiting for him to come and testify.

(laughter) He knows who I am, and I know who he is.

ASSEMBLYMAN PAYNE: Thank you. Thank you.

Billy, at the last meeting we had, you asked me about your PT, I

think. You said, "What about my PT?" Right?

MR. ALBANESE JR.: Yes, right.

ASSEMBLYMAN PAYNE: I havenít heard from you today. Your

father is doing all the talking here. I mean, you have something to say once in

a while, too. You asked me about that the last time.

Speak into the mike, Billy.

What were you looking for?

MR. ALBANESE SR.: Did you tell Mr. Payne you wanted your

physical therapy?

89

MR. ALBANESE JR.: Yes, I did want PT. Yes.

ASSEMBLYMAN PAYNE: Thatís right. Thatís right.

Well, weíll see. I hope your father is following up on that to see to

it that you get your PT.

Thank you. Thank you very much.

MR. ALBANESE JR.: Okay.

ASSEMBLYMAN PAYNE: Any other questions? (no response)

Thank you.

MR. ALBANESE JR.: All right.

MR. ALBANESE SR.: Thank you.

MR. ALBANESE JR.: Thank you.

ASSEMBLYMAN PAYNE: Thank you, Mr. Albanese.

I have to commend you, because you have been a very, very diligent

advocate here. And as I said when I first met you a couple of years ago, just

keep calling, keep calling, keep calling and donít give up, donít give up. You

havenít, and I want you to continue doing that.

MR. ALBANESE SR.: Mr. Payne, we canít compromise another

disabled kidís life. We canít compromise that.

ASSEMBLYMAN PAYNE: Thatís right.

Thank you very much.

Dr. Henning. Please identify yourself, Doctor, and your affiliation.

D A N A H E N N I N G, Ph.D.: My name is Dr. Dana Henning. I

currently work as a private advocate and clinician with people who have

developmental disabilities. I have for approximately the past 30 years. My

masterís degree is in special education with a behavioral emphasis from Temple

University. My doctorate is also from Temple University, working with people

90

with severe disabilities. I had taught special education at Temple University.

I had an appointment with Columbia University as Assistant Professor in the

Department of Physicians and Surgeons.

Iím currently working with Nicholas Aquilino, which is Cynthia

Allenís son. At an earlier time, I had spent a full day with Matthew Goodman,

getting to know him and his needs when he was at Bancroft. I had been hired

as a consultant, at one point in time, by DDD to work in one of their

developmental centers in the Psychology Department to look at putting more

positive approaches and decreasing the use of restraints in their facility. I also

worked at Morristown Memorial Hospital at their Developmental Disability

Center in New Jersey. I was charged with working with people who had medical

needs, mental retardation, and behavioral needs. I was paired with a

psychiatrist to deal with them.

I am based in Pennsylvania, although I work in the Netherlands

and Germany, as well, on these types of issues. I was involved in the state of

Pennsylvania when we started eliminating the use of restrictive procedures and

restraints and had a statewide Positive Approaches Subcommittee.

One of the things that I would like to share with people is that there

is not a need for these types of restraints in terms of restrictive procedures.

There are alternatives available at this point in time. There needs to be training

and education so that people are familiar with using them. Too often, thereís

a confusion, in that people talk about positive approaches, and they feel that

itís the same techniques as others are using, but minus the restraints. Thatís

inaccurate. A better term would be using the words proactive approaches, where

there is a fuller spectrum of strategies that are used in terms of looking at

sensory integration problems, where people with these types of developmental

91

disabilities are overreacting or underreacting to the environment, which can

result in their behaviors.

Thereís a need for looking at communication in basic relationships

so these people can reconnect with others, so that thereís a value to being with

others and less need for expressing their needs through behaviors. There are a

slew of strategies, techniques, protocols that can be used with people who have

these types of needs, without needing to resort to the aversive types of

procedures.

People are telling war stories. I worked at Woodhaven Center,

which at one point in time was considered one of the model programs in the

United States. It was operated at the time by Temple University in conjunction

with the state of Pennsylvania and served only those people who had the most

severe behavior challenges, in addition to developmental disabilities. Those

people received very restricted procedures when they were at the facility. Many

of those people I now work with in the community. They continued to have

their aggressive and self-injurious behavior when they were receiving restraints,

when they had access to this full range of aversive treatments, and yet they were

discharged into the community where we served them without those types of

things.

We found that we could take people who had-- One women, in

particular, used to smash her fist through glass windows. We used hot

whirlpools for her, to get sensory stimulation in other ways.

What I would like to suggest to people is that, if youíre talking

about using these restraints and assuming that youíre giving people informed

consent, informed consent requires that people have alternatives presented to

them and that theyíre given some choices in saying, "This is a strategy that could

92

be used for your child, and this is the likely outcome," as opposed to, "If you

donít use our strategy, you need to leave."

Iíd like to suggest that the absence of restraint is not the absence of

treatment. I would like to suggest that teaching restraint or using restraint

teaches people that being in control is what they should be striving for. And

people with disabilities do not have that type of an opportunity. What I would,

also, like to suggest is, we would not be using these types of procedures with

people who donít have these disabilities. These procedures are not limited to

Bancroft. If you go into your developmental centers today on your way home,

you will see these procedures being used.

Thank you.

ASSEMBLYMAN PAYNE: Thank you very much, Doctor.

Yes. Assemblyman Cryan.

ASSEMBLYMAN CRYAN: Thank you.

And thank you, Doctor.

Doctor, you testified that thereís not a need for restraints. Can you

just reconcile that? Were you here earlier when we heard the story of Lisa and

David -- how Lisa bit her flesh and David had aggression issues? And yet,

through the use of restraints, as well as other positive reinforcement tools,

theyíre now productive and in society. In fact, restraint was a tool, as part of

an overall program used and now is used minimal, if at all, in their cases. Can

you help me with that, when you talked about a slew of strategies that donít

include that? Yet weíve heard some positives. They seem to conflict.

DR. HENNING: When youíre talking about those two particular

individuals, we donít know, as weíre hearing these stories, whether or not they

could have, also, gone without using restraints and restrictive procedures and,

93

also, ameliorated their behaviors and been without restraint at this point in

time.

ASSEMBLYMAN CRYAN: But accepting things as they are, and

a professional much like yourself, who spoke to us and clearly gave us what I

think were a couple positive stories in that regards, would we-- One of the

things Iím having trouble with here on this bill is saying, okay, restraints are

bad. Weíve heard the stories and the emotional restraints thatís with that, yet

Iím also trying to reconcile that with the positive stories Iíve heard as well. Are

you of the belief that thereís no situation and no part of treatment that requires

the use of restraint in any way, shape, or form?

DR. HENNING: Iíll tell you, being from the Midwest, I guess Iím

not as exuberant as some people -- as we always say, from out east, are. And so

I always kept thinking, I have to be more respectful because thereís going to be

somebody who needs this. I canít say, "No, no one ever needs restraint,"

because Iím going to run into somebody. They must know something I donít

know. But, in 30 years of working with these people, I havenít found that

person yet.

ASSEMBLYMAN CRYAN: Okay. I appreciate that.

Thank you.

ASSEMBLYMAN PAYNE: Yes.

Assemblyman Green.

ASSEMBLYMAN GREEN: Yes. During the course of your

testimony, you mentioned that you have worked with the two families --

Matthewís family and the other young manís family. When you said you

worked with them, did you work with them on behalf of the facility or did you

work on behalf of the parents?

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DR. HENNING: When I was working with Matthew Goodman,

I was actually hired by his school district--

ASSEMBLYMAN GREEN: Right.

DR. HENNING: --because there was going to be plans for creating

a program for him, within the state of Pennsylvania, that did not use restrictive

procedures. And I was identified as the person to go out to create exactly what

that program would look like, and what procedures would be used for him in

that type of facility, and what type of resources would be needed.

When it came to the case of Nicholas, who is Dr. Allenís son, I was

asked by Dr. Allen, initially, to come out to do the preliminary evaluation for

her son, which is how I met him. I was later contacted by her school district,

who asked me to follow up and put together a program. At this point in time,

Iím writing the initial report, which will set forth what types of supports he

needs in order to be educated and supported in his home, with the idea of

expanding his horizons so that he, again, wants to leave his room and wants to

leave his house and return to society without force.

ASSEMBLYMAN GREEN: As a person, and I listened very

carefully to your education, and I must say, itís great. For a person who has

really been close to this particular situation, in general, what went wrong?

When I say, from a medical point of view, you had the opportunity to deal with

the family from a personal point of view. Itís obvious there had to be someone

that you reported back to say, "Hey, weíre dealing with this the wrong way."

It had to be someone who just, basically, had a deaf ear with your

recommendations, because itís obvious, listening to your testimony, you had to

see something was wrong there. What went wrong, if you donít mind, if you

could just share that with me?

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DR. HENNING: Itís 3:15 already, and I imagine you want to

leave by five-ish.

ASSEMBLYMAN GREEN: If you could do it-- Well, no, Iím not

looking to stay here all day long, but Iíd like to feel that you could sum it up,

real quick, in terms of what would be your recommendation? I listened to

Assemblyman Cryan in terms of, it might be a case out there where we might

have to use some restraint. But the idea, listening to you, you feel like we donít

really have to do that. Somewhere along the line, somebody didnít listen to

someone, and I donít want to point fingers, but itís obvious. No one could

have been closer to that issue than you, because of the fact that you dealt with

them one-on-one at the same time you represented the district, and that was

your job, I presume, to recommend what type of treatment and what was going

on. Iím just curious, again, without getting into a lot of details, something had

to go wrong.

DR. HENNING: I can give you the overview version.

ASSEMBLYMAN GREEN: Well, if you want to do that, I would

appreciate that.

DR. HENNING: Okay. In the overview version, the first problem

that went wrong was when we looked at the entirety of the program that was

being offered to Matthew in the facility that he was in. After the point it was

determined that he was injuring himself, because -- after his hospitalization.

The program started to decrease all types of stimulation that a normal child of

his age would need in terms of going outside, having friends, being able to do

things, going to school. So there was a dearth of support for him. There was

the lack of working on basic communication with this child who did have some

speech. He was, even when I saw him, which was before he was so overly

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medicated, he was a child who-- He reached his hand out to you. Even when

his hand was in that restraint, he would try to get that arm up so that he could

put his hand out so you would touch his hand. He was a child who really

wanted people to him. And yet, by being in the-- He was in an earlier type of

a helmet and these arm restraints, it kept people away from him, which really

did eat at his soul.

He didnít have an opportunity for basic things. For example, the

day I saw him, which was a full day, the group of people who lived in his unit

were going out for fast food to get a Chicken-McNugget-type of thing, which

was his all-time favorite food. At first he was told he was going to get Chicken

McNuggets for lunch, and then there had been an error so that his order wasnít

placed. So when the other children came back and they had their Chicken

McNuggets, he got to watch these kids, but didnít have any. And yet, he

expected -- this was the highlight of his day. He hadnít done anything all day.

He was to watch that and not get upset.

Then he was told heíd get, like, a burrito or some type of a frozen

food, and it went from this favorite food to that favorite food to that favorite

food until it ended up with Spaghetti-Oís, which was a very low thing on his list.

And yet, weíre looking for a child to not react to that. So just basic

care-of-children things werenít there, of encouraging him to speak, encouraging

him to communicate, wasnít there.

The day that I observed him, there was no semblance of what was

offered in the written plan actually being implemented. There was no semblance

of the releases that were to occur from those restraints being implemented.

When we tried to create the actual program for him, to remove him, it was a

nightmare of funding streams, of whoís responsible for funding a program for

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this child. My job was just to write out what the program would look like. And

people would agree, "Boy, that looks just like itís going to serve all of the needs

we have," but then they couldnít determine, well, what portion does the school

pay for and what portion does mental health pay for, and so the arguments

came between the systems.

Meantime, the recommendations that were going, for alternatives

and suggestions, to the facility he was currently living in, none of the alternatives

were being tried. The program just remained the same. When we look at

Nicholas, weíre looking at many of the same issues -- in that, in your state,

thereís very few people at this point in time who are trained, that we can go in

there-- I can write a program that says this is the way it should look for

Nicholas. But I live too far away to be the person who implements it on a daily

basis.

We really need to get a core of people, here, trained -- not so much

even the direct-care staff level. Itís that mid-level person, so you can have

people who can create these types of positive alternatives for people who know

the proactive things -- who know how to use the technology, the

communicators, such as some of the people who attended here know how to use

in lieu of having speech -- to get staff so they can understand how to do the

same functional analysis to whatís behind the behavior. So there really needs

to be a core of education in this state. There needs to be more alternatives to

people, and there needs to be better safeguards to the systems that you currently

do have in place.

ASSEMBLYMAN PAYNE: Thank you very much.

Assemblyman Thompson.

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ASSEMBLYMAN THOMPSON: Certainly, I think weíd all agree

that these facilities have treatment programs that attempt to help the child get

better, and so on, etc. Take the case of Lisa, for example, who was biting hunks

of her flesh out. Now, unless youíre going to have somebody sitting there 24

hours a day watching this individual and, if she reaches to bite, youíre there --

youíre restraining, i.e., you reach out to keep her from biting. Weíve heard

much about utilizing alternative approaches, and I take that to be the treatment.

How, without the use of restraint, would you prevent an individual like Lisa

from, when sheís left alone for two minutes, biting her hunks of flesh out or

something?

DR. HENNING: Well, first up, most places that have regulations

that allow the use of restraints require that when restraints are used staff remain

in the immediate proximity. So, in even worse situations, which also exist,

unfortunately, in this state -- and Iíve witnessed them -- where the people are in

these restraints and then theyíre left alone, most of the time when theyíre in

restraints there is somebody who is here.

ASSEMBLYMAN THOMPSON: But I get the impression that

their restraint shouldnít be used, so, therefore, you wouldnít necessarily have

that person there with them, since restraints arenít being used.

DR. HENNING: No. No. No. I would not say that you

wouldnít--

ASSEMBLYMAN THOMPSON: So, Iím saying, how do you

avoid the person injuring themself or something else?

DR. HENNING: I would not say you donít need somebody to be

with them. Initially, itís really a different deployment of manpower, in that you

would, initially, get a really solid understanding of why the person is doing that

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and work very intensely, perhaps two staff to that person, to figure out why

theyíre doing it. Very often, itís for very silly reasons. Weíre looking at this as

though itís always something so intense and complex and above what we

understand. Sometimes people bite themselves because their skin itches, and

they donít have the coordination to get their hand there and they can get their

mouth there, and it relieves the itch. Some of the things are not as complex. So

sometimes what we do for things like that is hand lotion. Itís not a very

high-tech thing.

Youíre looking at teaching her a way-- Perhaps, sheís biting because

she doesnít want to have to go into the workshop, and she knows that if she

goes and starts to bite, they will restrain her and she doesnít have to work.

Well, another alternative to that would be not making her go into the workshop.

So what youíre looking at are alternative strategies.

ASSEMBLYMAN PAYNE: Assemblyman Thompson, specifically,

you asked how would you prevent a person from biting themselves, if they were

doing that, without the use of restraints. I think youíre talking about the

long-term -- finding out the reasons why she does that and, therefore, reverse

them.

ASSEMBLYMAN THOMPSON: Thatís what Iím saying. We all

believe thereís some treatment there--

ASSEMBLYMAN PAYNE: Sure. Sure.

ASSEMBLYMAN THOMPSON: --but until the treatment works--

ASSEMBLYMAN PAYNE: How do you prevent them?

ASSEMBLYMAN THOMPSON: --how do you prevent them from

harming themself or--

ASSEMBLYMAN PAYNE: Without restraint.

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ASSEMBLYMAN THOMPSON: --harming someone else without

ever utilizing restraints?

DR. HENNING: You may have, on a very rare occasion, a need

of a use of a restraint in an emergency circumstance. Something that youíre not

predicting. I think other people have addressed it, as opposed to this young

lady who sounds like we knew she was going to bite her hand. So we should

have had an understanding -- or bite her shoulder, or whatever -- we should have

had an understanding of why she was doing it.

ASSEMBLYMAN THOMPSON: So youíre saying, so time can

cure it?

DR. HENNING: But weíre talking -- to find it might take a day

or two. Weíre not talking it might take you six years or so.

ASSEMBLYMAN THOMPSON: Well, you mean these problems

are that simple, that in a day or two you can analyze them and come up with

a solution? I thought it was much more length to them than that.

DR. HENNING: Not for every one of them, but for a lot of them,

yes. A lot of them are as basic as, "I donít want to go to that program, and then

youíre going to make me go to that program, and the whole time Iím in there

Iím going to do X, Y, or Z to self-stimulate myself to get in restraints so I donít

have to do the task that youíre asking me." Are all of them that simple? No.

But there are a lot of them that you can be eliminating just by listening. If the

person doesnít want to go on the bus, thereís a good reason why the person

doesnít want to go on the bus, and we need to start respecting that.

It also can be things of sensory integration, where the person cannot

understand the sensory input thatís being given to them. And thereís a slew of

strategies to deal with that, that donít relate to restraint in any size, shape, or

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form. Teaching a person to say, "No." One of the first things that someone did

with Nicholas, when he was attacking people when he was in his home, was to

teach him to push his hand away to indicate go away. And that dramatically,

within several days, suddenly dropped the incidence of his behavior. Because

if you got too close to him, he could just let you know he wanted you to leave.

So where some of this is very intense and very clinical, the majority

of it is not. Some of it is medical. Some of these self-injuries -- some people say

as high as 80 percent of them are because the person has a medical condition

thatís not been identified, and, very often, thatís not being explored. So there

really are alternatives to it. Itís not something like, if youíre really working with

difficult people, this is the only alternative you have. There are places, many

places, that no longer use these things, even though they work with the same

exact people who used to live and work in the facilities where these types of

procedures that were used -- the same people.

ASSEMBLYWOMAN WEINBERG: Thank you.

Thank you, Doctor.

Let me just concentrate on something. Perhaps it will help clarify.

Some members of the audience might not have closely examined the Committee

Substitute. But the Committee Substitute, in most cases, incorporates a good

portion of those things that we all agreed on, and then again, a good portion of

the original A-2855, Matthewís Law. The main difference between the

Committee Substitute and A-2855, Assemblyman Munozís bill, is whether or

not mechanical restraints can be used as part of the IHP. Under the original

bill, under Dr. Munozís bill, mechanical restraints cannot be used in the IHP.

They can only be used in the case of emergencies.

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Anybody wants to correct me on the way I understand this, Iíd be

happy to hear it? (no response)

In the Committee Substitute, they can be part of the IHP, but there

are a lot of safeguards -- my word -- built into it. They can only be used for the

period necessary, so the person no longer poses a threat, those emergencies

issues. They canít be used for longer than one hour, and attending or

individualís treating physician must examine the individual no later than one

working day. They can only be approved after there is an interdisciplinary team

consisting of the parent/guardian, the county based human rights advisory board

-- remember, whose members cannot be affiliated with the institution thatís

being reviewed. So that those things have to be carried out before those

restraints can be used in the IHP.

One of the problems Iím having with all this, and maybe some of

our future speakers will be able to address this, is, Iíve been visited by groups of

parents who really believe that restraints, in very limited ways, should be part

of their child or loved oneís IHP. They do not believe they should be used --

and my word punishment -- I realize that we have many more technical terms for

that, but not for punishment, or I forget how the doctor put it, "Time out from

positive reinforcement," but that it is included in the IHP. Some groups of

parents, who represent a large number of young people, honestly and

passionately believe that that idea should be included in their childís IHP.

I would like any future speakers, because thatís really the crux of

the difference between the Committee Substitute and Dr. Munozís bill-- Most

of the other things weíve incorporated, and I think have incorporated well. We

also have some definition changes. Everybody received a very long letter from

DDD, which mostly involves definitions and such. But I think that kind of

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narrows it down to the differences between the Committee Substitute and the

original Matthewís Law.

So, with that, the next speaker is Dr. Fredda Brown, Professor from

Queens College, City University.

Dr. Brown.

F R E D D A B R O W N, Ph.D.: Hello. Thank you for the opportunity to

speak before you and express support of Matthewís Law.

ASSEMBLYWOMAN WEINBERG: Would you identify yourself,

first, for the record?

DR. BROWN: I am Dr. Fredda Brown, and I am a Professor of

Special Education, specializing in individuals with severe disabilities. In more

than 25 years in the field, in addition to my work as a professor, Iíve also been

the Clinical Director of an agency that offered community-based residential

programs for individuals with the most severe behavior problems, such as the

level of those described by Dr. Favell.

Iíve also provided training and consultation across the country on

the use of effective, positive strategies to support individuals who exhibit

challenging behaviors. I have published numerous articles in refereed journals

and have written many book chapters, as well as published three books in this

area. Currently, I am the Editor-in-Chief of the refereed journal Research and

Practice for Persons with Severe Disabilities, and I am also an associate editor for

the refereed Journal of Positive Behavior Supports.

I would like to use my brief time here to clarify the issue of

restraint, to describe the current state of behavioral technology, and point out

some red flags to consider as you look at this bill.

104

We must distinguish between restraints used as an emergency --

which may be necessary, I feel, at some point in time, to prevent harm to the

individual or to others -- versus restraint used as treatment or programmatic

restraint. Emergency restraint is used for immediate protection for real

emergencies. The goal is to protect the person or others, not to reduce problem

behaviors. Programmatic restraint and aversives are implemented as

punishment, that is, as a consequence for some targeted, inappropriate behavior,

implemented with the goal of reducing that behavior.

I would like to clarify two important criteria for restraint that I

think should be considered. Restraint is a staff action that should be used only

in response to when an individual, or others in the immediate environment, is

in immediate danger -- and not a predicted danger -- an immediate danger. I am

familiar with cases where restraint is used for behavior that has, sometime in the

past, been associated with or a predictor of more dangerous behaviors. As a

behaviorist, I must inform you that if a behavior can be so easily predicted, then

the behavior can be easily addressed using alternative strategies.

Restraint must also be used for the time that the person or others

are in that danger. Restraint must be terminated as soon as possible, as soon as

the danger is over. Most of us have seen what is called emergency restraint,

except itís for hours, for days, and for months. This is no emergency, and there

is no justification for this. This is an attempt to use restraint as a treatment, and

the use of restraint as a treatment is simply a reflection of inadequate staff

training.

My first experience with individuals who exhibited the types of

behavior that results in restraints was in 1973. And I have to say, at that time,

I personally used restraint, as well as a variety of other aversive strategies, and

105

we called it therapy. The difference, however, is that at that time we did not

have the technology that offered us alternatives. Today we do have a

technology. We have positive behavior supports, as has been described to you

today. So today we have no excuse.

As a professional in the field, as an editor of a research journal, I

can assure you of two things: We have the technology to effectively address

problem behaviors without ever having to use restraint as a treatment, or other

aversive strategies; and we also have the technology to reduce the need for

emergency restraint. We can reduce that as well, even though I did say that I

think that is sometimes necessary. Much of the need for emergency restraint is

tied to incompetent environments -- that is, ineffective staffs, ineffective

instructional strategies, and outdated behavioral strategies. The journal that I

am the editor of has published research on effective and powerful technologies

of supports since 1975. Thatís 28 years of research and practice in this area.

The Journal of Positive Behavior Interventions, which is a newer journal, has been

reporting this technology for the past four years.

There are hundreds of books, training materials, written about the

use of this type of alternative strategies. We know how to do this, and we know

how to do this without the use of coercive and punitive procedures.

There have been millions of dollars of Federal--

ASSEMBLYWOMAN WEINBERG: Doctor, excuse me, you have

one minute left.

DR. BROWN: There are millions of dollars of Federal grants

focused on the continued research and development in the area. This funding

would not occur unless the funding agencies were certain of the strength and

importance of the technology, unless we had a strong research to support this.

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A couple of red flags: Iíd like you to be cautious of

recommendations that promote the use of programmatic restraint or other

aversive strategies as a last resort, as was discussed here today. Including these

strategies as an option along a continuum, ultimately, condones their use.

Provision of such a continuum is an obstacle to systems change and the

opportunity to truly embrace positive options. This continuum promotes the

ineffective use of positive procedures. The positive procedures become

procedural details that must be overcome to get to the end of the continuum.

ASSEMBLYWOMAN WEINBERG: Thank you very much,

Doctor.

Are there any questions? (no response)

Thank you.

Iím going to call Sally Jankowsky from the Family Alliance to Stop

Abuse and Neglect, I guess.

And then, Art Ball from COSAC.

Sally?

S A L L Y J A N K O W S K Y: Good afternoon.

Thank you for allowing me to speak. I am Sally Jankowsky, and

I am the parent of a 38-year-old son who has a traumatic brain injury. I am his

mother, his advocate, and his legal guardian. He was injured 19 years ago, and

since then, I have been very active on committees and boards and, also, am a

member of the Governorís Advisory Council for Traumatic Brain Injury. I am

here to give testimony about Matthewís Law and the limited use of restraints.

I commend Dr. Munoz for his leadership, for introducing and

proposing Matthewís Law, Assembly Bill No. 2855. This bill limits the use of

restraints. Restraints, according to this bill, are to be used in emergency

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situations with a medical order from the personís treating physician. Restraints

are not treatment. They are a failure of treatment. Parents are told that, if they

do not sign a paper for the use of restraints on their child, they must remove

their child from the program. Parents are threatened. They truly have no say

as to the treatment of their child. Their guardianship is useless. We are told --

and I have been told this, too -- "If you donít like it here, then leave."

If you could just think for a minute and put yourself -- imagine how

these kids feel when someone comes at them with a restraint. Theyíre

frightened. Some of them canít speak for themselves. They canít speak at all,

verbally, cognitively. Then somebody tries to restrain them, and, no matter

what type of restraint, these children canít verbalize how they feel. Theyíre kids.

Some of them are adults, too, and they fear. They have fear. It just escalates

that fear.

Why arenít they ever allowed to be people? Theyíre people first.

If they say, "No," to anything, then theyíre labeled behavior, but theyíre not

allowed to be people. Everybody is allowed to say what they want to do, but

because theyíre disabled, theyíre not allowed.

We need administrators that care, not just people with degrees and

letters after their name. We need staff that is trained in positive approaches.

We have staff doing these restraints. Why canít they be taught and trained to

do positive things? We need accountability and responsibility from the

facilitators, staff, and administrators. Itís a must. Theyíre not -- these points

arenít considered.

I have been told several times that whenever there was an incident --

occurred with my son -- that it was his fault, when, in fact, after investigating

the incident, it was the staffís fault. I had the similar incident in my sonís --

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when my son was in New Jersey. There was neglect on the staffís part. She

didnít do what she was supposed to do. My son is in a wheelchair, and he

requires a one-on-one.

The substitute bill enforces the standards that are in effect today.

Theyíre negatively effective. Iím sorry. The doctor has to be the one to

implement any use of restraints, not the interdisciplinary team or the human

rights people. That is what is being done now. We have that now. It doesnít

work. The teams do not exist in accordance with DDD standards. Itís not

working. Who is going to get picked from the county? What are they going to

know about a specific disability? The doctor needs to be the person. Get the

doctor on staff. How many more deaths are needed so that rules are enforced

correctly?

This is a bill, a substitute bill, that aids the providers. It helps the

providers to do what theyíre doing now. We need Matthewís Law, authored by

Assemblyman Eric Munoz.

Thank you.

ASSEMBLYWOMAN WEINBERG: Thank you, Ms. Jankowsky.

Are there any questions? (no response)

Thank you very much.

Art Ball, from COSAC.

A R T B A L L: Good afternoon, Madam Chairwoman and members of the

Committee. In the interest of time, I have written remarks, which Iíve handed

in, but I simply would like to say that on behalf of the New Jersey Center for

Outreach and Services for the Autism Community, we would like to offer our

support for the Assembly Committee Substitute, which we have had a chance

to look over. We believe that it allows for the restrictive use of restraints, but

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we also feel that it increases the accountability and, hopefully, encourages their

appropriate use.

So, again, if you would look over the testimony when you have the

opportunity, but we would simply like to offer our support for the Committee

Substitute.

ASSEMBLYWOMAN WEINBERG: Thank you for being brief,

and we do have written testimony. Donít leave yet.

Does anybody have any questions?

Yes, Charlotte.

ASSEMBLYWOMAN VANDERVALK: I tried to think about this,

and I couldnít come up with an answer. Why are we making a distinction

between different types of injured individuals? I mean, whether youíre brain

injured or autistic or just a plain person who happens to have any type of injury

or sickness or-- I mean, why are we making a distinction?

MR. BALL: Well, actually, I think some of the Ph.D.s or the

medical doctors who are in the audience may be able to answer that better.

From my understanding, depending on the type of disability that a person has,

the type of treatment or the type of -- the treatment options that we would want

to have available, theyíre going to be very different from person to person.

Persons with a particular kind of disability may respond much better to one

particular type of treatment more than one other. And I believe that thatís the

reason why theyíre in the bill that way.

ASSEMBLYWOMAN VANDERVALK: Well, I donít want to

belabor the argument. Itís just I am having a problem, internally, saying that--

I mean, if treatments are available or could be made available, it seems we have

to go that route and not categorize by type of illness in the individual.

110

MR. BALL: It seems to me that the only distinction I see in the bill

is, thereís a distinction between those who have traumatic brain injury and other

people with disabilities.

ASSEMBLYWOMAN VANDERVALK: Essentially, weíre talking

about -- arenít we talking about people that have neurological problems, some

type of a brain problem?

MR. BALL: Yes.

ASSEMBLYWOMAN VANDERVALK: So what difference does

it make if weíre-- I mean, why are we trying to draw distinctions? Why donít

we just treat them like people?

MR. BALL: Once again, all I can say is, because different types of

treatment may be more appropriate for some particular person because of the

type of disability.

ASSEMBLYWOMAN VANDERVALK: I donít mean to argue

against you, personally. Iím just thinking out loud.

ASSEMBLYWOMAN WEINBERG: Yes. If I may--

ASSEMBLYWOMAN VANDERVALK: Iím sorry.

Okay. Go ahead.

ASSEMBLYWOMAN WEINBERG: Assemblywoman, I donít

think this is the best witness to answer that--

ASSEMBLYWOMAN VANDERVALK: Right. Iím sorry.

ASSEMBLYWOMAN WEINBERG: --but we have some other

professionals coming up, because he represents one aspect of the community.

But I would like to ask the question that I posed a little earlier, as

to how we satisfy the differences in the parent community, and those parents

that believe that this should be part of the IHP -- with those safeguards that we

111

thought we built into the Committee Substitute -- versus the original Matthewís

Law that -- where there is no way to use restraints except under those emergency

conditions. If you could speak to that a little bit, it might help clarify it for me

and any other member of this Committee.

MR. BALL: My response to that is that I believe that the

Committee Substitute bill does that. It sets some accountability, it sets some

parameters, and it sets some safeguards, according to which restraints can be

used. It talks about a county-based review board. It talks about human rights

committees. It talks about things like that. It is my understanding, and my

read of the bill is that, the parents of children upon whom these restraints or

these treatments might be being used, that they are being included on those

bodies. So they do have the opportunity to address that.

ASSEMBLYWOMAN WEINBERG: I know that you are a

proponent, or at least thatís whatís been expressed to me, of being able to use

restraints in the IHP. So if you could speak on behalf of the parents that you

represent as to why you really feel it is important that it be in the IHP, as

opposed to just being able to use it, and only being able to use it, in cases of

emergency. What is the difference to the parents that you represent, if you can

do that?

MR. BALL: When I hear the parents talking, they talk about-- And

thereís some of them who talk about the fact that the ability to make use of

aversive procedures or to be able to use restraints in a planned way may have

been the difference between whether their child is uncontrollable and needs to

be institutionalized or, actually, is able to live at home.

What weíve been hearing all afternoon is, and, especially, I think

Dr. Favell had some interesting things to say-- It talked to using restraints when

112

necessary, but always lessening the use of restraints. Thereís a way to control

the behavior.

I remember hearing the story of a young man, in speaking of

aversive techniques. We can think of them as very noxious types of things, but

there was a young man, and they put a rubber band on his wrist. When he was

about to engage in a particular kind of behavior, or began that behavior, they

would snap the rubber band. Now, quite honestly, I donít think that doesnít--

Is that something weíd like to have done? No. But it isnít something thatís

terribly, terribly onerous on that young man -- it doesnít seem to me. But that

made a significant difference in his behavior. He said, "You mean when I do

that, thatís going to happen?" "Yes, it is." Almost immediately his behavior

changed.

What weíre talking about is parents who want -- who still would

like the professionals with whom they work to be able to use those kinds of

techniques.

ASSEMBLYWOMAN WEINBERG: Okay. Well, then, let me turn

that around, based upon the testimony Iím hearing. Suppose they said that

young man loved chicken nuggets, and they said to him, "Weíre going to give

you chicken nuggets for lunch every day, but every time you do that behavior,

youíre going to lose part of those chicken nuggets." Thatís the other side of the

coin. Do you have a reaction to that?

ASSEMBLYMAN CONAWAY: I have a reaction to that.

ASSEMBLYWOMAN WEINBERG: Well, donít tell me about

cholesterol, because I could think of something else. (laughter)

MR. BALL: The chicken nugget is considered a positive

reinforcement for picking the kind of behavior. Removing the chicken nugget

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can be considered an aversive. But quite honestly, what is it? Is that really an

aversive technique, or is it one part of something thatís designed to make that

young man or that person move in a positive direction? It would seem to me

that withholding something that that person wants, such as a chicken nugget or

an M&M or whatever that small reward might be, might be a very positive part

of something thatís designed to make a positive difference in that personís life.

ASSEMBLYWOMAN WEINBERG: Iím merely trying to illicit

this, that everyone understands the actual issue that we are involved in. In spite

of all the other papers in front of us, that is the crux of the difference between

the Committee Substitute and Dr. Munozís bill.

Thank you very much.

MR. BALL: Thatís exactly what it would seem to me, yes.

ASSEMBLYMAN CONAWAY: I was going to ask him a question.

ASSEMBLYWOMAN WEINBERG: Iím sorry. Go ahead.

ASSEMBLYMAN CONAWAY: I think the Chairís example

highlights the care that one must take in the kinds of positive or negative

reinforcements somebody uses. Because clearly, if you overuse the Chicken

McNuggets, youíll end up, perhaps, with an overweight child.

ASSEMBLYWOMAN WEINBERG: I knew he was going to say

that. (laughter)

ASSEMBLYMAN CONAWAY: So, the point being, of course, is

that there are downsides and upsides, and you have to always balance risk and

benefit as you go forward.

Now, I want to put this to you, and just let me know whether or

not -- perhaps this is the wrong analogy to use -- for many people out there are

parents. Iím a parent myself. My child -- we use time outs at home. We isolate

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the child from the room. My daughter, if she jumps up on the couch, she has

got to go in the next room. We talk to her, after itís done, why she has been in

there, and she doesnít like it. My son, who is 2, we started on him about 2, 2-

and-a-half. He gets to sit on the step. He doesnít like that. And if we say, "Are

you going to have a time out?" he doesnít like this. And somebody will say,

"Certainly, he doesnít like it," somebody certainly could characterize that as

aversive. Do you think that that kind of -- and thatís certainly a behavioral

management that doesnít rely on corporal punishment, that uses, sort of, a

negative kind of an action to control or shape a childís behavior. And of course,

there are always consequences in life. Adults need to learn that. But is that an

inappropriate analogy to use in this kind of therapeutic situation or not?

MR. BALL: Iíve heard that analogy used, and I think people have

said, well, you canít take-- If you had a child and your child was about to run

into the street, and you said very loudly, "No," there would be a real positive

reason why you were doing that. Your 2-year-old would not understand, but

they might understand the no. Iíve heard people say, "Well, you canít simply

take that analogy and use it on people who have such challenging behaviors."

The thing that we need to recognize is, the aversive or the treatment

that we use may need to be somewhat different for someone who has much

more challenging behaviors, and someone for whom a very, very different

method of treatment might be necessary.

I have two children. One has a disability, the other does not. She

does not have autism. She has mild mental retardation, and thereís some

physical involvement. The way I discipline my girls is very different, because

they both respond to very different things. I know that my 14-year-old, who has

a disability, if we ask her, "Youíve just gotten to the point where you need to sit

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in your room by yourself," she hates that. My older daughter would go sit up

there and read for a while. So what we do is, we do something that the person

doesnít like, and thatís a way to get a positive behavior.

But I think what we do is, we adjust it. We individualize it. Keep

in mind, that when we talk about an individualized habilitation plan, the first

word is individualized. Hopefully, what weíre doing in those plans is coming

up with something that is very particular for that individual. We would also

want to make sure that it doesnít go overboard, the least amount that is

necessary to enable that person to have a better quality of life.

ASSEMBLYMAN CONAWAY: I would call that training for

adulthood, right? Because, of course, there are positive and negatives in what

we do, in my view, right?

MR. BALL: Yes.

ASSEMBLYMAN CONAWAY: Thatís life, really, isnít it?

ASSEMBLYWOMAN WEINBERG: Thank you.

Thank you very much. Thanks, Mr. Ball.

ASSEMBLYMAN PAYNE: May we have Dr. Spitalnik, please.

UNIDENTIFIED SPEAKER FROM AUDIENCE: She stepped

out.

ASSEMBLYMAN PAYNE: She stepped out. (laughter)

Weíre getting ready to move on.

D E B O R A H M. S P I T A L N I K, Ph.D.: Yes. Thank you.

ASSEMBLYMAN PAYNE: Identify yourself and your affiliation,

please?

DR. SPITALNIK: Yes. Iím Dr. Deborah Spitalnik. Iím a

psychologist, Professor of Pediatrics and Chief of Developmental Disabilities,

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and Director of the Boggs Center on Developmental Disabilities at UMDNJRobert

Wood Johnson Medical School. I thank you for the opportunity to

appear in front of you today. I also am the immediate past chair of the

Presidentís Committee on Mental Retardation. But I would address you in my

role as--

ASSEMBLYWOMAN WEINBERG: Is that the President, as in the

United States?

DR. SPITALNIK: As in U.S., yes. The Presidentís Committee on

Mental Retardation.

But I address you in my role as Executive Director of the Boggs

Center, New Jerseyís University Center for Excellence in Developmental

Disabilities, and our responsibility to both improve services for people with

developmental disabilities and advise policy makers. I provide these comments

on the substitute legislation, and, also, with the intent of strengthening that

legislation.

As sponsors of all of these bills, you are to be congratulated for

promulgating these bills which begin to bring New Jersey into line with the

growing national consensus on treatment and protection of individuals with

developmental disabilities and those with traumatic brain injury. Your actions

are courageous, but rest upon a firm foundation of research, clinical practice,

and public policy that include the right for individuals to be free from harm and

physical and chemical restraint, the right to be free from involuntary restraint,

both things; and the view of not using restrictive treatments and relying on them

for treatment.

The ARC of the United States promotes the use of positive behavior

supports, as does the Association for the Severely Handicapped, the American

117

Association on Mental Retardation, and the Council for Exceptional Children.

As sponsors, you are to be commended for the intent of the bill and

the specific description of the condition under which physical and mechanical

restraints are allowed and not allowed. But the substitute bill needs to go

further. In the case of the need for emergency restraint, the requirements go a

long way to ensure the safety of individuals, both with traumatic brain injury

and developmental disabilities, but there are still significant weaknesses in the

bill. The difference that I pose to you is not the issue of whether we outlaw all

restraints or allow them in some circumstances, but what do we do in addition

to mandating or regulating the use of restraints?

The requirements that presently are enunciated in the bill do not

sufficiently address the responsibilities of facility administration and

professionals to address the behaviors at issue that have caused the need or the

perceived need for restraints. The responsibility to conduct a functional

behavior analysis, to understand the ecological conditions, as Dr. Henning

spoke about -- the health, the environment, the individualís learning history and

skills, the competency of staff -- that, those things that predict and maintain

problem behavior such as aggression, self-injury, and property destruction.

This affirmative responsibility must be built into the bill and

applies to both emergency situations and, also, any situations where one would

consider planned intervention and the use of restraint. The requirement in the

substitute bill, that the interdisciplinary team determines what less intrusive

techniques have been successful in protecting the person or others, does not

adequately protect the individuals and does not really permit the intention of

the bill to flower and benefit these individuals. This law must be strengthened

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by a requirement that a functional analysis of a personís behavior be conducted

by an independent, qualified behavior analyst following any use of physical or

mechanical restraints.

To restrain a person because the services and supports he or she is

receiving are inadequate is too ineffective and to blame the victim. To train

personnel to apply restraints safely does not ensure that they will be used

appropriately, nor that they will reach the end point that we collectively desire

of helping individuals live more independent, fulfilled life. Consultation with

a review committee is not sufficient unless we mandate that that capacity is

both within our institutions and our community programs.

I urge an additional caution with the language of the proposed bill

and the monitoring of the implementation. This is something that Dr. Conaway

mentioned. The notion of safeguarding equipment, while in some instances

actually keeps people safe-- We cannot hide behind that rubric in terms of

minimizing the need for active and appropriate positive environments and

positive supports.

The Boggs Center at UMDNJ is interested in continuing to assist

the Legislature and the Department of Human Services and the Division of

Developmental Disabilities in developing this behavioral and programming

capacity to make the issue of the use of restraints fade greatly, if not completely,

into the background.

Thank you.

ASSEMBLYMAN PAYNE: Thank you very much, Doctor.

Yes, Doctor Conaway.

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ASSEMBLYMAN CONAWAY: I wanted to look at the text of the

substitution, and that would be on Page 4. I donít know if you have it in front

of you or not.

DR. SPITALNIK: I donít, but Iím sure--

ASSEMBLYMAN CONAWAY: Itís fairly straightforward, and Iíll

just pose it to you.

DR. SPITALNIK: Thank you.

ASSEMBLYMAN CONAWAY: In Section 3, subsection -- in

Section 5, Subsection A-3 -- I think it was -- Page 4. It deals with the restriction

or prohibition of "isolated in any manner." Iím curious as to how you would

define isolated in any manner? I use the example of my children who I sent to

the other room to change their behavior and to get them to listen.

DR. SPITALNIK: Right.

ASSEMBLYMAN CONAWAY: What do you think the effect of

a prohibition-- How do you define that term? Is it separation from the group,

which can be distressing? I mean, my children sometimes cry when I put them

in time out.

DR. SPITALNIK: Right. Right.

ASSEMBLYMAN CONAWAY: Or are you talking about

something thatís much more prolonged or closed in, perhaps, or confining when

you talk about isolation? Itís not defined here. Do you have any concern

about the use of that word and itís prohibition in this bill?

DR. SPITALNIK: About permitting the use of isolation?

ASSEMBLYMAN CONAWAY: Yes.

DR. SPITALNIK: I think one of the shifts that other people have

testified to, but I donít think have necessarily made as explicit, is that in the

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technology of positive behavior supports there is-- Part of the theoretical

underpinning is, that the reason for a lot of the kinds of behaviors that are often

subject to restraints is an inability to communicate oneís needs, and inability to

form relationships in the traditional way that individuals without disabilities

may, or to have enough stimulation in their environment.

The way that I think of positive behavior supports is, I come home

and say to my husband, "Iíve had a horrible day. I need a hug." And my

husband gives me a hug, and heís not reinforcing me for having a bad day. Heís

giving me a hug to provide me with supports.

Dr. Henning testified to Matthew reaching out for touch and for

connection. A lot of the hierarchy of the traditional behavioral programming

takes individuals who are living in the most deprived environments and deprives

them even further, with the notion that until they learn to be good or compliant

or fit the mold that our expectations of their behavior have, that we will not

provide them with a rich, stimulating environment.

ASSEMBLYMAN CONAWAY: Thatís wrong. Thatís wrong.

DR. SPITALNIK: So I think the shift that Iím talking about, and

the shift of why we canít just rely on the issue of the placement of restraints or

when theyíre used, has to be towards enriching the nature of the environment

that the person with the disability is in. It speaks to a lot of the concerns that

Assemblyman Rooney was talking about in terms of staff and programming. So

thatís why Iím urging that you not just think of this as a bill regulating

restraints, but a bill that deals with protections about restraints in the context

of a rich environment that enables people to learn, to relate, and to develop.

ASSEMBLYMAN CONAWAY: I agree with that.

DR. SPITALNIK: Okay.

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ASSEMBLYMAN CONAWAY: And Iím not a professional there --

but that sounds absolutely right to me, and from what Iíve been able to read,

that weíre talking about a wholistic view that involves this positive

reinforcements that youíre talking about -- and some of us believe -- in concert

with some of the things that might be considered negative.

Would you talk about the routine intake and evaluation of a new

patient in a facility dealing with those who have developmental disabilities?

Now it sounded like, from your question, that a functional behavioral analysis

is not done in every case?

DR. SPITALNIK: Thatís absolutely true--

ASSEMBLYMAN CONAWAY: Thatís true.

DR. SPITALNIK: --that itís not. A functional behavior analysis

is not a one-time--

ASSEMBLYMAN CONAWAY: It should be an ongoing thing.

DR. SPITALNIK: A functional behavior is an ongoing response to

an individualís behavior or the needs of the situation. To comment on your

question about the intake, I think that would be highly variable depending on

whether it was in a developmental center -- and I think thereís variation across

the seven State-operated centers -- a private facility such as Bancroft or

Spectrum, or a group home or other community residential facility.

We do know that often individuals, when they come from

institutions to the community, do not come with a complete package of

information, so that we know that information about an individual gets lost.

But the kind of analysis that Iím talking about should be done when an

individual enters a situation, when theyíre both progressing and when new

behaviors appear.

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But my point to you, from a regulatory point of view, is that the use

of restraints should trigger a professional and paraprofessional response that

looks at the situation and tries to remediate the situation, and the relationship

between the individual and the situation, that has caused the need for response.

We can regulate response, but without enriching environments, without giving

individuals communication skills, without giving individuals ways of negotiating

that environment and relationships, we will not make the kind of progress that

it is, clearly, your heartfelt intent to bring about.

ASSEMBLYMAN PAYNE: Assemblywoman Weinberg would like

to ask a question.

ASSEMBLYWOMAN WEINBERG: Yes, I just have a quick

question. Do you see cases where the use of restraints should be built into the

IHP with these safeguards?

DR. SPITALNIK: Well, my colleagues in Pennsylvania utilize a

system like that, but for a very small number of individuals -- there is the feeling

there, and I think they have, as a state and as a system, paid a tremendous

attention to both the issue of positive supports and behaviors -- situations where

individuals who have had particularly intractable behaviors have needed to have

the use of restraints applied. And so that I think, for such situations, building

it into the IHP can make sense. However, my concern is that I think those

situations are so far fewer than the degree to which we see that in place right

now in our developmental centers, in New Jersey particularly, that I would want

to assure a degree of rigor in making sure that other approaches were truly being

put in place. Not until we got there, but also if we did get to the point of

building this into the IHP, that we would continually and intensively be

providing positive programming to diminish that use.

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ASSEMBLYMAN PAYNE: Yes.

ASSEMBLYMAN ROONEY: I almost have my question answered,

because Assemblywoman Weinberg said almost the exact thing that I was going

to ask. Looking at this, with the IHP and everything, as far as the plan, what

Iím hearing you saying in between the lines is, basically, it really is not-- I think

there were two things that kind of struck me as -- was the safety of others where

a restraint plan or restraint action by the provider occurred. If it was to prevent

injury to another person, either with the staff or another client/resident, that

might have been something that you would agree to. But I would like to get an

idea of where you think restraint is absolutely -- should be applied in any

situation? Can you give us any example other than where itís to prevent injury

to another person? Can you think of any other reason why restraints should be

applied to any of these clients?

DR. SPITALNIK: Well, I think the individual with a disability

needs to be safe and staff need to be safe.

ASSEMBLYMAN ROONEY: We agree.

DR. SPITALNIK: I think that restraint is, as I see it, a last resort.

And that, if one has applied restraint, that is saying to me that there are other

things that, also, needed to have been in that environment, or need to be built

into that environment, that would prevent that from occurring in the future. So

I guess what Iím saying, directly, is that Iím not saying I would prohibit any use

of restraint ever. I would certainly minimize it. I would tightly control it. But

I would, also, use it as a constant trigger for renewing, reviewing, and enriching

the environment and the programming that has come to bear. I think that the

approach of only regulating restraint, without looking at the corresponding side

of either the depriving or the potentially enriching nature of environments, will

124

not get us further along. I think the worst thing we could do is to drive this

issue underground, because we would not have accountability for peopleís wellbeing

and safety, and we, also, would not be fulfilling the responsibility for

providing treatment for the people under the Stateís care.

ASSEMBLYMAN PAYNE: Thank you very much.

Weíd like to move on. We have about another five or six hours of

testimony here. (laughter)

ASSEMBLYMAN ROONEY: I have a 5:00 deadline, absolutely.

ASSEMBLYWOMAN WEINBERG: As a matter of fact, weíre

going to have to discuss how weíre going to handle this, because, obviously,

weíre all going to be on sensory overload, and we will not be able to absorb this,

and there are many, many people who have signed up to testify.

ASSEMBLYMAN ROONEY: Assemblywoman, if I might suggest

we put a time limit. I have to leave at 5:00. I apologize, but thatís my absolute

deadline. Itís been five hours of hearing. I think it should be continued to

another time. Just explain to everybody either--

ASSEMBLYMAN PAYNE: Well, that would be very difficult to

do. We have people here that came here to testify today, and if we say another

time, Iím not sure how we would be able to handle that. Letís restrict our

comments and questions to a -- very, very focused. Much of the discussion

weíre having now we can have subsequently, because I think thereís going to

have to be some further discussion on this.

Let me ask if Ms. Kathy Wigfield is here? Please, then.

K A T H Y W I G F I E L D: Thank you for allowing me to be here today.

ASSEMBLYMAN PAYNE: Are you speaking into the mike? Is the

red light on? (referring to PA microphone)

125

MS. WIGFIELD: Yes, the red light is on.

I want to thank you for allowing me to speak here today. I want

to thank you for having these hearings.

I have a great deal to tell you, but itís not possible in five minutes.

ASSEMBLYWOMAN WEINBERG: Would you identify yourself

first?

MS. WIGFIELD: Excuse me?

ASSEMBLYWOMAN WEINBERG: Identify yourself.

MS. WIGFIELD: Iím sorry. My name is Kathy Wigfield. Iím a

parent of a developmentally disabled individual with behavior problems. Heís

currently in a moderate security unit in New Lisbon Developmental Center.

Frankie was placed in New Lisbon Developmental Center in 1994. I cried when

I brought Frankie down to New Lisbon, and I cry every time I leave there for the

two-hour drive home, because of the treatment that he receives there. I am

adamantly, adamantly, against restraints.

If any of you even have a doubt about restraints, Iíd like to invite

you to go down to New Lisbon Developmental Center with me and try on a

four-point restraint, which they would very much like to put into my sonís

program -- in the IHP. I am continually being, to me, harassed. They even

have down on his IHP forms that his proposed guardian adamantly or

vehemently refuses four-point restraints. Since that was put on his IHP, they

are saying that my son is competent and does not need a guardian.

I want to read what I had wrote here. My son is a Dallas Cowboy

fan. He loves the Cowboys. One Sunday afternoon, he was watching a

Cowboy game. They started losing--

126

ASSEMBLYMAN PAYNE: Excuse me. Can I just interrupt you for

one second, please.

MS. WIGFIELD: Sure.

ASSEMBLYMAN PAYNE: You have it written, we have it here.

Can you just go through and highlight -- and maybe just point out one or two

highlights, because we do have it here, and it wonít be necessary for you to read

it. Just summarize it, if you will, please.

MS. WIGFIELD: I have also attached to that, if you could see,

where he was charged with arson by the Human Services Police Department.

Thereís also a letter in there from my son, in the attachments that I gave you.

Itís very hard to summarize these things, but my son was, basically, put in

restraints because he got excited about a Dallas Cowboy game. This is how

New Lisbon Developmental Center uses restraints. And I imagine DDD is very

upset about Matthewís Law and would not want it passed, because itís,

basically, how they deal with or develop behavior programs for people that do

have behavior problems.

I have not yet seen a behavior program developed for my son that

has been effective. Since he has been at New Lisbon Developmental Center, he

has deteriorated a tremendous amount. Itís very hard to sit here. Iím not a

professional person. And with the restraints at this time, I guess, Iím not

making much sense. But the restraints -- I absolutely support Matthewís Law.

I could give you multiple, multiple incidences of abuse in terms of restraints.

Itís really a barbaric way to develop behavior programs, putting restraints in an

IHP.

I hope all of you will review the information that I gave you. And

I, also, gave you my name and phone number. Hopefully, somebody will call

127

me back after theyíve reviewed this information. Itís much too much to go over

here.

ASSEMBLYMAN PAYNE: Ms. Wigfield, thank you very much.

Let me just say that youíre not a professional, either am I, but youíre a parent.

I want to be clear. The reason why I did call you at this time is because we had

a lot of professionals that have come before us. I want to make sure that we do

have parents who, I think, are as -- the most significant part of this testimony.

So I want to thank you very much.

I just had one question. You said that your son was arrested--

MS. WIGFIELD: For arson.

ASSEMBLYMAN PAYNE: A complaint was filed while he was a

client or a patient or what?

MS. WIGFIELD: Yes. Frankie-- What had happened was he was

neglected for the whole day by staff. He was supposed to be checked on,

supervised, at least every 15 minutes. He had gotten up at 8:00 for meds, went

to staff. Two staff people the night before said that he was upset. They made

sure he had his medication in the morning. He went back to his room with no

breakfast, no lunch. Nobody checked on him. Three oíclock in the afternoon

he set a fire, and New Lisbon charged him with arson. I still feel New Lisbon

should have been charged with a crime, not Frankie.

ASSEMBLYMAN PAYNE: I just wanted a clarification of that.

This is a patient or a client in one of our institutions who sets a fire, and youíre

telling me that charges were brought against him for arson.

MS. WIGFIELD: Right. Because he has behavior disorders.

ASSEMBLYMAN PAYNE: Right.

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MS. WIGFIELD: I was told by, off the record, a psychologist,

New Lisbon is known for doing this.

ASSEMBLYMAN PAYNE: Okay.

MS. WIGFIELD: For charging a client that is both

developmentally disabled with behavior problems. If he does not fit into their

behavior program, they charge him with the crime.

ASSEMBLYMAN PAYNE: Thank you.

MS. WIGFIELD: Unfortunately, to them, the judge dismissed the

case, based on the fact that Frankieís not competent to stand trial.

ASSEMBLYMAN PAYNE: Yes. I think itís kind of a paradox

where we have people in an institution for treatment and care--

MS. WIGFIELD: Right.

ASSEMBLYMAN PAYNE: --and we have an incident. I just want

to underscore that so I could understand.

Thank you.

MS. WIGFIELD: Right now, my son is a guest at a moderate

security unit.

ASSEMBLYMAN PAYNE: Thank you very much.

ASSEMBLYWOMAN WEINBERG: We are going to have to limit

the next speakers to no longer than two minutes. Youíre just going to have to

highlight your testimony-- Well, itís going to be impossible for this Committee

to absorb more information if you look at the amount of people who would like

to speak to us. So Iím not being arbitrary. We are trying to get a cross section

of professionals, providers, and parents, and consumers in this field. So you

have to be patient. Weíre trying our best.

129

Iíd like to call up Pat Amos, from the Family Alliance to Stop

Abuse and Neglect.

And then, Diane Conway, from the New Jersey Association of

Community Providers.

P A T A M O S: (speaking from audience) What I was looking to say was--

ASSEMBLYMAN PAYNE: Please.

MS. AMOS: This is off the record.

ASSEMBLYWOMAN WEINBERG: There canít be anything off

the record. Iím sorry.

MS. AMOS: Okay. This is not about the testimony.

Thank you.

What I just wanted to say--

ASSEMBLYWOMAN WEINBERG: Please identify yourself first.

MS. AMOS: Oh, okay. Iím Pat Amos, and this is not about my

testimony. I wanted to say that several groups of people have told me they had

to leave and have left their testimony. So it may not be as bad as it seems in

terms of whoís left.

ASSEMBLYWOMAN WEINBERG: If we have written testimony,

thatís fine, and weíve already received some of people who have to leave. But

go ahead, I donít want to take from your time.

MS. AMOS: Sure. Sure.

Iím Pat Amos, and I have worked for nearly two decades as an

advocate for families and people with disabilities. I have been on the

Governorís Council for Developmental Disabilities, on their executive

committee in Pennsylvania for years. Iíve helped and found and run and served

as president of local and national organizations. Iím a parent of four children.

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My first has autism. My second has Aspergerís, a form a autism. My third has

severe obsessive-compulsive disorder. My fourth is, perhaps, the most

behaviorally disordered of all, because he just entered his teenage years.

(laughter)

For at least the past dozen years, Iíve been receiving complaints

from families residing in Pennsylvania and New Jersey concerning the

inappropriate, frequent, and injurious use of restraints on children and adults

in various facilities, not just any one. Iím here on behalf of those families, and

I want to say to you that the restraint issue is occurring for one big central

correctable reason, and then I want to segue into a quick critique of that

substitute bill, which Iíve had a chance to look at.

ASSEMBLYWOMAN WEINBERG: Can you move directly to the

critique of the substitute bill?

MS. WIGFIELD: Let me just read you my one paragraph, because

that goes to the heart of the critique. New Jerseyís current restraint regulations

have created and perpetuated an unconscionable double standard in which a

restraint classified as treatment is subject to far fewer safeguards, monitoring,

and reporting requirements than the same restraint when itís classified as an

emergency. The resulting bias in many facilities, toward classifying restraint as

treatment, not only endangers people with disabilities, but inevitably results in

the bullying of parents to get their consent, and the blaming of parents for giving

their consent when the restraint leads to harm.

Now, that leads me right into -- and youíre just going to have to

forgive me for working off of notes. Weíve only had two days in which to look

at this substitute. We really came prepared to talk about something else. Iíll

send you my comments in print later.

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The key problems with the substitute bill are, about the only thing

that remains in Matthewís Law is Matthewís name. The substitute bill

condones physical and mechanical restraints as treatment components of the

individualized habilitation plan, and when parents and the human rights

committee give consent that would be the case. Thatís already the case in New

Jersey. This is precisely the problem that Matthewís Law is intended to remedy.

Restraint has no value as treatment. It represents the failure of treatment. It

can only be reduced and subjected to proper safeguard when it is restricted to

safety emergencies.

Two, when restraint is permitted as treatment, all the safeguards

that Matthewís Law introduced -- medical oversight, parental notification, postrestraint

meetings to adopt better approaches, retraining of staff in positive

approaches, reporting to the State, and public documentation by facility -- are

lost to that individual and that family. This is the current double standard of

which I was speaking.

Three, the Division of Developmental Disabilities Circular 34

already provides for parental notification and approval by a human rights

committee before restraints and other aversives can be used as treatment. Itís

in there. That has to happen already. Parents are coerced into signing

permission under the threat that their child will otherwise be removed from the

facility. And as we know all too well, the human rights committee has no

particular incentive to refuse a request, and will act on the presumption that the

facility staff and administrators are the experts who know best. And when an

individual comes under State guardianship, their active protection in such a

situation virtually disappears, along with their parents.

132

The very regulatory requirements that have lead to so many injuries

and deaths would be cemented into legislation in this substitute, making it even

more difficult to change them in the future.

Four, the substitute bill presumes to mitigate the problems of the

human rights committees and their rubber-stamping of restraints and aversives

and treatment plans, by mandating the county-based human rights review

boards be appointed by the commissioner from individuals not affiliated with

the facility or public or private agency. Appointment of new HRCs by the very

State agency that has repeatedly failed to protect, adequately monitor, or even

minimally enforce the basic requirements for care and safety of peopleís

developmental disabilities, not to mention children in foster care, is not an

encouraging prospect.

Fifth, aversives are not prohibited in this bill as they would be in

Matthewís Law, except for persons with traumatic brain injury who are in a

community residence. I want to go back to an earlier comment that was made

here -- why canít we treat children as children? Why would we say that some

people, because they have traumatic brain injury, will not be subjected to

restraints and to aversives? That, I think, is one of the first glimmers of light

that Iíve seen today. My mother always used to say, "Arguments give heat, not

light." That glimmer of light, I think, can lead us out of this tunnel.

I just want to say that it also raises the question, which we see now

in the Division of Developmental Disabilitiesís Circular 19, on restraint that

says that some people, because restraints and aversives are medically

contraindicated, will not have them used in their programs. It may not be part

of their habilitation plan, because thereís some physical reason why it could hurt

them. That means that some people, by regulatory fiat and not by virtue of

133

their behavior, are already exempt. And the substitute bill would recognize yet

another category to be exempt.

So again, weíre saying, why not treat people as people? The

problem with making this special category of people, who need to be restrained

as treatment, and then putting that out there, was shown graphically a week and

a half ago when the Camden County prosecutor came back in the case of

Matthew Goodman and said, "We find no criminal behavior in what happened

to Matthew. We find no criminal behavior because the intent" -- now intent is

a very high standard, right? I could drive drunk and hit someone and say I had

no intent to hit. I donít think the law will agree. But the intent at this point

was not to hurt Matthew. It was to treat his behavior.

This leaves parents without even any legal footing to redress what

happens to their children. This is why weíre arguing so strongly for no restraints

and aversives in the IHP, emergency use only.

Thatís as brief as I can be.

ASSEMBLYWOMAN WEINBERG: Ms. Amos, we allowed you

to go well over the time.

MS. AMOS: I thank you, and Iím done.

ASSEMBLYWOMAN WEINBERG: I realize the pressure we are

putting you all under. We do have your written testimony here.

MS. AMOS: You will have this, because I just had to craft this

sitting there, right now.

ASSEMBLYWOMAN WEINBERG: Okay, thank you.

MS. AMOS: Thank you.

134

ASSEMBLYMAN ROONEY: Madam Chairman. I just want to

get a-- You said something about Bancroft not being criminally responsible for

this, according to the Attorney Generalís office? Is that correct?

MS. AMOS: Yes. The Camden County Prosecutorís Office, a week

and a half ago, after a 10-month investigation, did return their decision that

there would be no criminal prosecution, because there was no intent to harm.

My argument is, that comes out of a climate that we have created in New Jersey

that says these things are appropriate as treatment. Therefore, the staff only

intended to stop his behavior. Over-enthusiastically, they stopped all behavior.

ASSEMBLYMAN ROONEY: I canít believe it. Because DDD has

already said that they found them guilty of abuse and neglect.

ASSEMBLYWOMAN WEINBERG: Weíre not lawyers here, John,

but I guess criminal intent is different from civil.

ASSEMBLYMAN ROONEY: But thereís also criminal negligence,

which is also--

ASSEMBLYWOMAN WEINBERG: Okay. Letís not argue the

case.

ASSEMBLYMAN ROONEY: I know. I have a problem with the

Camden County Prosecutorís Office, if thatís the case.

ASSEMBLYWOMAN WEINBERG: Well, you can address that

to the Senate Judiciary Committee.

ASSEMBLYMAN ROONEY: I think I will.

ASSEMBLYMAN PAYNE: Thank you very much.

May I call Diane Conway?

135

D I A N E C O N W A Y, Ph.D.: Good afternoon, Madam Chairman and

distinguished Committee members. My name if Dr. Diane Conway, and Iím

the Executive Director of the New Jersey Association of Community Providers,

representing over 100 private agencies in the State of New Jersey, serving over

35,000 individuals with developmental disabilities in the state.

The issue of restraint, as you can see today, is very emotional, and

itís very highly charged and very divisive. You can see that I am going to be very

brief, because you do have my written testimony. So, in the interest of brevity,

I will just leave our thoughts in writing.

I support Assemblyman Rooneyís comment that you cannot paint

every provider with a broad brush. You have heard, in some instances, where

the individual indicated that they--

ASSEMBLYWOMAN WEINBERG: Iím going to interrupt you.

Weíre not going to talk-- Letís get back to the bill, specifically, and your

feelings on the Committee Substitute.

DR. CONWAY: Yes. We do support, very highly, the Committee

Substitute -- A-2849, A-2850, and the substitute. We do not support A-2855.

Okay.

ASSEMBLYWOMAN WEINBERG: Now that I asked you to be

brief, can I ask you to explain why? (laughter)

ASSEMBLYMAN PAYNE: You canít have it both ways,

Assemblywoman. You canít have it both ways.

ASSEMBLYWOMAN WEINBERG: Oh, Iíve been trying to get

through my life having it both ways. Why not try here? (laughter)

DR. CONWAY: Well, I think my written testimony goes into that.

We do feel that there are individuals with significant behavioral challenges that

136

present a danger to themselves or others, and that they may need this as a

treatment option. And if they donít get this, then theyíre going to be forced to

be chemically restrained with some very significant medical, long-term,

irreversible effects -- what are the options out there -- or they might be forced to

go out of state to a program far away from their families and people who they

love. And if theyíre out of state, New Jersey does not have the ability to

monitor the service that theyíre getting, as well as they do if theyíre in state.

I also think that if you take this treatment option away, the few

providers who are willing to serve these individuals with severe behaviors will be

disinclined to do so. We do support all the safeguards that weíve talked about

today -- the functional analysis, the staff training thatís indicated in A-2850.

We are fully in support of that. You do have to have safeguards, and weíre not

advocating for haphazard use of restraints at all, but very focused, controlled

use of restraints as a last resort.

And may I say that NJACP has asked DDD to establish a work

group on restraints, and they have done this. That group is very active, right

now, in reviewing literature, in reviewing Federal standards, in reviewing

accreditation standards on a national level. So I would urge the Committee to

use this as a resource in their deliberations.

Thank you.

ASSEMBLYWOMAN WEINBERG: Thank you.

ASSEMBLYMAN PAYNE: Assemblywoman Pou.

ASSEMBLYWOMAN POU: Dr. Conway, Iím sorry.

Thank you so very much, Mr. Chairman.

Real quickly, I just read, quickly, one of your statements that talks

about A-3108, and it talks about why youíre not in support of this. It makes

137

reference to the fact that the bill does not include an appeal process prior to a

monitor being assigned to an agency. I just want to relate that to the parent

testimony that was given here before. What kind of an appeal process does an

institution provide or allows a parent to have in the case of -- and letís use

Matthew Goodmanís situation. What appeal process did they have, if any?

And I understood them to indicate that they didnít have any, yet one of your

comments here, with regards to the bill, is that because this does not provide

an agency that have an appeal process-- How do you make the distinction

between the two?

DR. CONWAY: Weíre not advocating that the parent shouldnít

have input into the treatment program. As it was related by Janice Roach, she

should have had some input. Weíre not advocating that it happened that way.

Parents are a very important part of the decision-making process for treatment.

ASSEMBLYWOMAN POU: Do you have an appeal process

system, currently, for -- under your provider agencies? Is there, currently, a

system?

DR. CONWAY: We wouldnít be the ones who would create that.

ASSEMBLYWOMAN POU: I thought I understood that you

represented these provider agencies?

DR. CONWAY: The provider agencies, yes. But we wouldnít have

an appeal process. Our association wouldnít do that.

ASSEMBLYWOMAN POU: No, no, no. I know that.

DR. CONWAY: It would follow the Division of Developmental

Disabilities regulations.

ASSEMBLYWOMAN POU: Does an appeal process currently

exist?

138

DR. CONWAY: I think it would be different for each agency.

ASSEMBLYWOMAN POU: So thereís no standard appeal process

for each provider, even though it may be the same level of service that that

provider ought to be providing?

DR. CONWAY: If youíre talking about the use of restraints--

ASSEMBLYWOMAN POU: Iím talking about any and all issues

when dealing with a patient, the use of restraint or otherwise. Does the parent

have an appeal procedure that they can go to when theyíre child is placed in that

agency?

DR. CONWAY: No, I donít believe there is a standard.

ASSEMBLYWOMAN POU: I didnít think so.

Thank you very much.

ASSEMBLYMAN PAYNE: Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: You approached an issue that

hadnít been mentioned previously here. We did hear Matthewís parents speak

of how they were told that, "If you accept this -- or 24 hours, take you son out."

But could an unintended consequence of not permitting restraints to be a part

of the IHP be that the individuals with severe problems, they would refuse to

accept these to provide them any kind of treatments?

DR. CONWAY: That probably would be the result -- that many

agencies that have this option would not be able to serve those individuals.

ASSEMBLYMAN THOMPSON: They would be refused admission

here in New Jersey. You said theyíd end up having to go out of state or

something.

DR. CONWAY: And then there wouldnít be very many options.

ASSEMBLYMAN PAYNE: Thank you.

139

Are there any questions? (no response)

Thank you very much.

ASSEMBLYWOMAN WEINBERG: Our next witness is Kevin

Walsh of The Arc of New Jersey. And while Kevin Walsh comes forward, we

were left a statement from Lowell Arye, executive director of Alliance for the

Betterment of Citizens with Disabilities. And if you could work into whatever

youíre going to say, Mr. Walsh -- one sentence that strikes me on Lowell Aryeís

statement that he left is, "For some individuals, the use of restraints is requested

by the individual to prevent them from their self-destructive behavior. Lesch-

Nyhan disease is a rare genetic disorder," and he goes on to talk about selfmutilation.

But whether or not we do not allow something in the IHP, whether

such exceptions could be made--

K E V I N K. W A L S H, Ph.D.: Thank you for the opportunity to speak

today. In the interest of time, I would just like to address a few issues in the

substitute bill that may not have been addressed before.

My name is Dr. Kevin Walsh. I am here today on behalf of The

Arc of New Jersey. I am in my fifth term as the southern regional vice president

of the Arcís Executive Committee, on their board. Iím also a professional, and

I work in the field. Some of that information is on my written testimony, so I

wonít review that.

In general, the Arc is concerned that either bill, potentially, may

have the unintended consequences of causing there to be fewer opportunities for

people in community settings, because of the difficulty of managing people,

either when they come in or whatnot. Our view is that we would like the Joint

Committee to very carefully review some of the parameters in the bill relative to

what it would take to actually implement that.

140

A lot of the testimony weíve heard today has been, in my view -- I

tend to go on data and large numbers -- is rather narrowly focused. But if you

look at it, like, from an epidemiological standpoint, weíve been hearing one

very, very narrow viewpoint. The concern I have is that there are well over 150

providers out in the community who provide community services, who provide

homes for folks. I think, when you look at the use, for example, of emergency

restraints, that it may very well be that those are prohibited or so overly taxed,

relative to the administrative accoutrements they have to wrap around them,

that there may be a conservative movement of those folks to not provide

opportunities for community living.

So I would like the Committee to take into account, for example,

the physician review within one working day. In a group home, that is -- it

seems to me almost impossible. The New Jersey Arc has convened -- oh, about

a month ago -- five physicians, all of whom practice only in the field of

developmental disabilities. And they said that it is nearly impossible to meet the

review of approval for the contraindications of restraints. And Iím sure they

would extend that to subsequent review. I donít even know how that would be

paid for, how appointments would be made. It doesnít seem like thatís realistic

and may cause, then, agencies to say that theyíre not going to apply physical

restraints.

Iím on the committee that reviews all of the programs with the

State. Iím one of the two community representatives that reviews all the

restraint programs that community providers submit their procedures and

manuals for. I actually am the author of the Vineland Program that was

mentioned before. It was written in the early 1980s. Iím a little bit afraid of

walking back to my chair over there.

141

ASSEMBLYWOMAN WEINBERG: Dr. Walsh, as you said, we

do have your testimony here. Iíd like to ask a question.

DR. WALSH: Sure.

ASSEMBLYWOMAN WEINBERG: It said youíre on the Restraint

Work Group from DDD. When was that group formed?

DR. WALSH: It was formed, I think, three months ago, two

months ago. Itís had two meetings. Itís been informing. What I think would

be very good would be for them to come and address a lot of these issues. There

is very many people who understand these issues who donít want to have the

free use and unmonitored use of dangerous procedures with folks. There are

very, very many people who understand these issues, who understand the

protection of consumers, who understand the protection of valued lives, who

understand the protection of community living as very important values.

We also understand how you might attempt to apply behavioral

techniques for very challenging behaviors. My sense is, is that on balance, if

you look at the State of New Jersey and what DDD has put into effect, on

balance, meaning if you look at a representative sample, there are very, very

many people who otherwise may not be able to be sustained in community

settings because people can judiciously use emergency restraints and very

judiciously use programmed restraints.

I think, sitting and listening to the testimony today, that feeling has

not come through to me and, I think, to you, quite as strongly as it might

otherwise have. I think that may be a good place where either -- I donít really

understand the full stages of legislation -- but either at this point or later on that

the New Jersey DDD Work Group on restraints, which is a very eclectic group

and thereís a diversity of opinion, might be helpful.

142

ASSEMBLYWOMAN WEINBERG: Yes.

Herb.

ASSEMBLYMAN CONAWAY: Well, I have heard what has gone

on. Let me ask, and Iíll try to be quick. Bringing back this Lesch-Nyhan

Disease, hereís a person who has "an abnormal compulsion toward

self-mutilative behavior. The self-inflicted damage includes partial or complete

amputation of fingers, nose, and tongue. According to research, these

individuals are reported to be very aware of their disability and aggressive

behavior toward themselves, and restraints are an important part of their

treatment." Now, if we outlaw restraints, you would agree we, therefore, will be

-- have a very difficult time treating people that have this particular disease.

DR. WALSH: Yes. Let me just clarify that. You may be reading

off of Lowell Aryeís document.

ASSEMBLYMAN CONAWAY: I am.

DR. WALSH: I know him, and I am familiar with the issue he was

going to talk about. Lesch-Nyhan is a specific disorder within developmental

disabilities. One of the characteristics -- Iím getting a little bit outside -- but one

of the characteristics of that disorder is that there is frequent sustained

self-injurious behavior. Part of the treatment packages in that situation, I think,

typically use contingent restraint, and then teaching people to gain control over

that behavior that is driven more or less by their syndrome. So there should be

a period of time -- I would expect it would be the kind of sequence that--

ASSEMBLYMAN CONAWAY: Weíre running out of time. I

wanted to be quick. Now the other question I had dealt with the issue of, sort

of, treatment protocols. Because you raised an issue that, also, came to my

mind when reading one of the sections here as, "shall be continued by written

143

order," and, also, a section that I looked at before. One of the questions with

these bills is what, practically, happens out in the field. Now, would you say

that -- how do you see a protocol written, or as being used in this setting? For

instance, now we use protocols in the hospital for post-cardiac surgery and

treatment. Surgeons will use it very often in people coming out of vascular

surgery. Itís used in pneumonia and everything else--

ASSEMBLYMAN PAYNE: Whatís your point?

ASSEMBLYMAN CONAWAY: And these are things where people

can make assessments that are not necessarily the doctorís, so they can continue

along in a timely way with a course of treatment. My concern here is, in a

situation where youíre requiring the physician -- of course, the physician is there,

at least, on a daily basis -- to be right on the spot when these things are -- when

a restraint might be applied according to protocol. It might be impossible to be

there. Do you think that we should, in this bill, allow some leeway for the use

of written protocols when certain kinds of situations arise?

DR. WALSH: I think in the community it is different than the

medical setting. I think we need to be very careful about having written

protocols by physicians who are not present. In the community setting, where

most people with developmental disabilities now live in New Jersey, they see

providers of all different stripe. They see the kinds of doctors that you and I go

to. Theyíre not going to be able to get a written protocol. Theyíre not going to

be able to get a working-day review after that protocol. So my fear is, that if

those provisions stay in the substitute bill, that whatís going to happen is that

there will be many providers who cannot meet that, and then will, therefore, say,

"We cannot do emergency restraints." And what that will have the effect of

doing will be to make certain opportunities for those folks not to be there in the

144

community, and theyíre going to stay in more restrictive settings.

ASSEMBLYMAN CONAWAY: I respect that youíre right. Now,

you guys are looking at this -- and the last question, Mr. Chair, Ms. Chair. The

one suggestion that I have would, as regards the-- See, I believe in peer review.

That if youíre going to, sort of, look over and involve yourself in what a

physician or a professional is doing, that the people who are doing that and

reviewing those clinical decisions ought to be other people trained in the field.

It doesnít mean that other people who are parties to the therapeutic program --

the patients, the parents, and others -- shouldnít be there in some sense. But in

terms of reviewing actual decisions that are made, ordinarily thatís done by

people who are similarly trained and can review what you are doing.

Now, what happens if we were to require, when someone suggests,

according to their evaluation, that an IHP include the use of restraints in

particular circumstances, thatís then kicked upstairs immediately to some kind

of review panel to either assent or disagree with that decision made on the spot.

Was that something that might be workable, and are you looking at that in

your--

DR. WALSH: I believe thatís already in place.

ASSEMBLYMAN CONAWAY: Okay. It happens automatically

all the time. Itís reviewed by some detached, non-involved member--

DR. WALSH: Right now, the policy in the division is that if you

recommend, as part of an IHP, a behavior plan that requires that, that goes to

a behavior management committee and it goes to a human rights committee

review. Your human rights committee is somewhat different. Itís county-based,

which I think also poses some problems because providers cross counties.

145

People live in one county, go to a day program in another county. It may be

reasonable to look at that provision, as well as being somewhat restrictive. A

lot of providers are cross county, and so it would be hard to figure out how to

work that.

But, right now, that does happen. Whether or not you believe those

committees function well, whether or not thereís enough oversight of those

committees, may be different questions, but thatís a question of oversight and

not necessarily one that needs to be in the substitute bill.

ASSEMBLYMAN CONAWAY: And just for clarification, who sits

on those review committees now?

DR. WALSH: Behavior management committees are populated by

a group of professionals that would be the peer-review component. They look

at the "quality," the potential outcomes of the behavior plan. The human rights

committee, as per division circular, must be different in that it can only have

three common members, I think, and must have people from the community,

must have laypeople. The human rights committees take -- itís defined in the

policy circular -- take a common-man approach to whether or not this seems to

violate rights. That balance hasnít been described yet today, but I think that is

there.

It might bear that the substitute bill, along the lines of what Dr.

Spitalnik was saying, of beefing it up -- might be to have a look at that and to

put in language that assures that that oversight process works well, so that there

are outcomes on the oversight process, and that the division, perhaps, needs to

look at that on a regular basis to assure that those committees, indeed, are doing

what theyíre supposed to be doing.

ASSEMBLYMAN CONAWAY: Thank you for your answer.

146

DR. WALSH: Thank you. Thank you for the opportunity.

ASSEMBLYMAN PAYNE: Thank you very much.

Weíre going to do this in tandem now. This might be one way of

saving some time. Iím going to call four people--

ASSEMBLYWOMAN VANDERVALK: Madam Chair and sir?

ASSEMBLYMAN PAYNE: Oh. Yes. Yes. Iím sorry.

ASSEMBLYWOMAN VANDERVALK: I note Assemblyman

Rooney said he has to leave at 5:00. I really have to leave momentarily, and I

really donít want to miss the vote. I donít know how much longer we have

testimony.

ASSEMBLYMAN PAYNE: Well, we have about 50 people-- No.

I think we have about 30 people more to testify. So, I guess, weíll just keep

plodding along. This may have been, in hindsight, maybe a two-day hearing.

I donít know. But the fact is that we have had people come here to testify, and

maybe we can get a voluntary -- a show of hands of those who are willing to

forego their testimony today. Can I see those who will not be interested in

testifying? Letís see -- we have one, two--

ASSEMBLYMAN ROONEY: Why donít we ask for those who still

want to testify? Some of them may have already left.

ASSEMBLYMAN PAYNE: All right, reverse. How many people

here-- Letís hold them up so we can count the people and then we can, kind of,

figure this out.

ASSEMBLYWOMAN WEINBERG: Well--

ASSEMBLYMAN PAYNE: Weíre going to be here all night. All

right. About 20-some-odd people.

147

ASSEMBLYWOMAN WEINBERG: Assemblyman, we have a

practical problem. If anybody wants to see a bill come out today, then there

will be no bill released and there wonít be a law about this, because the

Committee members, certain Committee members, have to leave by 5:00. So

there will be no bill, and we will sit here and hear the rest of the testimony. I

cannot tell you, because this takes an act of the Speaker to get two committees

together like this to again review those bills in front of us. So, itís okay with me.

I will sit here and listen for as long as I possibly can.

I donít know, Chairman Payne, how you feel about that.

ASSEMBLYMAN PAYNE: Yes. Let me hear from--

ASSEMBLYMAN ROONEY: I apologize for having to leave, but

tonight I think we have too many on.

I canít get my microphone on here. (referring to PA microphone)

Okay.

I apologize, but we have a reorganization meeting for a joint

insurance fund tonight. But one of the things I see is that, maybe, neither one

of these bills is the right bill. Iím seeing a situation where people are telling us

that they donít believe the providers are qualified to--

(audience responds)

Iím sorry. Iím sorry. Iím sorry.

ASSEMBLYMAN PAYNE: Please, please.

ASSEMBLYWOMAN WEINBERG: Wait a minute. Weíre now

going to be able to--

ASSEMBLYMAN ROONEY: Would you please let me finish what

I had to say.

148

ASSEMBLYWOMAN WEINBERG: Excuse me, Assemblyman, we

will not get anything--

ASSEMBLYMAN ROONEY: What Iím saying is that I--

ASSEMBLYWOMAN WEINBERG: We will not get anything done

with people screaming from the audience.

ASSEMBLYMAN ROONEY: --donít think some of these providers

are qualified to do restraints. That if there is a client that requires restraint, that

perhaps this is-- The basic providers that weíre looking at shouldnít be doing

any restraints, in the aspect of Assemblyman Munozís bill. That maybe what

we should be saying is, prior to anybody doing any restraints, what we should

be looking at is saying, "Look, this person needs special care that cannot be

provided in a group home. That this person is a danger to other people."

ASSEMBLYMAN PAYNE: Right.

ASSEMBLYMAN ROONEY: And they should be, basically,

placed. Then, the State of New Jersey has a responsibility, whether the

Department of Human Services or DDD, to provide that care, the special care.

ASSEMBLYMAN PAYNE: Thatís the purpose of this hearing, to

get these ideas.

I was going to ask for four people to testify in tandem today, which

might give a different perspective on this whole thing. If I could have -- the

screamers (laughter)-- If I could have the people that-- Let me read these

names off. I think we have Mindy Maranon, Sandra Boyles, Judy Farrell,

Melissa Gaunt. Are they here? Well, what about the rest? Can we have you

up here, please, to testify? Okay.

We have the written testimony of the folks that I called, so Iím just

going to ask you each to summarize what it is youíre saying, okay? You can tell

149

time, and you can see the reality of the situation as it stands now. So, if we

want to start out, I know you have a lot to say. Weíve heard it. But, come on,

letís see-- Identify yourselves, and we can start out with the young lady on the

right.

M I N D Y S. M A R A N O N: Good afternoon. My name is Mindy

Maranon. I can be brief, because I can talk very fast. Iíll read my testimony.

But, in fairness, I do need to say, and this is what I assumed from the

testimony, there are 16 parents that I know of, personally, that were here that

were not advocating A-2855. None of us have gotten to speak today. So I just

needed to say that in fairness. Okay. Iím sorry, and I donít mean to be rude,

and weíre honored to be here.

My name is Mindy Maranon. I live in Monmouth County, and I

am a wife and proud mother of 14-year-old twin boys with autism. If you

understand that we know, firsthand, how bleak life can be for a person whose

entire interaction with the world becomes a series of crisis interventions, i.e.,

emergency restraints or emergency aversives or worse, or worse, and this is

worse. This is not-- Youíre worried about humanity and dignity? Imagine a

world that shrinks to the inner confines of a closed setting or an overmedicated

state. I donít know why someone thinks overmedicating a child is more

humane, or overmedicating an adult, or the cessation of teaching -- weíre all

teaching staffs. Arenít we all entitled to improve and grow, be more involved in

our community, not less, or being isolated from any normal community

interaction because of episodes of aggression, impulsivity, and/or self-injurious

behaviors?

My sonís name is Matthew, also, and I have a son named Alan.

Iím sorry Iím so upset. Use of protective blocking and positive supports are the

150

only available techniques for the treatments available for them at a public,

specialized school. The result: Steady increase in both the intensity and variety

of behaviors that cause my sons to be a danger to themselves and the

community. If you want me to alliterate (sic), I will. Otherwise, weíre talking

about walks in our neighborhood were over; gone were extended family visits;

outings became history; Challenger league baseball, soccer, and basketball -- a

memory; swimming at our community pool went from daily to one time a

summer with three adults in tow; parking lots became perilous hazards because

they would throw themselves on the floor in front of moving cars, or-- Weíve

been thrown out of some of the best places.

So we sought help and studied. I have studied applied behavior

analysis. Iíve studied positive reinforcements. I sought positive reinforcements.

I had natural setting therapeutic management, which is the graduate program at

Rutgers, which is associated with UMDNJ, in my home teaching me. I went for

crisis interventions. You name it, I did it. Anything to avoid using aversives and

restraints. And nothing worked.

And finally -- Iím sorry -- we altered our home environment,

utilized a plethora of plans, including medicating our sons. Loss of life quality

brought us to Bancroft. Now, two years later, the 80 milligram Prozac level for

my son Matthew is down to zero, and Alan is down to 20 milligrams. The boys

have returned to horseback riding, weekly swims in community, invitations to

relatives homes. My sonís eyebrows grew back. My other sonís face is no

longer filled with oozing sores. They are now at the way it should be. They are

now at arms-length treatment. In other words, theyíre no longer on any

restraints. But that is the way itís supposed to be. There was never supposed

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to be -- and I donít know what protocols people are talking about here. As a

parent, you need to know that.

If Bancroft suggested something that I think is abusive to my

children, you can bet Iím there. Itís not happening. So are we always in

agreement? No. But they have never been able to put into effect a plan where

I felt would endanger my child. My children -- they never threatened me that

I have to take my children out either. So I am confused. I need to show you

the other side.

Iím sorry, again. Please excuse my ranting. And please know, as

a parent, that if my repeated broken nose or torn rotator cuff, blasted shoulder

capsule, ripped bicep tendons had been the price to pay to aid my childrenís

advance, I, like every other parent in this room, would offer it up gladly. Do

not mistake a rejection of A-2855 as misinformed or lazy, that would be a tragic

error.

Next week, we are going to a Broadway show, Beauty and the Beast.

Now that may not seem like a miracle in your eyes, but had you walked in our

shoes during the bleak time, youíd surely shout, "Hallelujah," and count your

blessings. Among these blessings is the fact that we live in the State of New

Jersey, not Pennsylvania, not New York, and not Nevada.

With all my heart, I beseech you not to forsake our sons, and

condemn New Jersey families to the desperate search for help outside their own

state, which is what will happen. Iím asking for reason. Iím asking for a

compromise bill. Iím sorry Iíve taken so much time.

And just to let you know, I did hand in letters from other parents

who asked me to speak for them. Obviously, I wonít take any more time.

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I thank you. I understand what hard work youíre doing here. But

please hear our voices, too, and understand there are parents who are successful

-- Iím just speaking for six parents who had to leave -- successful in maintaining

their children in their home because of programs like this, who had to leave

because theyíre still the primary caretakers of behaviorally challenged children.

Iím sorry.

ASSEMBLYMAN PAYNE: Assemblywoman Weinberg.

ASSEMBLYWOMAN WEINBERG: Assemblyman Payne, I just

have to interrupt. I understand.

MS. MARANON: Iím sorry.

ASSEMBLYWOMAN WEINBERG: Itís okay. But I need to know

why you are supporting that--

MS. MARANON: I was advocating--

ASSEMBLYWOMAN WEINBERG: Are you supporting, when you

said the modified bill, are you talking about the Committee Substitute?

MS. MARANON: I was advocating A-2849, because thatís the

only, really, other good option I know. I, specifically, do advocate uniform

protocols around the state. I absolutely advocate a human rights committee,

which is the way that programs that do it well do it -- with the human rights

committee. And I absolutely agree with all of you -- parental input. Because

you may have a child thatís not disabled, but you know as a-- Youíre a doctor.

What kind of foolish doctor thinks the doctor knows more about that child

than the parent does?

ASSEMBLYMAN PAYNE: I donít understand. I donít understand

which youíre supporting.

153

MS. MARANON: Iím supporting what youíre talking about now,

which you havenít written.

ASSEMBLYMAN PAYNE: All right. Okay.

ASSEMBLYMAN CONAWAY: The substitute.

MS. MARANON: But the closest was A-2849, and the new

compromise is a decent compromise, but you still have to get closer.

ASSEMBLYMAN PAYNE: Okay.

MS. MARANON: I am not supporting-- For people to mix up

aversives with restraints and call them the same thing, means theyíre

misinformed. And for people to say, "No aversives, positive supports,"

everything you were talking about, the way you discipline your children, thatís

an aversive. If you put your child in time out and he doesnít like it, thatís

aversive. Thatís an aversive. So people need to--

As emotional as I am being now, Iím asking you, as the legislators,

people who are in this position, donít be as emotional as I am. Please make

sure you get the informed information from people who do it and do it well.

There are parents who would-- I would give my arm at one point to have my

children at Eden Institute, where Dr. Holmes makes sure that parental input,

human rights, and dignity are respected. And unfortunately, someone like that

hasnít spoken, and Iím sorry if Iím being rude. I donít mean to.

ASSEMBLYMAN PAYNE: Thank you very much.

MS. MARANON: Thank you.

Does anyone want to see my beautiful children, you can keep the

pictures. (laughter) Horseback riding, Great Adventure. Iím going to give them

to an aide.

Thank you.

154

ASSEMBLYWOMAN WEINBERG: If I can show you pictures of

my children. (laughter)

MS. MARANON: You may very well do that. Iím an advocate of

all children.

ASSEMBLYMAN PAYNE: Do we agree that the speaker represents

the sentiments of all of you here, in the interest of time? I mean, in one

sentence each--

M E L I S S A A. G A U N T: I guess, I just wanted--

MS. MARANON: Can Missy please speak. She has children with

hemophilia.

ASSEMBLYMAN PAYNE: Okay. Okay.

Your name please?

MS. MARANON: Missy, go ahead.

MS. GAUNT: My name is Melissa Gaunt, and I am here today on

behalf of my children that not only suffer from psycho, social, emotional

disabilities, but they also suffer from a medical fragile disability, as hemophilia.

ASSEMBLYWOMAN WEINBERG: Is your mike on? (referring

to PA microphone)

MS. GAUNT: Sorry.

My children both are diagnosed with hemophilia, along with

autism, bipolar disorder, attention deficit disorder and static encephalopathy.

My children have experienced many issues and grave issues at that.

My child has been in a psychiatric institution for his bouts of climbing on the

roof of our house, due to his inappropriate behavior. My child with autism has

gone full-speed ahead at my house and had ended up in the hospital in critical

155

care for hitting his head and having a concussion, and whatever else. At the

time, he had multiple bruises and contusions.

Iím begging you, that you consider this a serious offense. If you

dare change this bill, you have no idea what this can do to society and to these

people with disabilities. I am here, today, to advocate for the bill, A-2849 and

A-2850, and I oppose A-2855. My husband and I work very hard to keep our

children at home and to keep them safe and happy. These are our goals for our

children. Iím an advocate for people with severe mental illness. I work

volunteering at mental institutions. I know what aversive treatment is. All I can

say is that we have tried everything possible.

Functional behavioral assessments are the first thing, first choice

that we have made to find out what was going on with the child-- He was

having-- They were both having these behaviors. When we figured out what the

behavior was, we tried all sorts of treatments -- positive supports. When all else

failed, and they were, like I said, on the roof of our house and self-injurious --

biting themselves -- we had to take other measures for their safety. This is what

this is about -- safety. Itís not about taking a piece of gum away and calling

that an aversive treatment. This is about their safety, keeping them alive. And

how my heart breaks for Matthewís parents.

But, please, have empathy for my family, too. Because it is the use

of proper behavioral assessments and restraints that are keeping my children

alive.

ASSEMBLYMAN PAYNE: Thank you very much.

Will the other ladies--

S A N D R A B O Y L E S: That was pretty emotional.

156

My name is Sandra Boyles. I have a 12-year-old son with autism

and a 5-year-old daughter. I live in Cranbury, New Jersey.

I appreciate the efforts of this Committee to improve the lives of

people like my son, but like, similarly, to these other two women, I am

concerned about a bill such as A-2855 becoming law. My son is extremely

aggressive and self-injurious. He can be extremely aggressive and self-injurious

and has a long history of it. We, also, started him in a behavioral program that

had all positive reinforcement, no restraint, no aversive, nothing negative. You

couldnít even say no to him. He continued to get bigger and stronger and more

aggressive, and hurting himself and hurting other people.

So we finally decided that what we needed to do was look for a

different option. We went to Eden Institute, which is-- I invite everyone to

come look, because they have miraculous results. They tried positive behavioral

interventions on -- so they started with self-injury, very self-injurious behaviors.

He would pound on his thumb until he would bleed and then smear blood all

over my house. He would pound his head, that kind of thing. This is a day

program. He would do it at school, and then he would do it at home. The

positive behavioral approaches didnít work. It was endangering his health and

his life. So we started with some very, not as positive, interventions until the

least -- the level of lowest intrusiveness was used to stop these behaviors. Then,

in addition, he was extremely aggressive, which-- I know that a lot of people --

that parents that have taught -- their children are living in a residential setting--

My child lives at home. Heís in the community. Heís in the

grocery store. Heís in the church. Heís in the church nursery with babies. He

could kill a baby. He could hurt another person. So we, also -- because we live

157

in the community, we want him to remain in the community, which is also

cheaper to the taxpayers. We also addressed his aggression.

Now, all of this was done, initially, positively, and every single

intervention that was tried, positive or negative, was okayed by the parents, by

me and my husband. If either of us said, "No," that was it. Nothing happened,

we didnít do it. And do you know what? If they tried it for five minutes and

I said, "I changed my mind," they stopped. If they did it for five months and

I changed my mind, they stopped. This is the kind of thing that needs to be

done in order to keep these children in the community. Let the special-needs

population be as much into the community as possible. Letís not force them

into residential settings where they donít know their siblings, they donít know

their families.

ASSEMBLYMAN PAYNE: Can I ask you a question, if I can

interrupt you for a moment?

MS. BOYLES: Yes.

ASSEMBLYMAN PAYNE: You said, if you had some question

about the treatment, and you said no, it was changed. They stopped. They,

meaning?

MS. BOYLES: The school. All I would have to do is call the

director of the school and say stop the treatment, and they did immediately.

ASSEMBLYMAN PAYNE: What school?

MS. BOYLES: Eden Institute, in Princeton, New Jersey.

ASSEMBLYMAN PAYNE: Okay. All right.

MS. BOYLES: And what I wanted to say was, he responded so

beautifully to this treatment. And some of the stuff that people are talking

about -- now I know there are-- His aversives and restraints that were used were

158

very, very mild. But it took an extremely self-injurious and aggressive child and

turned him into a very manageable, nice cuddly child, and I was able to have

another child. If you take this away, he will regress, because we have seen over

periods when, for example, heís been on break and the behavior programs are

not being used, and he will become dangerous.

And you talk about the rights of the handicapped. No one has

talked about the rights of the siblings, and my daughter is 5. He lives at home.

Youíre trying to take a child who is a wonderful child and a wonderful brother,

and if you remove these kinds of interventions, he will, at best, hurt her, at

worse, kill her.

MS. GAUNT: Excuse me, but this is the reality that people with

disabilities, family members, caregivers deal with every day.

ASSEMBLYMAN PAYNE: Would you like to also--

MS. BOYLES: Excuse me?

ASSEMBLYMAN PAYNE: Would you like for your cohort--

MS. BOYLES: Go ahead. Iím done.

T I S H C A P A W A N A: My name is Tish Capawana, and my son, Joey,

is 11 years old and autistic, and also goes to Eden Institute.

ASSEMBLYMAN PAYNE: Is your mike on, please? (referring to

PA microphone) Is your red light on?

MS. CAPAWANA: Yes, it is.

ASSEMBLYMAN PAYNE: Go ahead.

MS. CAPAWANA: Iím sorry.

ASSEMBLYMAN PAYNE: All right.

ASSEMBLYMAN THOMPSON: Leave the button turned on.

159

MS. CAPAWANA: I just wanted to say, basically-- Well, Joeyís

been at Eden for eight-and-a-half years. My husband and I chose to send Joey

there, because of the undeniable success of the comprehensive

behaviorally-based services that they provide. I believe that passage of this bill,

A-2855, would deny our family that choice. I canít stress enough how

important it is for these families to have choices, especially families of children

with autism.

I also want to point out that the State of New Jersey has always

been known for the services available for the treatment of autism, and people

move here from other states to get these services. So now our family, in

particular, weíve turned down a relocation opportunity in order to stay in this

state, and now possibly that could be taken away from us.

The work Eden has done with Joey has helped immensely, not only

with his behaviors but with all he has accomplished so far. And with their help

and guidance together, we continue to help him make progress. Understand that

this is a child who doesnít speak normally, learn normally, behave normally,

interact normally, or respond normally. He tries to go outside without shoes or

a coat in January. He helps himself to food off other peopleís plates. He has

to have his bedroom door and the bathroom door closed at all times. He

shuffles his hands on the ground until they callused and bleed. He presses on

his chin until it bruises and bleeds. However, he would give anyone available

a hug.

He has a good life in spite of his autism, but the reason that he has

a good life is because weíve been able to teach him appropriate behaviors,

allowing him to be able to ski Special Olympics, run track and field. Heís

learned to swim. Heís learned to roller skate and ice skate. I would not even

160

be able to take him on a walk without the services that Iíve gotten, and the help

that Iíve gotten, from Eden.

Iím on a human rights committee at Eden Institute. Thatís just a

part of the accountability process at Eden. It ensures the dignity and rights of

Edenís participants. And some of the programs we review are for self-injurious

or potentially life-threatening behaviors. Others are for less severe maladaptive

behaviors, but all the programs teach appropriate alternatives -- always, always

starting with the least intrusive method.

ASSEMBLYMAN PAYNE: Could I ask you to, kind of, conclude,

here, because I think weíve gotten a pretty good idea--

MS. CAPAWANA: Well, I just wanted to say, also, that--

ASSEMBLYMAN PAYNE: And just tell us which ones you

support? Youíre opposed to A-2855?

MS. CAPAWANA: Right.

ASSEMBLYMAN PAYNE: And youíre supporting?

MS. CAPAWANA: Well, A-2849 or the substitute bill that I

havenít really read.

ASSEMBLYMAN PAYNE: Thank you very much. Thank you

very, very much.

Now weíre going to take a one-minute recess right now, and we will

be back.

ASSEMBLYMAN THOMPSON: Mr. Chair?

ASSEMBLYMAN PAYNE: Yes, Assemblyman Thompson would

like to--

ASSEMBLYMAN THOMPSON: So, in summary, in all four of

your cases, your children were in treatment programs in which restraints were

161

used, and you feel that this was an integral and positive result, that it helped in

the case of your children.

MS. BOYLES: It was absolutely necessary to the safety of other

family members, especially other children.

MS. GAUNT: And their well-being, their safety. All other aspects

are also being included, all other therapies.

MS. MARANON: I just wanted to say that restraints were used for

a very short period for my children, but please understand the way A-2850 (sic)

is worded--

MS. CAPAWANA: A-2855.

MS. MARANON: Thank you.

Aversives -- weíre not talking about it, but thatís a big part of what

youíre killing. Restraints arenít one piece. The aversives were a part of my

childrenís program -- successfully were part of my childrenís program. They are

no longer being used because they are no longer needed. When my children

went to a program that barred the use of aversives or restraints and only allowed

for restraining in emergency situations, the escalation of inappropriate behaviors

and the decrease in any possible learning was a nightmare. I couldnít even take

my children to a place where there was a parking lot. Thatís what Iím saying to

you, from there to being able to take them to New York City -- two of them,

155-pounds-plus each -- to a Broadway show does not seem a lot to you. To

me, itís amazing.

ASSEMBLYMAN PAYNE: Thank you.

MS. MARANON: Thank you.

ASSEMBLYMAN PAYNE: Thank you very much.

Weíll take a recess.

162

(RECESS)

AFTER RECESS:

ASSEMBLYWOMAN WEINBERG: Okay. Could everybody take

their seats again, please, because we will be hearing more testimony.

Okay. Lydia-- I apologize, but I canít read your last name.

P-A-J-L-I-N-A-W-A-N. Is Lydia here? (no response) She did not indicate

whether she was speaking in favor or not.

Angela Caristo from Cerebral Palsy, in favor of A-2855.

Angela.

ASSEMBLYMAN PAYNE: Just to remind you. We have two

minutes of testimony now, because of the time constraints, please.

A N G E L A C A R I S T O: Thank you. Good afternoon.

ASSEMBLYMAN PAYNE: Good afternoon.

MS. CARISTO: My name is Angela Caristo with Cerebral Palsy of

New Jersey. Cerebral Palsy of New Jersey is in support of Assembly Bill No.

2855. We believe that restraints should be limited to only emergency situations

to protect the physical safety of the person or of others. We strongly feel that

restraints are ineffective and inhumane as treatment for people with

developmental disabilities. Positive behavioral supports is a much more

effective technique to treat persons with disabilities.

I just wanted to mention some other cases. The Hartford Courant

found that across the country hundreds of patients have died after being

restrained in psychiatric and mental retardation facilities. And even here in New

Jersey, The Star-Ledger has found similar cases. They found at least 50 cases

163

alleging medication and treatment error at various developmental centers over

the past seven years. Several centers violated a personís rights by repeatedly

restraining them, tying them or holding them down without just cause.

In Pennsylvania, also, a similar initiative has been passed, which

has been very successful. This initiative has lead to a 74 percent reduction in

the combined incidence of seclusion and restraint. Hours of restraints--

ASSEMBLYWOMAN WEINBERG: Excuse me, but thereís one

minute left, and we do have your written testimony. So go ahead.

MS. CARISTO: I just wanted to say that that was very successful

and that they, also, found that it was effective both for people with disabilities

and for staff that worked with people with disabilities. They found that staff

injuries actually decreased because of -- there was no more need for physical

confrontations.

So Cerebral Palsy of New Jersey urges you to support this important

bill. It will limit the use of restraints and also require prompt reporting, which

is very important to hold agencies accountable.

Thank you for your time.

ASSEMBLYMAN PAYNE: Thank you very much.

Paul Prior. (no response) He left.

Charles Richardson. (no response)

Diana Autin. (no response) Diana Autin.

Terri Howard.

T E R R I H O W A R D: Good evening.

My name is Terri Howard, and I serve as the Director of On-Site

Training for the Crisis Prevention Institute of Brookfield, Wisconsin. Itís

actually colder here than it was in Milwaukee when I left.

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CPI is an international training company committed to helping

organizations create and maintain safe and respectful environments through

quality, meaningful training, educational resources, and consulting services.

First, let me applaud the Committeeís efforts for bringing the issue

of safe management of challenging behavior to the table for discussion. We

have worked with several states in developing legislation in this area. This is

worthy of commending what youíre doing, and to that end, we support the

concept of limiting physical restraint and, also, mandatory training. And I guess

thatís where my comments focus on this evening.

Iíd like you to take a look at incorporating the mandatory training

pieces in whatever restraint legislation you eventually come up with. When

training requirements are left vague and without direction, our experience is that

extremes are often created. That is to say that without guidance, there will exist

some facilities that will only train staff in physical restraints. This handicaps

staff in providing preventive and proactive strategies, such as detection of early

warning signs or antecedents that lead to aggressive behavior, and the need for

physical management, verbal intervention skills, and personal detachment skills

for staff. In addition, there will be those that boast a restraint-free environment,

and therefore, limit training staff in safe, nonharmful ways of physical

management.

While this seems to be a commendable goal, many times staff are

ill-equipped, then, to deal with the realities of temporary, out-of-control

behavior. This can result in staff relying on primal instinct -- in other words,

fight or flight, or freezing up -- rather than safe ways of managing behavior.

It is our belief that mandated, physical restraint training should

include elements such as verbal intervention strategies, staff debriefing skills,

165

and, also, understanding the risks of restraint. We also believe that training

cannot be a one-time event. In everything that Iíve read in proposed legislation,

there is information about mandatory training in six months or a one-time

training. It has to be ongoing. So, in that, we would recommend ongoing

training, refresher training, regularly scheduled refresher training sessions, and

implementation improvements based on information learned from the debriefing

process, which I also think is missing.

ASSEMBLYMAN PAYNE: Thank you very much.

MS. HOWARD: Youíre welcome.

Iíd just like to ask Dr. Gina Del Gindice-- (no response) She left.

All right. I would just tell you that the doctor was going to speak in favor of A-

2849.

And, also, Charles Richardson was speaking in favor of A-2849 and

A-2850.

Paul Prior, who left, was speaking in favor of A-2849 and A-2850.

Diana Autin was in favor of A-2855.

Iíd like to call Carol Dougherty, who was opposed to A-3108. (no

response)

Diane Gruskowski. Identify yourself, please.

ASSEMBLYWOMAN WEINBERG: Assemblyman Conaway just

reminded me -- as youíre getting ready -- we are going to hold the training bill.

So if anybody wants to speak, specifically, on that, that bill is going to be held,

and Iíll explain it all later. But, go ahead.

D I A N E G R U S K O W S K I: My name is Diane Gruskowski. First of

all, Iím in favor of A-2855. Iíd like to talk on neglect and abuse. My daughter,

Danielle, was a beautiful 32-year-old young lady.

166

ASSEMBLYMAN PAYNE: Is your mike on? (referring to PA

microphone)

MS. GRUSKOWSKI: Excuse me?

ASSEMBLYMAN PAYNE: Is your red light on?

MS. GRUSKOWSKI: Yes. Closer.

Danielle, who had Rett Syndrome, was developmentally disabled,

non-verbal, non-ambulatory. Tragically, my daughter Danielle passed away

November 5. The circumstances of Danielleís death is outrageous. Danielle

had difficulty breathing during the night and a reported fever of 105 the morning

of her death -- 911 was never called. Instead, Danielle was taken by the Edison

Group Home van to the doctorís office in New Brunswick and -- where she

arrived not breathing. CPR was administered in the doctorís office, but by that

time, it was way too late for Danielle. Ironically, the hospital is directly across

the street -- Robert Wood Johnson. When I asked the director what happened

that day, he said to me, "I guess it was a bad judgment call." A life-threatening

situation, and itís a bad judgment call.

Many changes have to be made in how the State allows provider

agencies to operate. Iíve spent many sleepless and tearful nights since the death

of my precious daughter, Danielle. I entrusted Danielle to a provider agency

that assured me that all her needs would be met, and promised a good quality

of life for my daughter. My daughter did not have a good quality of life at this

facility.

New staff had to learn for themselves on Danielle, because there

was no one to show them. I was there night after night so I could show staff

what to do, otherwise Danielle may not have eaten supper that night or gotten

a drink or repositioned. Danielle went from 105 pounds to a documented 78

167

pounds. It was up to me to let the facility know, because they hadnít noticed

there was a weight problem. Danielleís prescription for a standing table was

ignored for four years. This was a goal on her IHP. To this day, Danielle has

never used a stander. The IHPs are not followed or taken seriously. Most of

the staff isnít even aware of what an IHP is.

The facility and the caseworker, also, couldnít find a music

therapist for another one of her goals. I had to find a music therapist.

ASSEMBLYMAN PAYNE: Ms. Gruskowski, your time it just

about over, if you could just conclude it.

MS. GRUSKOWSKI: Well, can I read real fast? I just wanted to

say that at this facility, she had cellulitis infection, she was covered with feces,

impetigo, dehydration. She was impacted. She had her stomach pumped. Do

you consider this good care? During her first 28 years, Danielle received

excellent care at home. Emergency hospitalizations did not occur.

ASSEMBLYMAN PAYNE: The subject is the restraints. I mean,

weíre talking now. We would like to keep strictly to the legislation that we are

-- rather than the general conditions.

MS. GRUSKOWSKI: The neglect and abuse?

ASSEMBLYMAN PAYNE: The restraints, please.

MS. GRUSKOWSKI: Yes. This is what it, specifically, deals with,

neglect and abuse, is what Iím saying.

ASSEMBLYMAN PAYNE: Could you just please conclude it as

much as possible. Weíd appreciate it very much.

MS. GRUSKOWSKI: Okay. Well, Danielle was given a cold

shower to try to wake her up. The agency director told me that it never

happened when I questioned them. I insisted on an investigation and a report

168

from the Special Response Unit from DDD -- TREN-#1831. It started off,

"Dear Mrs. Gruskowski, there is a preponderance of evidence to substantiate

abuse, namely the caregiver administered a cold shower to awaken Danielle."

There were three recommendations: One, the agency should cease this practice

immediately. My question is, who is accountable? Where is the supervision,

and where is the training?

Appropriate disciplinary action -- my question is, did staff received

counseling? Did the victim receive counseling? No. Staff training on consumer

rights -- the caregiver that worked with our low-functioning loved ones are not

receiving the appropriate training.

ASSEMBLYMAN PAYNE: You donít believe me. We are all very,

very impassioned about this entire area, but weíre going to have to ask you to

please conclude. Youíre talking about training and things like that. Weíre not

going to deal with the training aspect of it today. So, if you can, just conclude.

Weíd appreciate it very much. There are other people that would like to testify

as well.

MS. GRUSKOWSKI: Okay. Danielle is one of many victims of

provider agencies. Even though I followed all the rules and the chain of

command, I was let down. My daughter was let down. Shame on everybody.

Everyone failed Danielle. I want you to feel my pain.

Iím here today, because I didnít know where else to go. There are

many more Danielles out there with no one to speak for them. Please help us.

Danielle will never be forgotten, and we will never go away. Therefore, I am

against aversive treatment, especially for the developmentally disabled. Proper

training and knowledge is essential. Certification is demanded. Monitoring

should be done by an experienced, independent party only.

169

Thank you.

You have my written testimony. I have a lot more in there.

ASSEMBLYMAN PAYNE: Yes. Thank you very, very much. I

appreciate it.

ASSEMBLYWOMAN WEINBERG: Margaret Griscti. Iím sorry.

Iím sure I mispronounced that.

M A R G A R E T G R I S C T I: Yes. Iím Margaret Griscti. My son lives in

the same group home that Danielle did. Iím going to summarize it, but my

speech was only two minutes anyway.

New Jersey is going backwards instead of forwards, and the abuse,

neglect, and deaths are escalating. Years ago, we had unannounced inspections,

not any more. We had a public advocate, not any more. Other states are

leaving aversive treatment behind, not New Jersey. So I support Matthewís

Law.

As far as some of the bills containing training information, I agree

with that young lady that was here from Wisconsin, was it? On-the-job training

means no training. Training must be done before the job and be ongoing, as

well as formal, not the haphazard way that it is done. Staff must be certified.

My son, too, suffered abuses and neglects because of poor training -- cold

showers, bruised feet, outdated food, fractured finger, improper doses of liquid

meds, running out of food, poor dental hygiene, a broken femur, and never

receives the proper training for the asthma apparatus that is needed for him.

As far as monitoring, A-3108 is the first step towards supervision

and accountability. Supervision and accountability are nonexistent at every

level. The State, the company, the group home managers, and the direct care

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level -- everyone checks paperwork, not people. Bill No. 3108 is the first step,

but we need many more steps. Independent monitoring is needed.

Thank you.

ASSEMBLYMAN PAYNE: Thank you.

What facility are you talking about?

MS. GRISCTI: Spectrum For Living.

ASSEMBLYMAN CRYAN: This is in Edison?

MS. GRISCTI: Yes.

ASSEMBLYMAN CRYAN: I have a question for you, in a

follow-up. Did you have issues with the IHP? Because the bill weíre

considering is A-2855, and it deals with the IHP.

MS. GRISCTI: Again, as most people said, IHPs are not followed

very well.

ASSEMBLYMAN CRYAN: I just want to be direct when I ask you,

because-- Was your son and his IHP, was it part of his regular care and was it

followed?

MS. GRISCTI: In my case, it was followed because I was up there,

back every day. I visit every day.

ASSEMBLYMAN CRYAN: Okay. Because the IHP is a

fundamental part of the bill that weíre going to vote on. So, staying on the

program here, did you feel as if the staff, in terms of the understanding of your

sonís IHP, was adequate and was followed?

MS. GRISCTI: The only reason it was followed is because I hung

a sheet on his bedroom door with times and a routine for him. It wasnít

because of the IHP.

ASSEMBLYMAN CRYAN: Because of your perseverance?

171

MS. GRISCTI: Because of my perseverance.

ASSEMBLYMAN CRYAN: Okay. Thank you.

ASSEMBLYMAN PAYNE: Thank you very much.

Nancy Weiss. (no response) Not here. Okay. Ms. Weiss was

going to speak in favor of A-2855.

Dr. Christopher Oliva. Please identify yourself and your affiliation.

C H R I S T O P H E R M. O L I V A, Ph.D.: Iím Dr. Christopher Oliva,

and Iím an Educational Behavioral Consultant working in New Jersey,

Connecticut, New York, Pennsylvania, and Massachusetts. Iíve been in this

field since 1973. I was trained as a behavior modifier when there wasnít

anything else to do. There were not many strategies. It was very experimental.

It was like what Skinner did to cats or dogs -- excuse me, mice and pigeons --

but applied to human beings.

In the 1980s, there was an advancement in behavioral science. It

was called understanding the value -- the communication value of problem

behavior. And since that time, weíve developed positive behavior supports. It

is a known technology, and proven. However, it seems that there are many

professionals in this field that insist on using the í60s and í70s procedures.

They have never really fully embraced positive behavior supports, even though

they embrace the language.

When I work in New Jersey, at the request of a parent or a school

district, and review a behavior plan of a child theyíre ready to send away to

some residential school, I often find that there is a disconnect between the

assessment, the functional behavior assessment, and the positive behavior plan,

because theyíre really unrelated if the professional doesnít use the assessment to

actually make the plan. And it happens frequently when that happens.

172

Parents, in my experience, that embrace the programmatic restraint

and aversives are people that have not had -- their children have not had the

benefit of real positive behavior supports. So there are people out there that

have the words about positive behavior supports, but, in fact, they really donít

do it. Blocking has substituted for restraint in many situations that I have been

in. It has not been necessary to lay hands on people to keep them safe, whether

itís head injury where people can block -- head injury with hands or against

objects. It is a much less intrusive way to assist people to stop hurting

themselves. Also, staff provoke people into those severe problem behaviors,

behaviors that eventually require restraint. Positive behavior supports, when

you truly do it, you do everything possible to avoid, on a meaningful level, to

avoid a person from getting upset to the point where they hurt themselves or

someone else. And when they hurt someone else, they usually hurt staff,

because theyíre really angry at staff usually -- about the rules, the arbitrary rules,

and the restrictive procedures that theyíve had, lack of choice in their lives.

ASSEMBLYMAN PAYNE: Thank you. Thank you very much.

ASSEMBLYWOMAN WEINBERG: Thank you.

ASSEMBLYMAN PAYNE: At one point, did you say that the

assessment is not used, that they developed a plan in an institute.

DR. OLIVA: Many times, yes. This is in Federal law, in IDA.

ASSEMBLYMAN PAYNE: Okay.

DR. OLIVA: And they say, "Okay, Federal law. Weíve got to do

this assessment." And then you look at the plan, and the plan bears no

relationship to the assessment. Federal law says itís got to.

ASSEMBLYMAN PAYNE: Okay. All right. Thatís where

monitoring comes in.

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Thank you.

ASSEMBLYWOMAN WEINBERG: Richard Royse, from New

Concepts. (no response) He was going to speak in favor of A-2849.

John Thvedt. (no response) Who was going to speak in favor of

A-2855.

Andrew Howard, who asked, if possible, to testify early in the

afternoon. (laughter) You are opposed to A-2855. Iím sorry. As you will see,

this is the first time we noted that. My apologies. Had you asked to speak late,

we would have called you early.

A N D R E W S. H O W A R D: I wasnít going to leave.

Iím here-- Again, my name is Andrew S. Howard. Iím the father

and legal guardian of Elana D. Howard, a 24-year-old adult, living in a group

home run by Bancroft NeuroHealth. Elana has been at Bancroft for over 10

years, previously in their childrenís residential program, living on, and then later

off, campus, where she is now.

I thank you for the opportunity to address the limited people that

are still here. I wish that the press was still here, but weíll take what we have.

With respect to the pending legislation, I read on the Internet-- I was very

disturbed by the definitions preceding the detailed bill, where they gave the

example of aversive technique -- means the presentation of a stimuli or

condition to decrease the frequency, intensity, or duration of maladaptive

behavior by inducing distress, discomfort, or pain, which may place the

individual at some degree of risk or physical or psychological injury. Who

would be in favor of that as itís worded there? No one. I would be in favor of

that, because I know my daughter, and I know itís worked. And so would any

174

concerned parent -- or if a child, like mine, who has behavioral problems that

would otherwise severely limit their potential.

Are there other alternatives? Yes. There are various drugs which

limit the frequency of outbursts, but would also further limit her ability to stay

on task. More importantly, they would preclude the possibility of her ever

flourishing or reaching her true potential. Weíve seen children that have been

dealt with drug therapy. Weíve seen alternatives.

We would much prefer restraints on an as-needed basis. Elana alert

and active than drugged into submission. Since Elana is on a regimen of antiseizure

medications, adding more chemicals to her system could only have some

degree of risk of physical or psychological injury. Please try to understand that

when you play doctor, there are consequences. Limit the tools that the

professionals can use, and the next thing you know, the placement of

behaviorally challenged people goes from difficult to impossible.

Alternatives for families would be between drug therapy and

deceptive, and ultimately, more confined restraints than we are discussing here.

Not being able to go to the restaurant, visit a mall, or go to a library are all

forms of restraint. Instead of group homes in a community, there would be

clusters of special homes sequestered to deal with their maladaptive behavior.

Iím not ready to make that trade-off, and donít want anyone less aware of the

specifics limiting my options.

If the State micromanages which tools can be utilized, youíre not

helping my daughter. In addition, youíll make the job of filling provider

positions more difficult, increase turnover rates, and degrade the level of care

that weíre all here trying to improve.

175

ASSEMBLYMAN PAYNE: Mr. Howard, could you, kind of,

conclude now, please.

MR. HOWARD: Excuse me.

ASSEMBLYMAN PAYNE: Your time is up. Just conclude your

statement.

MR. HOWARD: Thank you.

ASSEMBLYMAN PAYNE: Thank you.

ASSEMBLYMAN THOMPSON: Your position is, you support the

amendment, you oppose the amendment, or what?

MR. HOWARD: Iím against the amendment. Iím not in favor of

amendment A-2855. I would prefer the State did nothing than move forward

with a bill like this. I feel that this will set us back.

ASSEMBLYMAN THOMPSON: Iím referring to the Committee

Substitute, as opposed to A-2855. Whatís your position on that?

MR. HOWARD: I have not seen that bill. From what Iíve heard

here, in terms of the compromise bill, I would not be in favor of that. I believe

that, again -- I know that Bancroft has been drug through the mud here.

Nevertheless, we feel--

ASSEMBLYWOMAN WEINBERG: Excuse me, but that is not so.

Bancroft has not been dragged through the mud here.

MR. HOWARD: Bancroft has been accused of--

ASSEMBLYWOMAN WEINBERG: Mr. Howard, I donít want to

argue with you. We are--

MR. HOWARD: --for-profit agency, criminal.

176

ASSEMBLYWOMAN WEINBERG: Excuse me. We are dealing

with bills that have to do with restraints. I said at the beginning of the meeting

that this does not have anything--

MR. HOWARD: I heard you.

ASSEMBLYWOMAN WEINBERG: --to do with the hearing on

Bancroft. We have reminded people who have veered off the subject, and you,

too, are veering off the subject. So, please, stay on the subject of restraints.

ASSEMBLYMAN THOMPSON: The bill permits, with conditions,

the use of restraints in the IHP.

MR. HOWARD: Yes.

ASSEMBLYMAN THOMPSON: The Committee Substitute.

MR. HOWARD: Again, having not been able to review that, I

wouldnít want to state an opinion. I know that, right now, that the current laws

in place seem to be very effective and have, in my case and cases that Iím aware,

have been more than effective.

ASSEMBLYMAN PAYNE: Thank you.

MR. HOWARD: Thank you.

ASSEMBLYMAN PAYNE: May I have Diane and Jim Higgins

here? Parent advocates, youíll identify yourself, please.

D I A N E H I G G I N S: Good evening.

ASSEMBLYMAN PAYNE: Good evening.

MS. HIGGINS: Our names are Jim and Diane Higgins, and weíre

the parents of Timmy Higgins, who is 11 years old, autistic, incredibly special,

and a resident of the Bancroft Program in Haddonfield, New Jersey. Some

background information might be beneficial both in terms of understanding how

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Timmy came to reside at Bancroft, as well as our presence here today opposing

this measure, A-2855, as it is currently proposed.

Three years ago at this time, our life was chaotic and extremely

stressful. Timmy resided at home, and his autism manifested itself in many

ways that are typically associated with autism. That is, lack of effective

communication and socialization. Beyond these issues, Tim manifested other

behaviors that were far more disturbing and dangerous. These activities

included such things as breaking glass, attempting to eat glass -- because after

all, it did look like ice cubes -- pouring liquids onto lightbulbs to see and hear

the pop, removing oven racks, and climbing into the oven, walking across our

fireplace mantel, just to name a few.

In addition, there was a constant threat of elopement, hitting,

biting, pinching, and scratching himself and others. Coupled with all of this,

Tim slept very little, averaging about four hours per night. Eventually, his

behaviors grew to exceed over 1,000 per day, and Timmy required more

intensive supervision around the clock. In fact, it was approximately at this

point that the school that he then attended required two-to-one staffing for

Timmy in the school setting in order to ensure Timís safety and staff protection.

Needless to say, life with Timmy at this time was difficult, exhausting, and

unstable. We were frantic and continued our search for assistance to help with

our son.

Timmy had already previously completed a five-week, in-patient

stay at the Philadelphia Childrenís Seashore House, Biobehavioral Unit, in

November of 1998, and was still a part of their outpatient program. However,

this no longer seemed effective, and Timmyís behaviors escalated to the degree

that another inpatient stay was warranted. This time, Tim resided for eight

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months, from August of 2000 to March of 2001, at the Kennedy-Krieger

Neurobehavioral Unit at Johns Hopkins in Baltimore.

As was stated previously, Timmyís maladaptive behaviors exceeded

1000 per day when he entered Kennedy-Krieger. Through a functional analysis

of Timmyís problem behavior, it was determined that many of these behaviors

were not maintained by environmental variables, such as to get attention or to

gain access to preferred activities, but rather persisted independent of any social

consequence provided and appeared to serve a self-stimulatory function. Based

on these results, as well as other assessments, the treatment plan was developed

and some of the components included: Three-step guided compliance,

redirection, noncontingent reinforcement; high staff ratio; response reduction

procedure, which was a 30-second basket hold for SIBs, aggressions, and

disruptions; and other treatments. These recommendations did not evolve

overnight but were part or an intensive and extensive effort.

Timís behaviors, when he left Kennedy-Krieger, were reduced to a

little bit over 50 per day. While the situation had improved, a residential

placement was required for Timmy upon his discharge. His referral was sent to

over 30 programs throughout the United States, and Bancroft was the only

program that accepted the challenge of providing the measure of care and

attention required by our son.

We provide this history as a context to our opposition to this

measure. A small but essential portion of the protocols for Timmy requires the

implementation of a 30-second basket hold for behavior, which we have

outlined. It is not done solely for the purpose of physical restraint, but to

provide instruction and understanding to a child who, very often, lacks these

179

means. It is not administered in a punitive manner but to explain to Timmy the

type of act which is not acceptable.

ASSEMBLYMAN PAYNE: Ms. Higgins?

MS. HIGGINS: Yes.

ASSEMBLYMAN PAYNE: As you know, youíve gone past your

time. If you could just conclude it, and we appreciate it very much, in the

interest of others.

MS. HIGGINS: Okay. What is explicit for us is the fact that this

treatment does work. Itís effectiveness is demonstrated both in the decline of

these dangerous activities, as well as the fact that life with Timmy is now

bearable. He comes home every weekend, and we can now envision a future

with Timmy with a measure of promise, which we could not do previously.

ASSEMBLYMAN PAYNE: Thank you. Thank you very much.

Ms. Higgins, please, we have a question from Assemblyman Cryan.

ASSEMBLYMAN CRYAN: Ms. Higgins, whatís a basket hold?

MS. HIGGINS: Pardon me?

ASSEMBLYMAN CRYAN: Whatís a basket hold?

J I M H I G G I N S: A basket hold is essentially -- if you were to take your

hands and, essentially, extend them behind. In this manner, either the staff--

Iíll be the basket hold. (Couple demonstrate basket hold)

MS. HIGGINS: This is a basket hold.

ASSEMBLYMAN CRYAN: And in Timmyís case, a staffer does

that for 30 seconds. Is that how it works?

MS. HIGGINS: Yes.

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MR. HIGGINS: Yes. A staff trained in the techniques that were

developed at Hopkins. Both my wife and I were required to be trained in these

techniques before Timmy could be discharged.

ASSEMBLYMAN CRYAN: And were there any other types of

restraints used for the success that youíve seen with Timmy so far?

MS. HIGGINS: The only other type of-- Thatís the only restraint

that Timmy receives. They had dropped -- and when he arrived at Bancroft, the

restraint, for a time, was dropped out of his program because he had progressed,

and he had reduced his behaviors to such that he was having very, very minimal

ones. When they dropped the basket hold out of his program, his behaviors

escalated through the roof again.

ASSEMBLYMAN CRYAN: My last question is -- and this goes to

Assemblyman Thompson, Iím sure -- the Committee Substitute, are you

opposed to that or are you opposed to -- because your original testimony, Iím

sure, deals with the original A-2855?

MS. HIGGINS: Right. And we really have not had the

opportunity to read the substitute bill yet. So we are unsure of our commitment

towards that, or as to for or against.

ASSEMBLYMAN CRYAN: Thanks so much.

MS. HIGGINS: Youíre welcome.

ASSEMBLYMAN PAYNE: Assemblywoman Weinberg.

ASSEMBLYWOMAN WEINBERG: I just wanted to point out

what I pointed out through the course of the afternoon -- that the main

difference in the Committee Substitute is that it allows the use of restraints as

part of an IHP, along with the input that I enumerated earlier. So, under the

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Committee Substitute, restraints are allowed in an IHP in consultation with a

physician, parent, and the human rights advisory board.

MS. HIGGINS: Well, thatís where we currently are now, I believe.

MR. HIGGINS: Thank you.

MS. HIGGINS: Thank you.

ASSEMBLYWOMAN WEINBERG: Dr. Jeffrey Chapnick.

J E F F R E Y C H A P N I C K, M.D.: Good evening. My name is Dr.

Jeffrey Chapnick. Iím a parent of a student at Bancroft, and Iím also a

physician, so I bring a dual perspective to this. Once again, this is a picture of

my son, Billy, with his favorite pro-bowler, with whom he bowls in professional

amateur tournaments. (indicating picture) A short time ago, my son was in a

mental hospital for six months. So Bancroft has done wonders for him, using

what Iíd like to call the HEART tools -- Humane Effective Appropriate

Restraint Technique. It would be a shame if these were to go by the wayside

because of some -- it seems to be a wave of anti-restraint going on.

Bill A-2855 would be absolutely devastating to his quality of life.

He has managed, despite his disability, to do many, many things. Passing this

bill would hurt him terribly. It would effectively negate the efforts which have

been made to integrate the developmentally disabled into the community and

would take us back to the bad old days of Willowbrook, if everybody

remembers those.

Bill A-2855 would effectively eliminate the ability of programs like

Bancroft to provide their clients with anything remotely resembling a normal

existence. Children like my son would not be able to safely go on outings to the

community, to the supermarket. They would be reduced to an isolated,

vegetative existence. The procedures in Bill A-2855 are unworkable and would

182

have the net effect of squeezing the dignity and humanity out of the lives of our

children, forcing them again to be locked up behind closed doors out of sight

and out of mind.

If we allow the bill, A-2855, to take away these tools, our children

and those who care for them will be subjected to great danger. They will end up

bruised, broken, and bloodied, filling the ERs of New Jersey. They will populate

our trauma wards and ICUs. Without the ability or these tools, they will be

reduced to a hermetically sealed existence -- no movies, no bowling, nothing.

We strongly support continued training and staff development

programs for care providers, as it is quite vital that the State provide those who

work with our children the resources and the compensation that they require and

deserve. However, the draconian measures in A-2855 would be throwing out

the baby with the bath water.

The final point -- taking away these valuable tools from our

childrenís caregivers would be as foolish an act as prohibiting all surgeons in

New Jersey from ever using scalpels again, simply because of one operation not

having gone well. Overreaction is not the answer. Enlightenment, resources,

training, and hope are the keys to our future and our childrenís future.

ASSEMBLYMAN PAYNE: Thank you very much, doctor. Thank

you.

Lois Williams.

L O I S C. W I L L I A M S, ESQ.: Good evening. Iím glad to see you

stayed awake, and I have too.

ASSEMBLYMAN PAYNE: Thatís why we keep it cold in here.

MS. WILLIAMS: My name is Lois Williams. I am a retired

schoolteacher, and I am an attorney. Iím not here in that capacity.

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Iím here because I have an autistic son who is 43 years old. So I

think I can top anybody for time living with a person who can hurt you really

easily. I kept him at home until he was 35. My worst fears were that he would

have to go to an institution. I did every possible thing to keep him calm. He

went to day care, ARC. He would hurt the people at ARC. He would hurt the

people on the school bus. It was pretty much of a catastrophe, but I wouldnít

give in until one day I was sleeping and he came up and almost strangled me.

My grandson was there, got him off me, and I realized that it was an impossible

life.

When he went, first, to group home and he hurt someone very

badly there, they didnít have restraints or anything like that. The next group

home he went to -- they, also, didnít have restraints. It was a very nice home,

and I kept hoping, "I hope he doesnít hurt anybody." Well, he didnít hurt

anybody much at the home, but he hurt people at the day center. They were so

afraid of him that they wouldnít keep him there. Now, I could have brought

him today and illustrated that heís really tall and he weighs 200 pounds, and if

heís angry, heís going to scratch you or strangle you, but I thought that that was

kind of unnecessary. He finally had to go to Woodbine, where he had to stay

for quite a while.

And then, by some miracle, a letter was received from a company

named AdvoServ, and they said they would like to have him -- they thought,

because he was autistic. They read his records, and they thought they could

help him. Heís been at AdvoServ, I think, about three years. Heís not perfect

and heís not cured and heís never going to be cured. This is why I am here to

ask you to please keep the use of restraints in programs for the people that need

them.

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My son has always been a nightmare -- that someday he was going

to kill somebody. And if you donít even think of the people that heís hurting,

think of him. What will we do with him if he kills somebody? That was my

nightmare. What will we do with him? Well, if AdvoServ canít use restraints,

then whatís going to happen to Timmy? Because heís going to hurt somebody.

Thank you.

ASSEMBLYMAN PAYNE: Thank you very much.

Kathy Mills.

K A T H Y M I L L S: Good evening. My name is Kathy Mills, and I am here

representing New Jersey TASH and the Building Futures Project, which is New

Jerseyís project on positive behavior support. This project provides training and

technical assistance to families, schools, and agencies throughout the state.

Iím, also, a parent of a child with severe behavior challenges. My

little boy is only 8, and he has displayed many of the behaviors that youíve

already heard about today. I wonít go over them, because it will be repetitious.

Beginning at age 5, my sonís behavior became more and more challenging and

out of control. After a couple of years of crisis, I connected with a behavior

specialist from the State trained in positive behavior support. I attended

parentsí trainings and learned to apply support techniques and strategies over

the next year. When I realized how it changed our lives in a positive way, I

became involved in training other families.

Over the past two years, I, along with a parent/professional training

team, have been involved in training over 30 families who have children with

severe behavior challenges. We have worked with children with physical

aggression and self-injury with positive results. We have not had to resort to

any type of restraint or demeaning punitive techniques to achieve these results.

185

One question you may ask is: Why do we need to put these

protections in place? They need to be in place because most of the children we

are talking about cannot speak. They cannot go home or call mom and tell

them that something is wrong. These children do not need to be managed and

controlled. They need to be understood and supported. These are the most

vulnerable people in our society.

There is an alternative. We have the expertise in New Jersey to

begin to develop positive approaches for people with severe behavior challenges.

There are several universities in New Jersey with nationally known experts in

positive behavior support. We need to utilize these resources, now, and develop

our capacity to support people in positive ways.

Iíve worked, also, in an institution in Pennsylvania, 20 years ago,

and I restrained children in basket holds. And with what I know now, I could

have prevented all of those behaviors with the knowledge about positive

behavior support and what to look for -- behaviors that lead up to the outbursts.

Thank you.

ASSEMBLYMAN PAYNE: Yes. Can I ask you, you are in favor

of this A-2855?

MS. MILLS: Correct

ASSEMBLYMAN PAYNE: That removes restraints. That removes

the--

MS. MILLS: Excuse me? Iím in favor of Matthewís Law. Because

of the positive behavior support that weíre doing, a lot of people out there are

doing positive behavior -- theyíre calling it positive behavior support, but itís

not. Itís behavior management. It has nothing to do with positive behavior

support. We just want to see the work that weíre doing grow. All the parents

186

that we work with, theyíre still having major problems with their children in

schools, because nobody is trained. Weíre trying to get to people, but we do not

have the resources to do that.

ASSEMBLYMAN PAYNE: Thank you very much.

MS. MILLS: Youíre welcome. Thank you.

ASSEMBLYWOMAN WEINBERG: Rita Hegmann, parent. Not

here. She is here, Iím sorry.

R I T A H E G M A N N: My name is Rita Hegmann. I have a 23-year-old

daughter with developmental disabilities. This is her picture. (indicating

picture) Iím not in favor of A-2855, because my daughter has severe

self-injurious behaviors. If you were to see her arms, she has scars on her arms

that start here on her hand and go all the way up her arms, both on the outer

and inner surfaces. She bangs her head. She pulls out her hair. Iíve been

dealing with this for 23 years. I had her at home for 13 years, and then I had

her in a facility in New York. I lived in New York originally.

Sheís now at Bancroft NeuroHealth. She is in their specialized unit

there. I just donít feel-- They need these restraints, both to protect her-- I donít

know what the alternative is when you have a child whoís tearing out pieces of

their flesh or banging their head on any surface that they can get to. She also

functions at a very low level. I keep hearing about all of these positive

approaches. And Bancroft -- itís not as though they donít use positive

approaches, but restraints are used as the last measure for her.

Right now, she does have some coverings on her arms that weíve

been able to work with her to get her to protect herself. So she has some

coverings that do protect her arms, so that if she does have behaviors, she will

187

not be able to get to her arms, and then they donít have to restrain her. Then

they can just work with her the way it is.

So Iím not in favor of the law as itís written. Iíd like to be able to

read over the new amended law to see whether or not I would-- It seems like

thatís a compromise. I think it might need a little bit of work, but it certainly

seems like itís a compromise. Iím just asking you not to get rid of something

thatís helping these children, to just really examine whatís going on, to really

look at it closely. I feel very badly for this mom. I donít know what I would

feel like in her place. But I, also, know that I have to look after my daughterís

well-being, and, right now, she needs those restraints to protect her from herself

sometimes, unfortunately.

Thank you very much for allowing me to speak.

ASSEMBLYMAN PAYNE: Thank you very much.

Jane Gonzalez.

Good evening, Ms. Gonzalez.

J A N E G O N Z A L E Z: Good evening.

My name is Jane Gonzalez, and Iím coming at you from a little bit

different perspective. A lot of parents and folks who spoke here today were

from New Jersey. I am not. Iím from Pennsylvania.

My daughter, Rachel, is not autistic. She does not have PDD. She

is microcephalic. She has a nonspecific diagnosis. My daughter suffers from a

lack of myelin. Myelin is the white matter in the brain, which allows -- itís a

conduit for messages to be sent through the brain to the appropriate areas and,

effectively, helping her to function as a person. Because of the lack of this

myelin, Rachel has neurological outbursts -- is what I call them. These

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outbursts present themselves as behaviors, behaviors which are extremely

self-aggressive, abusive, and destructive.

Rachel was maintained at home for five years of her life. And in

those five years, we sought different programming for her. Her behaviors were

very clear to us at a very early age, and we tried all treatments that were

available to us in Pennsylvania. We tried redirection. We tried positive

reinforcement. We had a sensory program for her. You may hear the term

sensory integration, in which we utilized brushes and feathers and anything that

we could get our hands on, to desensitize her nervous system so that it could

handle the input that being alive asks it to do.

Rachel went through an early intervention program in Pennsylvania,

and because of their inability, because of the laws there, to keep her safe and,

effectively, by using a restraint when these outbursts occurred, I was frequently

called and asked to come take Rachel home, come to pick her up from this

program, because they could not keep her safe, nor the other staff persons or

students, at this facility, safe from Rachelís behavioral outbursts.

Rachel, also, spent time in the Biobehavioral Unit at Childrenís

Seashore House in Philadelphia. They, also, utilize redirection, and positive

reinforcers. They also incorporate it--

ASSEMBLYWOMAN WEINBERG: Ms. Gonzalez, youíre at the

end of your two minutes, so could you please summarize?

MS. GONZALEZ: Absolutely.

My daughter came out of the Biobehavior Unit in Pennsylvania

bald, and essentially was bald two other times at her own hands, because

Pennsylvania does have a law like A-2855, and disallowed for the appropriate,

effective humane treatment that she now receives. Rachel has gone into the

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Lindenís Program at Bancroft NeuroHealth with behaviors far exceeding 80

incidences per hour. Rachel came out of that program with a basket hold, visual

screen. The visual screen has since been dropped. Rachelís behaviors continue,

to this day, to decline. She does still receive a basket hold for self-injurious

behaviors. And when this basket hold and this treatment is not utilized, her

behaviors escalate quickly, in which she hurts herself severely. Without these

options and treatment, Rachelís life would be one crisis after another.

Her body cannot handle the stimulation that is being asked her

neurological system to handle. She needs this hug of life to maintain her ability

to function in a community. And I ask you, and I do support your efforts today

in the combined bill. I do support that, and I think it is a step in the right

direction. And I thank you for all staying here and giving opportunity for me

to speak to you this evening.

ASSEMBLYWOMAN WEINBERG: Thank you.

MS. GONZALEZ: Thank you.

ASSEMBLYWOMAN WEINBERG: Are there any questions? (no

response)

Thank you very much, Ms. Gonzalez.

Joe and Laura Atkinson. Are they here? (no response)

Yes, we do have their written testimony. Joseph and Laura

Atkinson did submit written testimony in opposition to A-2855.

Richard Tallman, who wants to speak in favor of A-2855.

R I C H A R D T A L L M A N: Good evening. My name is Richard

Tallman.

ASSEMBLYWOMAN WEINBERG: Put your microphone on.

(referring to PA microphone)

190

MR. TALLMAN: Okay. Now itís on.

My name is Richard Tallman. Iím the father of an autistic

26-year-old young man, who happens to be sitting in the corner here. You

havenít heard too much out of him this afternoon. Ten or 15 years ago, you

would have. He displayed a lot of the behaviors that people have been

describing. However, he attended a program that did not use restraints or

aversive techniques, and he seems to have done pretty well by it.

In 1993, our youngest son, Jason, was placed in a residential

treatment facility in Pennsylvania, on May 11. On May 12, we got a phone call

that they had a problem with him, restrained him, and he had passed out. They

took him to the hospital. When I called the hospital, they said, "He hadnít

passed out. He stopped breathing." They had squeezed the life out of him, and

he died the next day in Childrenís Hospital in Philadelphia. At the time, we

thought it was an isolated situation, until I read the article in The Hartford

Courant several years later.

Shortly after that came out, another child who lived about 20 miles

from us died at the same place in Pennsylvania. So I moderate a list to

everyone on the Internet dealing with restraint issues, and Iíve documented over

200 cases of this happening. There are programs out there that donít use

restraints. Thereís one in Massachusetts thatís semi-world famous, I would

imagine -- donít use any restraints, but they have a great success rate. If you say

use restraints -- if the only tool in your toolbox is a hammer, youíre going to

treat every situation like itís a nail.

In conclusion -- Iím going to make it short -- because Iím getting

hungry, too. I see a lot of people have been showing pictures. I canít do that.

191

Janice canít do that. Because the last pictures of our kids were taken by medical

examiners.

Thank you.

ASSEMBLYWOMAN WEINBERG: Thank you very much.

Any questions? (no response)

Okay.

ASSEMBLYMAN PAYNE: Peggy Kinsell, please. (no response)

Gone. She was going to speak in favor of A-2855.

Gerard Thiers. (no response) Gone. Was speaking in favor of

A-2849 and A-2850.

Chris Martin Clee. (no response) Sheís gone. She was speaking

in favor of Matthewís Law.

Lowell Arye. (no response) In favor of A-2849 and A-2850.

Dr. David Holmes. (applause)

ASSEMBLYWOMAN WEINBERG: You bring your own cheering

section. (laughter)

D A V I D L. H O L M E S, Ed.D.: Thatís nice to hear.

Hi. Itís nice to be here. Itís late. Iím very pleased to be able to

present my presentation to you. Iím not going to actually read it, because of the

lateness of the evening. Let me tell you who I am. Iím the Panel of Professional

Advisorsí Chair for the Autism Society of America, which is the largest advocacy

organization for parents and children with autism in the world. Iíve been the

Chair of this Panel of Professional Advisors for six years, which is five years

more than the average panel of the -- Chair of the Panel of Professional

Advisors, because the Autism Society of America gives me the sense that Iím a

192

balanced professional in my views of whatís appropriate and whatís

inappropriate for services.

Iím also a forensic psychologist, board certified, and Iíve been

involved in many cases of child abuse, neglect, as well as wrongful death cases.

Iím also an adjunct professor at Princeton, in the Psychology Department. But

my day job is, Iím President and Executive Director of The Eden Institute in

Princeton. This organization offers life-span services to those with autism. Not

just anyone with autism, but those of more significant behavioral and cognitive

challenges.

A recent position I had was on past -- and itís really nice to be past

something -- chairman of the Chamber of Commerce of Princeton regional area.

Now people would say, "Well, whatís that all about?" I was actually sought

out by the Chamber to be chair. Because I run a not-for-profit organization?

No. Because they were so impressed with the quality of services that Eden

offers some of New Jerseyís most challenged human beings, and they see these

folks with autism living and recreating throughout the community. And they

know that, for example, this coming Sunday, weíre taking over the Trenton

Soup Kitchen -- people with autism -- serving those who are homeless and in

need, because thatís what Eden is all about.

Itís interesting when I hear such passion from such opposite poles

on an issue. When I hear such passion, I can see why we have individualized

educational plans and individualized habilitation plans. Because when you

have individualized plans, you have input from all stakeholders -- mommies,

daddies, professionals that are serving these young people on a regular basis.

Also, if family choice -- which I think is an issue in this matter as well -- in

America was not an issue, I think weíd all be driving black Fords right now. So

193

you can see that Americans like to have options and they like to have choices

when it comes to the services for their children.

Much of the testimony in favor of A-2855 this morning and

afternoon sounds an awful lot to me, from my experience, as like abuse and

neglect, not like effective treatment. I want us to keep that separate. I think the

doctor was very clear. If we stopped all surgeries because somebody got stabbed

in the stomach on Main Street, because a knife was used, that would be an

abomination of what effective surgery is all about.

We all know the reasoning, faulty as it is, behind why a handful of

professional advocates want to cease effective treatment of our most vulnerable

of citizens. But until alternate procedures can be documented and proven

beyond ideological belief systems, we must treat our children and adults with

the dignity due them. That is, to give them the necessary treatment to live

quality lives free of life-threatening behavior. For to do less would be the

ultimate form of inhumanity, allowing people to live a life of despair and

isolation.

Iíve been doing this, ladies and gentlemen, for all of my

professional career, for 30 years. Iím only one of two service providers here this

afternoon -- people who have dedicated our lives for 24 hours a day of services.

Right now, Iíve got services happening, right now, for New Jerseyís vulnerable

citizens. And by the way, I am a citizen of New Jersey. Iím a taxpayer in New

Jersey. Iím not from Wisconsin. Iím not from Nevada. Iím not from

Pennsylvania. These are not bastions of appropriate services for people of

autism.

New Jersey is known internationally for that. There is an article

that just came out in New Jersey Monthly--

194

ASSEMBLYWOMAN WEINBERG: Doctor, youíre getting to the

end of your time.

DR. HOLMES: Right at the end.

--called "End of the Light." New Jerseyís superior schools for the

autistic have prompted a migration of families seeking a brighter future for their

children. I didnít hear a lot of that today, and itís true. Iím very much opposed

to A-2855. It will scuttle some of the very high quality service that we have in

this state. Iím very much in support of A-2849 and its companion bill, A-2850.

I have not read the recent one where you brought these two bills together --

supposedly A-2855 and A-2850 together. But if A-2850 included the same

controls for aversives that you have included for restraints, I would be in

support of that. Iíd be in support of that.

Youíve heard from some of our families. We fully involve families

in every treatment that we offer. Because if you donít have family support or

support from the community at large, you canít be effective with these kinds of

folks.

Thank you.

ASSEMBLYMAN CONAWAY: Thank you.

ASSEMBLYMAN PAYNE: Thank you, Doctor.

ASSEMBLYWOMAN WEINBERG: Any questions? (no response)

Thank you.

ASSEMBLYMAN CONAWAY: Iíve been to his place.

ASSEMBLYWOMAN WEINBERG: And just to correct the record,

we did have several service providers here today.

DR. HOLMES: Okay. I only heard one other.

195

ASSEMBLYWOMAN WEINBERG: You might not recognize some

from other parts of the state, but they were actually here.

Robin Turner.

R O B I N T U R N E R: Good evening. My name is Robin Turner. Iím

Danielle Gruskowskiís aunt and co-guardian with my sister, Diane Gruskowski.

Danielle was nonverbal. I wish Danielle could speak, and I wish

she was alive, because I would have her here today talking to you and telling

you about the abuse and neglect that she received at Spectrum For Living facility

in Edison. I fully support Matthewís Law, due to the fact that it specifically

states and it deals with aversive treatment, and it also is for abuse and neglect.

Actually, Iím sorry, I forgot to hand these out. Iím sorry. (referring

to copies of testimony)

My first page is all the situations that happened to Danielle that are

documented. Theyíre actually documented. And facilities like this are able to

get away with it.

I wanted to address Assemblyman Cryan regarding the IHP. The

IHP was never followed, ever. It was only until we contacted the State and the

State started contacting the provider agency, is when we were getting, maybe,

them to even take it out of her file. It was never, never addressed.

From my point of view, and Danielleís point of view, she was not

protected. When you are considering these bills, I would like you to really think

about Danielle and all the things that she went through that youíre going to read

about. I also enclosed a picture in there of when she was impacted. It just goes

on and on and on, and this is not a life for any child, your child, a normal child,

or any kind of child.

196

I can only hope that you make all the right decisions for us. We

need them fast, because there are many more Danielles out there, and I donít

want to lose any more of them. Theyíre too precious to me.

Thank you very much.

ASSEMBLYWOMAN CRUZ-PEREZ: I have a question.

ASSEMBLYWOMAN WEINBERG: Yes.

Nilsa.

ASSEMBLYWOMAN CRUZ-PEREZ: Robin, is that your name,

Robin?

MS. TURNER: Yes.

ASSEMBLYWOMAN CRUZ-PEREZ: Okay. What happened to

her in the picture?

MS. TURNER: That was our Christmas present -- December 24,

Christmas Eve, 2000. That was the Christmas present that the facility gave to

our family. She was -- a hot cup of tea was thrown in her face by the caregiver.

ASSEMBLYMAN PAYNE: What facility was this?

MS. TURNER: The Spectrum For Living in Edison, New Jersey.

ASSEMBLYMAN CRYAN: Anybody charged?

MS. TURNER: There is a lawsuit going on at the moment. We are

also waiting for the autopsy from Danielleís death, because of the fact of the

way it happened -- 911 was not called.

ASSEMBLYWOMAN CRUZ-PEREZ: Iím very sorry.

Thank you.

MS. TURNER: Thank you. Thank you very much.

ASSEMBLYMAN PAYNE: Robert Stack. (no response) Robert

Stack was in favor of A-2849. Thatís the substitute.

197

Tish Capawana.

UNIDENTIFIED SPEAKER FROM AUDIENCE: She already

testified.

ASSEMBLYMAN PAYNE: Oh, all right. She was in favor of

A-2849.

Joe Young.

Identify yourself, please, Mr. Young.

J O S E P H Y O U N G, ESQ.: Good evening. My name is Joe Young. Iím

Deputy Director of New Jersey Protection and Advocacy. The New Jersey

Protection and Advocacy is the State-designated protection and advocacy

system for persons with disabilities. Iíve submitted written testimony prior to

the hearing starting.

And just to respond to the Chairwomanís request, I wonít read the

testimony. At this point, as currently written, NJP&A supports the A-2855 over

the Committee Substitute for the following reasons: The Committee Substitute,

basically, only will legislate the current status quo. The things that are in the

bill are actually what should be going on now, but are not going on. New Jersey

Protection and Advocacy has responsibility for monitoring a great deal of whatís

going on in the developmental centers. When New Lisbon was under review, we

were on the ground at New Lisbon every day for four months.

We read many, many IHPs at the developmental centers. The

plans, the IHPs, are not individualized. Restraints are not provided for persons

on exception basis. They are provided more on a routine basis. But even then,

whatís written in the plans are not followed. We read plan after plan after plan,

which says: redirection, in order to try to get them to do something else; remove

them from the stimulating environment; and then restraints. On plan after plan

198

after plan. Thereís no effort to do everything that weíve heard here, before,

about look what the causes are and things like that.

Weíre part of the Federal DD network, along with Dr. Spitalnikís

UCE. Weíd like to adopt a great deal of what she said. Weíre recommending,

in fact, that the request that she had, that there be assessments prior to any kind

of restraints being enforced, that there be stricter oversight. We donít think that

the current human rights committees are empowered. We donít think that

theyíre getting adequate training.

Currently, the IDT, again, rubber stamps. You also have to

remember that a lot of people do not have parents, and the State is the guardian.

For 4,000 people with developmental disabilities, the Division of

Developmental Disabilities is also the guardian.

The other thing which hasnít been discussed today, which is one of

the other bills that we encourage, is open reporting. The fact that restraints are

being used should be open to the public of New Jersey so that everyone knows

what is happening in these facilities. (applause)

ASSEMBLYWOMAN WEINBERG: That is in the Committee

Substitute.

MR. YOUNG: Okay, thank you.

ASSEMBLYMAN PAYNE: Thank you very much.

ASSEMBLYWOMAN WEINBERG: Before you leave, can I just

ask you a question.

MR. YOUNG: Certainly.

ASSEMBLYWOMAN WEINBERG: You are the State-designated

Protection Advocacy Group?

199

MR. YOUNG: Itís a Federal legislation that was passed as part of

Willowbrook. And we were designated by-- Our agency is actually the

privatized public advocate. As part of that, we were designated as the State

Protection and Advocacy system, under Federal statute.

ASSEMBLYWOMAN WEINBERG: Without going into any

specific cases, but the kinds of cases that weíve heard about earlier, or during the

course of this very long day, are those cases that were brought to your attention?

MR. YOUNG: We heard about most -- after the fact, after the

injury had already occurred.

ASSEMBLYWOMAN WEINBERG: And then if you hear about

them after the injury occurs, what do you do?

MR. YOUNG: We monitor the Stateís response to that. We make

sure that the State conducts an investigation, that their investigation is thorough

and that the agencies and the State respond to those concerns.

ASSEMBLYWOMAN WEINBERG: Well, Iím very happy to know

about you, about the privatized advocacy group. Because having been through

a situation that brought some of us here, I never heard you or saw you in that.

So weíd be very happy-- We have the Chair of the Family, Women, and

Childrenís Services Committee and the Chair of the Regulatory Oversight Board,

and I, as the Chair of Health and Human Services, would be very happy to

know what your work is about -- certainly not here, right now -- and exactly

who and how you advocate.

Thank you.

MR. YOUNG: Certainly. Weíll be in touch.

ASSEMBLYMAN PAYNE: And how you interact with the State

agency. I mean, the State -- theyíre supposed to be regulating some of these

200

agencies, and weíve had recent experiences where thereís some 40, 50 violations,

etc., etc., etc. I want to know what you people were involved in, at all, or if you

had any oversight or any involvement. Very silent on it. We havenít heard any

at all about that.

MR. YOUNG: Weíll be in touch.

ASSEMBLYMAN PAYNE: Judith Farell. (no response)

Sandra Boyles spoke already, right?

ASSEMBLYWOMAN WEINBERG: Yes.

And finally, Monica Brown, the last person who I have listed here.

(no response) Sheís not here.

All right. Well, that concludes our testimony for those who have

registered to testify.

Yes, Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: I just wanted to make a

comment before we get to the vote.

Thus, certainly, what we know of what happened to Matthew was

horrible, and it cries out for action. At the same time, weíve also heard from

many parents here who feel that having access to restraints is almost absolutely

necessary in order to achieve whatís necessary for their children.

I think that the Committee Substitute bill addresses this, plus it

takes action to minimize chances that what happened to Matthew could happen

to another child, and it has quite a few protections in there. And at the same

time, it does permit, under controlled circumstances, the use of restraints. So

I will be supporting the bill.

ASSEMBLYMAN PAYNE: Thank you, Assemblyman.

Anyone else? (no response)

201

ASSEMBLYMAN CONAWAY: Do you want a motion?

ASSEMBLYWOMAN WEINBERG: Before you do--

First of all, I would like to thank the real heros in our society. And

itís not only those people who, on a daily basis, care for the kinds of folks that

weíve been talking about all day, but certainly the parents and guardians who

love these people, who advocate for them, who give their hearts and souls to

this. And youíve done that to this endeavor.

Many of us, up here, have gotten the chance to know many of you

over the last few months and have learned a great deal about this issue. Youíve

been in our offices. Weíve been on the phone. Weíve been in e-mail contact.

I will tell you that I have the utmost of admiration for the things that you all do

in your daily lives, and for your ability to continue loving your relatives and

doing the things that you know, because youíre really in the best position most

of the time.

I know my professional colleague here, to the right, will not always

agree with me, but I believe the parent usually knows best, even without the

degree.

ASSEMBLYMAN CONAWAY: I disagree with that. (laughter)

ASSEMBLYWOMAN WEINBERG: Having said that, I also

believe that the Committee Substitute worked very hard at addressing all of the

issues that were brought before us today and in the prior weeks and months that

weíve heard about this. And again, the Committee Substitute does permit use

of restraints in an IHP, but only with these new county-based human rights

committees, which cannot contain anybody who represents the facility thatís

being -- where the IHP is emanating from. It has to contain a mix of advocates,

as well as professionals, and we believe that it goes a long way to answering

202

some of the problems that were brought up here today. Reporting requirements

are involved in the Committee Substitute. We think that is very important.

These will be published.

So just like -- I have a 97-year-old aunt in a nursing home. I can

look on a Web page put out by the Federal government for Medicare and

compare the problems in her nursing home, as opposed to any other nursing

home in our vicinity. And that Web page is programmed into my computer.

And as often as I visit, I also look at that, often. So that everybody whoís

involved in this issue will have a chance to look at the numbers, how restraints

are being applied in the State of New Jersey.

I think weíve done the best we possibly can. And if we release the

Committee Substitute today -- tonight, I should say -- it will be done with an

idea that we will, again, be taking a look at this before it comes up for a final

vote. Certainly, on behalf of the two Committees involved, as well as

Assemblywoman Previte and our Family, Women and Childrenís Services

Committee, we will look at that bill, again, very carefully. We will take more

input and speak to more of you, and we will have further time to amend this,

if all of us agree it can be amended at the floor level before it goes before the

entire Assembly.

I, for myself, I must say, I think we did the best work we can

possibly do. I would hope that Janice Roach is going to agree that whatever the

final version that comes out of this Committee and out of the full Legislature

can be known as Matthewís Law, and that this, too, will be known as

Matthewís Law. Because it is really the advocacy that you brought forth that

started us on this road.

So thatís all I have to say.

203

ASSEMBLYMAN PAYNE: I would, also, like to say that I have

the greatest admiration for the advocates, for the parents, the relatives of people

who are clients or who happen to be in this situation. I have to say that thereís

passion on both sides, and we saw that today. We saw people that were very

passionate about the use of restraints and about the non-use of restraints. I

think one of the things I have to give a great deal of credit to, for the parents

and for the advocates, is that you are relentless, and you should be, and that

you have, obviously-- Many times youíre talking to the choir, because we are

also deeply concerned about the conditions that exist here in our society and our

community.

When we were elected, I certainly see my role as one whose

responsibility is to try to improve the quality of life of people, to speak for those

who have no voice. I feel that, obviously, itís a God-given opportunity to have

that opportunity to be able to try to bring about some of the improvements in

our society thatís so sorely needed. Many of us have relatives who, also, are in

the same situation or have been. So, therefore, we are able to be empathetic to

what weíre talking about. But itís obvious that there is passion on both sides.

But I have to say, I commend all of those who came today, because

there was more light than heat. There could have been a great deal of heat and

no light, but I think that we were able to get light from each person that

testified. And as Chairwoman Weinberg says, that we will continue to look at

this to try to see to it that we address those kinds of concerns that have been

brought to us in the past, and Iím sure in the future.

Also, you can rest assure that we will see to it or try to monitor the

implementation of these regulations, to see to it that not only are they written

204

in pen and ink, but, also, that they are implemented, to see to it that what we

see is best for our citizens are implemented and carried out in the manner which

they should be. So you can be sure that we are committed to doing the very best

that we can. And hopefully, we will be able to have a piece of legislation that

you will be honored to have called Matthewís Law.

Thank you very much.

Doctor-- Assemblyman, Iím going to refer to you again as

Assemblyman Conaway. The hearing is over, Doctor.

ASSEMBLYMAN CONAWAY: Well, I just wanted to take a

moment to thank all those who have come to testify. Itís been a very long day,

and your input has been invaluable.

I want to congratulate and thank my colleagues for responding

when this issue was brought forward -- the Chairpersons, Assemblywoman

Previte, Assemblyman Munoz -- for your advocacy on this issue. As we move

forward, I hope that all will recognize that this is a work in progress; that weíll

recognize that very often in life the truth of what needs to be done sometimes

lies along a middle way and not on one end or another; that we recognize the

difficulties that people who work in various institutions, the difficulties in which

they find themselves, or, often, they donít have all the resources they need to do

the job that they would like to do; that we recognize that the professionals --

who are involved with these children, dedicate their lives to their service and

their betterment -- are doing the best that they can with their situation.

So, Iím hopeful that at the end of the day we will, and that when

we get to this legislative process that we will bring forth the kind of reform that

serves everyoneís interests.

ASSEMBLYMAN PAYNE: Thank you, Assemblyman.

205

Assemblywoman Mary Previte.

A S S E M B L Y W O M A N M A R Y T. P R E V I T E: My name is

Assemblywoman Mary Previte. I chair the Family, Women and Childrenís

Services. I am just beyond speech to express my thanks to Assemblyman Payne

and Assemblywoman Weinberg and all the people -- Meredith Schalick, our

staff person, who have really orchestrated this extraordinary view of democracy.

I mean, look at what we have seen here. Weíve been going for seven hours with

the tiniest little break, with Democrats and Republicans and parents and

disabled people and educators and -- I canít even think of all the people -- to

come to what is best for what we believe are the vulnerable children of New

Jersey.

I would, personally, like to thank our two chair people that have

directed this.

And, Meredith, thank you so much.

I will go home and think long about this amazing demonstration

of democracy, of how we come to what we believe is the best for our people.

I thank you most profoundly.

ASSEMBLYMAN PAYNE: Thank you.

ASSEMBLYWOMAN WEINBERG: On the Committee Substitute,

we will vote separately as two separate Committees. So the Health Committee,

can I have a motion on the Committee Substitute?

ASSEMBLYMAN CONAWAY: I move the Committee Substitute

as amended. I move the Committee Substitute.

ASSEMBLYWOMAN WEINBERG: Second.

ASSEMBLYWOMAN POU: Second, yes.

206

ASSEMBLYWOMAN WEINBERG: Assemblyman Munozís bill

is joined in this, and he will be joined as a co-prime sponsor of this, also.

Can we have a roll call on the Committee Substitute?

MR. PRICE: On the Committee Substitute, for A-2849 and

A-2855, Assemblywomen Vandervalk and Quigley are recorded as abstaining,

and Assemblymen Green and Johnson are recorded in the affirmative.

Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: Yes.

MR. PRICE: Assemblywoman Pou.

ASSEMBLYWOMAN POU: Yes.

MR. PRICE: Assemblyman Conaway.

ASSEMBLYMAN CONAWAY: Yes.

MR. PRICE: Assemblywoman Weinberg.

ASSEMBLYWOMAN WEINBERG: Yes.

MR. PRICE: The substitute is reported.

ASSEMBLYMAN PAYNE: Now, Iíd like to have a motion to

move the substitute.

ASSEMBLYWOMAN CRUZ-PEREZ: I make the motion to move

the substitution.

MR. VARI: Is there a second? (no response)

On Committee Substitute, Assembly A-2849 and A-2855,

Assemblyman Rooney voted in the negative.

Assemblyman Cruz-Perez.

ASSEMBLYWOMAN CRUZ-PEREZ: Yes.

MR. VARI: Vice-Chairman Cryan.

ASSEMBLYMAN CRYAN: Yes.

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MR. VARI: Chairman Payne.

ASSEMBLYMAN PAYNE: Yes.

MR. VARI: The substitute carries and is released.

ASSEMBLYWOMAN WEINBERG: Thank you very much.

We have one more bill to consider today, or tonight again, is-- I

explained earlier. Weíre going to be holding the training bill until we get all the

funding mechanism worked out.

But the last bill that we have to consider is Assembly Bill No. 3108,

which requires the Department of Human Services to place persons as monitors

in facilities for developmentally disabled under certain circumstances. We do

have amendments for that bill. Iím going to ask David Price from OLS to go

over what those amendments are. But I will tell you that I think this is as

important to address some of the other issues that were talked about earlier

today. That because there are appeal processes, lawful appeal processes, that

when the Commissioner of Human Services feels certain circumstances are

warranted, she will be able to place a monitor in any facility, any time, up to

whatever she deems appropriate, whether itís seven days a week, 24 hours a day,

or less, depending upon the circumstances.

So, David, if you would go over the amendments on that.

MR. PRICE: The proposed Committee amendments to A-3108 are

as follows: The amendments would stipulate that the Commissioner of Human

Services may place monitors at a facility for persons with developmentally

disabilities, if the Commissioner "reasonably believes," rather than has reason

to believe, that the facility may be in violation of any Federal or State law

regulation that impacts on the safety of a person receiving services from the

Division of Developmental Disabilities. In addition, the amendments would

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clarify that the Commissioner of Human Services may place monitors at a

facility for persons with developmental disabilities up to 24 hours a day, seven

days a week. The amendments would substitute the term "personal control" for

physical restraint wherever it appears in the bill. And finally, the amendments

revise the definition of mechanical restraint to exclude the use of a bedside rail

and to clarify that the use of a domed or enclosed crib is prohibited.

ASSEMBLYMAN CONAWAY: I move the bill.

ASSEMBLYWOMAN POU: Second.

ASSEMBLYWOMAN WEINBERG: Roll call.

ASSEMBLYMAN CONAWAY: As amended, I should say.

ASSEMBLYWOMAN WEINBERG: Yes, move as amended.

MR. PRICE: On A-3108, as amended, Assemblywoman

Vandervalk and Assemblymen Green and Johnson are recorded in the

affirmative, and Assemblywoman Quigley is recorded in the negative.

Assemblyman Thompson.

ASSEMBLYMAN THOMPSON: Yes.

MR. PRICE: Assemblywoman Pou.

ASSEMBLYWOMAN POU: Yes.

MR. PRICE: Assemblyman Conaway.

ASSEMBLYMAN CONAWAY: Yes.

MR. PRICE: Assemblywoman Weinberg.

ASSEMBLYWOMAN WEINBERG: Yes.

MR. PRICE: The bill is reported.

ASSEMBLYMAN PAYNE: Iíll entertain a motion to adopt, as

amended.

ASSEMBLYWOMAN CRUZ-PEREZ: As amended.

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ASSEMBLYMAN CRYAN: Second.

MR. VARI: Roll call vote on Assembly Bill No. 3108, as amended.

Assemblyman Rooney was recorded in the negative.

Assemblywoman Cruz-Perez.

ASSEMBLYWOMAN CRUZ-PEREZ: Yes.

MR. VARI: Vice-Chairman Cryan.

ASSEMBLYMAN CRYAN: Yes.

MR. VARI: Chairman Payne.

ASSEMBLYMAN PAYNE: Yes.

MR. VARI: The motion carries. The bill is released.

ASSEMBLYWOMAN WEINBERG: That does conclude the

business for today, but Iíd like to take a moment to thank not only the

Committee members for staying and listening and the joint effort that this

resulted in, but to thank our staff members -- Wali, Meredith, the OLS staff, the

partisan staff, and OLS who enables us to get a record of this today. So thank

you one and all.

(MEETING CONCLUDED)