Council Meeting



"Testimony concerning health care and caregiving for the elderly"

LOCATION: Old Bridge Municipal Building

Old Bridge, New Jersey

DATE: May 17, 1999

6:00 p.m.


Assemblywoman Carol J. Murphy, Chair

Senator Norman M. Robertson

Assemblyman Samuel D. Thompson

Assemblyman Louis A. Romano

Ruth M. Reader

Roberto Muniz

Joanne P. Robinson

Bernice B. Shepard


Irene M. McCarthy

Office of Legislative Services

Council Aide

Nancy A. Piwowar

Private Citizen 5

John Wanat

Executive Director

Monmouth County Office on Aging 22

Alma Strack

Assistant Director

Monmouth County Office on Aging 28

Ann M. Koehler


Pleasant Valley Adult Day Care Center

Spotswood 31

Lowell Arye

Executive Director

Alliance for the Betterment of Citizens

with Disabilities 40

Margaret Chester

Executive Director

Middlesex County Office on Aging 48

Paul Mullin


Legal Services Corporation 53

Ellen Nathanson

Assistant Executive Director

Jewish Family and Vocational Services

of Middlesex County 57

Helen Rende


Old Bridge Senior Center 59


"Presentation on Eldercare"

submitted by

Ann M. Koehler 1x

Statement plus "ABCD Synthesis Policy:

Cerebral Palsy and the Aging Process"

submitted by

Lowell Arye 2x


submitted by

Margaret Chester 12x


submitted by

Ellen Nathanson 22x

"Focus on Where to Provide Boomer Service"

plus attachment

submitted by

Helen Rende 24x

lmb: 1-62

ASSEMBLYWOMAN CAROL J. MURPHY (Chair): Ladies and gentlemen, I think we're going to call the meeting to order.

It's very nice to be here in the township of Old Bridge. My name is Carol Murphy. I'm Assemblywoman from the 26th District in Morris County, and I am chairing this Council for the Governor and for the benefit of the people in the State of New Jersey.

I'm going to turn the meeting over to our host this evening, Assemblyman Sam Thompson.


ASSEMBLYMAN THOMPSON: Thank you, Assemblywoman.

I want to thank you all for coming out tonight. Again we were charged by statute to look into the needs not only of our elderly today, but what our elderly needs are going to be 25 years from today.

Assemblywoman Murphy has put it very successfully in the past. She stated that this is not merely about them. This is about us because we're all going to be there at one point in time. So we have held hearings throughout the state as far north as Newark, as far south as Vineland. We have conducted quite a few hearings and have been looking into all facets of the needs of the elderly, not only the elderly, but the caregivers for the elder. Thus, you have individuals responsible for raising their own children and also caring for elderly parents.

So tonight we had hoped to hear from some of the baby boomers as to what they see their needs are going to be as they reach that age and anyone else that would be welcome to present testimony on any matters related to elder care.

Thank you.

ASSEMBLYWOMAN MURPHY: Thank you very much, Sam. And, again, thank you so much for making this evening possible and for us to be there.

I'm going to ask the members around the table to self-introduce, so you'll have a chance of hearing who will be speaking to you.

We'll begin with you, Senator.

SENATOR ROBERTSON: Yes. I'm Senator Norman Robertson. I represent parts of Passaic County and a couple of towns in Essex County.

ASSISTANT COMMISSIONER READER: Good evening. I'm Ruth Reader, Assistant Commissioner, Department of Health and Senior Services, the Division of Senior Affairs.

ASSEMBLYMAN ROMANO: I'm Assemblyman Lou Romano. I'm from Hudson County. You must have heard of that county. I enjoy myself here because we are a mixed group of Republicans and Democrats, but when it comes to this sort of Council, I have to tell you something. There is no politics, and I'm only too happy to be here with you.


And you know Sam and myself.


MR. MUNIZ: I'm Roberto Muniz, and I'm the President of the American College of Health Administrators for the New Jersey Chapter. I'm also a member on the Commission on Aging for New Jersey, and I'm the President for Parker Nursing Homes in Piscataway and in New Brunswick.


MR. MUNIZ: It's nice to be here.

MS. ROBINSON: And I'm Joanne Robinson. I'm an Assistant Professor of Nursing at Rutgers University, and I represent the New Jersey State Nurses Association.

ASSEMBLYWOMAN MURPHY: Okay. We have our staff from the Office of Legislative Services of the State of New Jersey who will be transcribing what is said here this evening. That's what these microphones are. They're not microphones for projection of our voices. They're microphones to put on tape everything that we say. So this meeting will be transcribed, and transcripts will be made available as they are completed. We've had a lot of meetings, so we've given a great deal of work to the Office of Legislative Services.

ASSEMBLYMAN ROMANO: I have to interrupt you.

I was looking at his face, and I was saying, but what is he doing here if that's him? That's former Mayor Dennis Collins from Bayonne, and he's a very good friend of Joe Doria's -- Mayor Doria.

ASSEMBLYWOMAN MURPHY: Well, it's nice to have you here.

MR. COLLINS: (speaking from audience) That's right. Thanks very much. One of the reasons for the visit is because of Mayor Doria and his friendship with Assemblyman Thompson who was very helpful, as you know, Assemblyman, when the Vince Cashiano (phonetic spelling) Bridge was named as a memorial to him. He has asked that we attend because he has the same interest as everyone here in the room.

ASSEMBLYWOMAN MURPHY: Well, that's wonderful.

MR. COLLINS: So thanks very much for the intro.


And we've been joined by another member.

Bernice, would you introduce yourself?

MS. SHEPARD: Good evening. My name is Bernice Shepard. I'm a member of this Advisory Council.


We will be taking testimony from people who have preregistered first. If we have time, we will hear from others if they request that time later on. We will be closing the hearing probably between 7:30 and 7:45 because we need to make arrangements for our next meeting, which we will be doing here, and a lot of the members, like Lou who comes from as you have heard Hudson County and myself up in Morris, we have a fair drive ahead of us, as do others of our members. Senator Robertson comes from Passaic County. So there is that to remember as we go along.

Nancy Piwowar.

ASSEMBLYMAN THOMPSON: One additional introduction for those who may not know. I'd like to introduce Helen Rende, who is responsible for this center here and is hosting us tonight.

ASSEMBLYWOMAN MURPHY: Thank you very much, Helen. We appreciate the hospitality. It's a lovely place to be. Thank you. (Ms. Rende accepts acknowledgment from audience)

Thank you.

The first speaker this evening is a woman named Nancy Piwowar.

Nancy, I hope I've pronounced your name properly. Nancy is a caregiver, and she needs to return to her family member, so she will be speaking to us first.

N A N C Y A. P I W O W A R: Thank you. I appreciate the opportunity to go first. I saw the advertisement in the Star-Ledger yesterday, and I immediately called up today, and thankfully, I was off from work, so I could get here at this time. I submitted a copy of my testimony. I'll read it. It's four pages, but I think I can go through it pretty fast.

What baby boomers think they will need for support and services when they are ready to retire?

My name is Nancy Piwowar, and I reside in Plainfield. I am here because I am actively involved in my mother's elder care, and I have been for a number of years. My mother's care has opened my eyes to what is needed, what's works, what doesn't work, and what frustrates caregivers and the elderly.

Two thoughts that I want you to remember are dignity and remember the elderly. We do not know how to properly care for the elderly. We think we do, but we really don't have great elder care because many of the elderly are forgotten and just left to fend for themselves until such time that there is a crisis, and then the Band-aid approach takes over. It is crisis management and learn-as-you-go process and not excellent care at the end of life.

I have my mother in a nursing home considered one of the best in the state. However, even with the seemingly good aspects of this home, I go there every night after working all day. And when I am not there, my family provides an aide/companion for my mother because she cannot help herself at all. My mother is one of the lucky ones, but she doesn't even realize it, but I am honoring my father by providing for her like he did during his lifetime. My father saved and saved and saved. He was a modest man but fair and thrifty, and if it wasn't for his wisdom and the values that both of my parents instilled in their children, my mother would have been on Medicaid already. I think I can hold that off for at least another year and keep the burden on my family instead of on the government. I am the lucky one, but there are many more out there that are not so fortunate.

I have an aide with my mother because it is the only gift that I can give her even though she is in a good facility. I recently found out that the State minimum requirement for a 60-bed unit is one RN. How can that be safe staffing? How can one nurse provide for 60 patients? I know that the facility my mother is in follows the minimum requirements because it is a government-run facility. However, do private care facilities do the same? Or are LPNs left with aides to do the care for 60 patients? I know how much dignified care one elderly person takes because I did home care for almost a year with the help of aides six days a week, 24 hours a day, and even after working a full week, I covered the seventh day myself. My mother could not be left by herself.

One of the biggest issues facing the elderly and the baby boomers is the home care issue. By home care, I'm referring to the time that the elderly begin to decline and not totally able to fend for themselves, yet, they are not ready for a nursing home or assisted-living facilities. The times they are not getting proper nutrition, can't do their own checkbook anymore, can't do normal daily living activities without some help. I call it the first transitional time. I do not believe that this home care issue is being fully addressed unless a person has been hospitalized. If a family realizes the need for home care and goes to an agency, you pay an arm and a leg. You don't really know what you are getting, and even if you do know, they can't always provide for you, especially replacement care. You are eventually forced to hire the agencies, and they simply cannot provide for you. If your regular aide gets sick or takes time off, there is no way that you can get a replacement. In my case, I was forced to hire an agency and agreed to pay the astronomical rates with the understanding that they could provide the service needed. When the time came, they were not able to provide a one-night aide or they were not able to provide for holiday workers, even though I was willing to pay the price, and thus, my mother ended up in a nursing home.

The cutbacks in home care have been devastating to all the elderly. In my mother's case, my mother was hospitalized for a broken hip, and after I got her home and started the home care process, I found out what she was entitled to, but it did not put her back on the road to full recovery. My mother's home physical therapy was cut due to cutbacks in the system. And even though she could walk the required distance with a walker, she couldn't "transfer" without assistance, and she was still cut off. How can a person be ambulatory in their own home if they're not allowed to relearn the transfer process?

I could go on and on with issues, but I do not want to take up the Council's time, but I will list some of the issues and elaborate if you desire. One, the safe staffing issue is of utmost importance. One RN to a 60-bed unit is not proper and realistic care for the elderly. Two, government must take the elderly into consideration at all levels of policy-making decisions because the world is changing so fast that one always forgets that some of the elderly are confused by all the latest advances, and the government institutes these policies without looking at the ramifications to the elderly.

The first one is the Homestead Rebate issue. Are you aware of how many of us baby boomers have helped the elderly with this? Some don't have push button phones. Some don't have the hearing or the reaction time reflexes necessary to participate in this rebate program. How many of our elderly are not going to get a rebate because of the frustration with the system, and how many of the elderly mixed this piece of paper up with other nondistinctive pieces of mail and simply pushed it aside?

The accessibility of medical buildings. How many of you have taken an elderly person into a medical building? Are these buildings accessible? Not to me they are not. The curbs and ramp angles are too steep for someone in a walker. There are not enough handicap parking places for the handicap at these buildings. The hallways are too long and the elevators are too far away from the entrances. I never gave much thought to these issues before until I was totally frustrated trying to get my mother into these buildings. Post Offices, restaurants, and grocery stores are more accessible than doctor's offices. Think about it the next time you enter a building. Also, medical office buildings do not have standard seating for feeble people, chairs without arm rests. Think about that, too. You have someone in a walker. How are they supposed to sit down without reaching back and holding on to something? Some of these issues could be addressed through changes in zoning requirements. Some of them are simple and basic.

The prescription drug policies need to be changed. Do you know how much waste there is with the throwing away of unused medications? The time you take her to doctors and bring her home or you take her to the hospital and bring her home, you have to pour a lot of drugs down the toilet because you can't use them. Even if they're the same prescription, you still can't use them.

Continuity of doctor's care. You have a physician for years, and he or she knows your medical history, and then when you go into a hospital or nursing home, it is like that human being becomes a complete stranger never to be seen again. Is that fair to the elderly who have established a trust relationship with their physician, and now at the age of 80, they have to start all over again? Is it fair to the new physician who does not have the accessibility of a complete medical history? Along with the continuity of doctor's care goes the issue of home care doctors' visits. I was fortunate to find a podiatrist to make a home care visit. I was also fortunate to have a dermatologist who made special arrangements for my mother's care. Both these doctors are from the Jewish culture, and I salute both of them from relieving me and my mother of stress for one day. More doctors should be like them.

Transportation issue for the elderly. The elderly are being transported by the private ambulance services. What exactly are the regulations for these drivers? Do they get rest periods? How many shifts are they allowed to work? If the regulations are there, are they being enforced? My experience has been both good and bad with this issue. My mother would have been left stranded in a lobby waiting room in a huge medical complex if I wasn't there and if I hadn't made arrangements with my job to be there. My mother can't even tell you her name, and I was supposed to allow her to be abandoned and not be picked up immediately. You can't leave a dog in a car or a child alone for the length of time my mother was supposed to be alone, so I advocated and got her moved immediately. She was lucky that I was able to be there that day. Was that dignified care?

Work permit process. The work permit process needs to be looked at because there are people out there who are willing to work as aides, but families cannot get work permits for them. And families are willing to sponsor immigrants to assist, but hands are tied because of the work permit process. The certification/training process is also cumbersome for the people who apply for jobs in aide agencies.

Quality-of-life issues. Are you aware that there are nursing home facilities without cable TV? Sounds as if it is a trivial issue, but to me it is not and to the elderly it is not. It is a quality-of-life issue and not an entertainment issue. They need the stimulation of music, arts, and educational TV to keep their minds functioning at any reality level.

Money is the bottom-line issue. No matter how much money you spend, you can't depend that the care will be there when my mother needs it or when I needed it or when I will need in the future.

However, I would like to end on a positive note. My mother is one of the lucky ones so far. I live in a great diverse area, the city of Plainfield, and my neighbors and friends have been my biggest source for assistance and help. People that I know who are caregivers have provided me with more practical information than any agency has provided. I am fortunate because my siblings have supported me in any way that they can. I am fortunate that President Clinton signed into law the Family Medical Leave Act because without that Act I would not even be here tonight to testify because I would have lost my livelihood trying to maintain my home and my mother's care. If I had to worry about my job in addition to the stress that goes along with being a primary caregiver, I know that I would not have been able to be here tonight.

I could go on and on with the various levels of care there are involved in being a primary caregiver, and my circle of friends are all providing care for elderly parents. There are many of us out there, and many simply do not have the time to even ask for help because we are too busy trying to get through the day.

I appreciate the opportunity to speak, and I don't expect miracles overnight, but people must keep the elderly in mind at all times. Give them dignity and respect.

ASSEMBLYWOMAN MURPHY: Thank you very much.

MS. PIWOWAR: Thank you.

ASSEMBLYWOMAN MURPHY: Are there questions from members of the panel?

ASSEMBLYMAN ROMANO: Madam Chair, if you would allow me, just let me say this.

Your whole presentation has covered what I might say we have heard from different people throughout the state. And you have touched every issue that we talk about. I mean, we can spend--

MS. PIWOWAR: Right, hours.

ASSEMBLYMAN ROMANO: We could use your presentation tonight as the topic for us to keep discussing and discussing. I just have one comment, though. Is your mother in a nursing home now?

MS. PIWOWAR: Yes, she is.

ASSEMBLYMAN ROMANO: Is it a public type of facility?

MS. PIWOWAR: Yes, it is.

ASSEMBLYMAN ROMANO: Who is it operated by? The county?

MS. PIWOWAR: Yes. It's a good facility. I have no complaints about the facility at all. I'm not here to complain about the facility. It's the best facility in the world.

ASSEMBLYMAN ROMANO: Now, when you did have your mother at home, you never had any sort of respite care?

MS. PIWOWAR: The only care I got was when my mother went into the hospital, and they sent in-home aides from there. The other ones were private caregivers that I found.

ASSEMBLYMAN ROMANO: And I get the impression that you paid for the aides yourself--

MS. PIWOWAR: Yes. Yes.

ASSEMBLYMAN ROMANO: --when your mother was at home?


ASSEMBLYMAN ROMANO: See, this is, Madam Chair, the CCPED Program where--

MS. PIWOWAR: I'm not the only one. I don't mean to interrupt you, but I know-- I could count five people on it that are doing it currently.

ASSEMBLYWOMAN MURPHY: There's a lot of people--

ASSEMBLYMAN ROMANO: No, but we're talking about-- There is a Program that would satisfy you with a sliding scale for payment where you would not have to be involved in getting a work permit for someone because these would be people already, let's say, designated to you. There are agencies that would take care of all that. And I'm sorry to say that the CCPED has limited funds. That's the right one? The acronym, right, CCPED?


ASSEMBLYMAN ROMANO: I don't want you to mark down something that was erroneous. We deal in the world of acronyms here.


ASSEMBLYMAN ROMANO: But this is, Madam Chair, when you ask for suggestions, that's one of my major suggestions--


ASSEMBLYMAN ROMANO: --is that the funds for that Program should be enhanced because more and more people who are not in poverty are willing to pay a sliding scale within reason, and then under the Program all these arrangements, that you had the runabout, are done by somebody else.

ASSEMBLYWOMAN MURPHY: Nancy, may I ask you a question? Having gone through this, do you have long-term care insurance? What are you doing for yourself?

MS. PIWOWAR: No, but I'm looking into it.


MS. PIWOWAR: Yes. I've already talked to people about it.

ASSEMBLYWOMAN MURPHY: Right. And do you and your mother or have you with any other member of your family talked about how you would want to be treated or how you would want it if you had a car accident and were paralyzed or something or had a stroke? Are these things that you are talking about?

MS. PIWOWAR: More so now than before. You didn't think about it before.

ASSEMBLYWOMAN MURPHY: It's something that we are hoping more baby boomers will speak about because they see what their friends are dealing with are going through, so they will begin to make some provision or have a look at the expectations. There are so many in numbers of your age-group that will be moving into the senior -- or third stage as someone spoke to me, and one does wonder how we begin to educate people to really think about this, to begin to look at this, and to begin-- We heard a big presentation on Friday on long-term care insurance and ways that we can enlarge the pool and increase the capacity and the knowledge for people to begin to become involved in their future.

MS. PIWOWAR: You got to do it at a local level. Public libraries, municipal buildings, so it's got to be at a local level--


MS. PIWOWAR: --because that's where you get the most information.

ASSEMBLYWOMAN MURPHY: And is that where you have gotten the most information?

MS. PIWOWAR: That's where I've gotten the most information is from local people in town who've been through the process. That's the first time I've ever heard of the CCPED, so I'll spread that word around.

ASSEMBLYWOMAN MURPHY: The place to speak to is your county Department on Aging. Are they in New Jersey, at least down here in Middlesex?


ASSEMBLYMAN THOMPSON: I think we have representatives tonight.

MS. PIWOWAR: Yes, we have it in Union County.

ASSEMBLYMAN ROMANO: Yes, but don't go away without giving her something on New Jersey EASE, which is the toll-free number.

ASSEMBLYWOMAN MURPHY: That's what she said.


ASSEMBLYWOMAN MURPHY: Yes. Their county is in that.

ASSEMBLYMAN THOMPSON: We have two people from the Middlesex Office on Aging and Monmouth will be speaking.


MS. PIWOWAR: Maybe that's the biggest thing is not getting the word out because people just aren't aware of it.

ASSEMBLYMAN THOMPSON: We have found this as we've conducted our hearings, that the education of people, getting the information out to them is a major problem. Many people are not aware of the services that are available.

MS. PIWOWAR: More proactive. I mean, because I just helped a lady not get bilked out of $6800 from a contractor. She came to me because she knew I would know how to handle it. And even our zoning officer, code enforcement officer at the local level have to be proactive and explain to senior citizens why the permit process is so important, so they don't get bilked out of $6800. But they come to people like me for answers because they don't know where else to go to.

ASSEMBLYMAN ROMANO: Two questions, if I may, because then I know we have other people to testify.


ASSEMBLYMAN ROMANO: Is you mother afflicted with some sort of dementia or Alzheimer's?

MS. PIWOWAR: Parkinson's disease.



ASSEMBLYMAN ROMANO: Now, if you had access to more health care at home, would you have kept your mother home?

MS. PIWOWAR: I would keep her home. Oh, absolutely.

ASSEMBLYMAN ROMANO: See, we go back to that story again.

MS. PIWOWAR: The whole problem was I couldn't get health-care workers for Christmas or Thanksgiving or for any of the holidays. I hired an agency. I was willing to pay twice the price, double the rate, and they could not provide me. And this was a certified agency that could not provide me with an aide.


MS. SHEPARD: May I call you Nancy?

MS. PIWOWAR: Sure can.

MS. SHEPARD: I want to identify with what she said because I'm already there. I'm 73, so it's as if you're writing my life story here, except I'm still mobile. The presentation was excellent and the facts are very good. I think what we need be concerned about are those people who are not as well educated--

MS. PIWOWAR: Exactly.

MS. SHEPARD: --and not as active as she is and knows what is going on so that they can also take the same kind of stand. Maybe not the same way as her, but at least they would know. There's just too many people falling through the cracks it seems to me.

MS. PIWOWAR: She's absolutely right. I'm a letter carrier by profession. I know there are people out there that no one knows about. I know the people who we buy groceries for because we don't see them go out in the wintertime, and we do that. People don't know we do that, but I've done it, and other people have done it.

And you're right, people do fall through the cracks, and it's very, very sad, and they get scared. They don't want strangers in their house. That's the most frightening thing.

ASSEMBLYWOMAN MURPHY: The utility companies at one time -- or the meter readers used to have quite a good program of being able to monitor because they walked or went from house to house--

MS. PIWOWAR: Inside the houses.

ASSEMBLYWOMAN MURPHY: --to read the meters, and they had another contact. Even though they weren't in the house, they were there, they could see signs of life around, and this kind of thing. There's all different ways, aren't there?

MS. PIWOWAR: Right. My national union, Letter Carrier Union, has a Carrier Alert Program, and they--

ASSEMBLYWOMAN MURPHY: Yes, that's right.

MS. PIWOWAR: --should contact them and get that involved with them because it's one of the ways they could find out if somebody is in need.

ASSEMBLYWOMAN MURPHY: You're right. We need to utilize those services.

MS. PIWOWAR: Utilize the Carrier Alert Program.

MS. ROBINSON: Nancy, may I ask a question?


MS. ROBINSON: Many baby boomers like yourself are caregivers for older adults. How would we best inform baby boomers who happen to be caregivers about Programs like New Jersey EASE and CCPED? What would you suggest?

MS. PIWOWAR: Probably public libraries because a lot -- or the Internet. A lot of us use the Internet, and a lot of us go to the public libraries, and the libraries are doing more and more. And, in fact, somebody I consulted on this, I didn't just make this-- I consulted with four or five other caregivers to write this. I said, "What's the issue? I'm going tomorrow. Tell me, tell me." And the Director of the public library said, "Don't forget about replacement care." He said that's the biggest issue for his father is getting somebody to cover when somebody gets sick, and you can't get them immediately, and then you're stuck.

ASSEMBLYWOMAN MURPHY: Did you utilize day care services, adult day care services?

MS. PIWOWAR: No. My mother wouldn't go on a bus. She wouldn't go on a bus. I tried. People talked to me about it. I wanted to do it, but it didn't fit into my work schedule.


MS. PIWOWAR: That was the big problem. It didn't fit into my work schedule.

ASSEMBLYWOMAN MURPHY: There are some that run all day.


ASSEMBLYWOMAN MURPHY: But if it doesn't fit your schedule--


ASSEMBLYWOMAN MURPHY: --it might as well not be there.

MS. PIWOWAR: Right. Exactly. It's useless. It's not helpful.

ASSEMBLYMAN THOMPSON: It's obvious you've put a great deal of thought and effort into what you did here, and I'd like to commend and thank you for it.

MS. PIWOWAR: Well, I appreciate you letting me go first because I do have to get back to my mom.


MR. MUNIZ: One question, if I may?


MR. MUNIZ: What do you see as the problem with the continuity of doctor care? Is it that doctors don't want to go to nursing homes or--

MS. PIWOWAR: They're not allowed to.

MR. MUNIZ: I don't see--

MS. PIWOWAR: They're not allowed to because they have a certain set group, even in the hospital when my mother was in a hospital. She had a skin condition. I knew that her dermatologist could handle the problem, and I had to fight and fight and fight to finally get them to allow-- He did never go in. They got another specialist to go in, but they wouldn't allow him to be there.

MR. MUNIZ: But the primary care physician who has been treating your mom for many years is -- he still cannot get into that nursing home?

MS. PIWOWAR: No. No. He has never been consulted.

MR. MUNIZ: But if your mom wants to continue having him as the primary care physician, she has every single right to have him come into that nursing home to follow her up.

MS. PIWOWAR: Oh, okay. I'll do that tomorrow.

MR. MUNIZ: Many physicians, though, don't like the idea of going into nursing homes, which is unfortunate because they see-- Nursing homes should be seen as a place to go and live the last years that you have of your life probably in a very comfortable environment, but many physicians choose not to.


MR. MUNIZ: So that might be a situation, also, that we should probably be looking into.

MS. PIWOWAR: And please look into that transportation issue because I'm real concerned about that. I don't know what the rules or regs for these people that drive these people around, but they just leave them in doctors' offices. I was amazed. My mother came out of the nursing home, got sent-- I got notified that day. I happened to be able to get off. I got up there. My mother would have been left in the lobby of a building such as this for 45 minutes with no one to care for her. And my mother couldn't have been able to deal with that. I would have lost her. For sure, I would have lost her. And nobody should-- The medical office building shouldn't take that responsibility or whatever, but I got on the phone with the transportation group, and I said, "Where are you? I want you here now," or I was going to put her in my own car and take her back. So that's a real issue.


MS. PIWOWAR: And the driver told me she had worked 10-hour days. So bus drivers have to take rest periods. Airline pilots have to take rest periods -- make those people take rest periods, too.

ASSEMBLYWOMAN MURPHY: Thanks very much, Nancy.


ASSEMBLYWOMAN MURPHY: Well, a great deal there. We'll start at the top. (referring to witness list)

John Wanat, the Executive Director of the Office on Aging in Monmouth County, and Alma Strack, who is the Assistant Director of the Office on Aging in Monmouth County. These two are people who have said they will testify together, and it's a good thing you work together.

J O H N W A N A T: It certainly is.

Thank you, Chairwoman Carol Murphy and Assemblyman Sam Thompson and distinguished panel for inviting us here to make a presentation. I'd like to just diverge two little minutes and talk about this young lady's presentation, which was absolutely wonderful. And in response to your question, that the New Jersey Natural Gas still keeps its Gatekeeper Program very active in the county of Monmouth because we get pretty much weekly referrals from the Office on some of the situations where they may find accumulation of newspapers and/or of a senior not being visible. And others taking notice that the grass was too long, etc., "So we had called so that we can notify the appropriate people about the possibility of protective services to come on in and take due note."

And the other part that was asked here about the baby boomers getting involved in long-term care, one of the things that we're just initiating within our county is to provide more and more information to specifically baby boomers via the TV network which we're trying to set up a senior TV network that we've just coordinated with Comcast and had a meeting on earlier today as far as programming that would go on this cable TV setup so that we can attract the senior network audience, but also to attract and provide information to those people who we will call the sandwich generation, who have youngsters still at home and parents and grandparents at home, so that they can be aware of situations affecting the aging population well in advance of needing the services and to know exactly what's out there to provide them with a wide range of social concerns and issues. So those are just two sidelines on the comments of that lady's excellent presentation.

I'd like to talk to you about the broad range scope of baby boomers that are about to enter the senior retirement arena. As you already know, this age-group, 65 and older, is expected to accelerate rapidly. I wish to address my remarks to some broad range issues that I see elderly people facing, and I have asked Alma Strack from my office to concentrate on some of the pressing community care issues that are currently before us.

I've got to tell you in advance that I'm on this job for four months thanks to Ruth Reader and our good Councilman in Freehold who brought me on board, but Alma has more experience in the field being in the Office on Aging a lot longer, so I've asked her to handle the more technical aspects of this presentation.

And as you know, the rapid growth among our oldest members of our population is going to create a greater utilization of our many health and social services. The older population trend increases projected for the state are also true for Monmouth County, as I'm sure they are of Middlesex and all the counties that are represented within our great state. As the baby boomers come into existence, our senior issues are going to be far greater.

The oldest seniors, persons aged between 80 and 84 and those over 85, are the seniors who are going to require more services as the trend of the seniors who want to age in place continues. Home- and community-based services such as meals, chore services, certified home health aides, shopping and housekeeping services will be in greater demand. And with this increase, the need for assistance for caregivers of the elderly such as respite care, support groups, and the training of on-care for the elderly will also increase.

In 1998, Monmouth County provided 86,609 congregate meals; over 280,000 home-delivered meals; over 60,000 hours of home health aide, respite care hours; and over 259,991 one-way trips for transportation.

And although Monmouth County Transportation has received accolades from other counties for its efficiency, demand continues to exceed the capability to provide the services, especially in remote areas and during evening and weekends and many times even when a person goes to the doctor and has to wait for an hour or so before the bus arrives to pick them up. Additionally, the public transportation infrastructure is generally inadequate and especially for this population. As seniors age, they rely more and more on public transportation.

My dad was a mile and a half down the road from this particular facility, lost his car several years ago through a second stroke. My dad didn't talk to me for an entire year; although, he kissed me every single day but did not talk to me in the manner that he had talked to me for all those other years. I had taken away something from him that was his livelihood, his transportation, and there isn't adequate transportation to get him to places like Point Pleasant and the Poconos that he was used to doing on a weekly basis. So transportation is a serious issue.

The other thing is the demand for transportation and assisted transportation for the needs of the elderly are in greater need.

We have learned that promotion of good health, fitness, and nutrition could go a long way in maintaining the health and the quality of life for older adults who have longer life expectancies. Without a focus on better help for this group, the number of frail and disabled seniors will be overwhelming.

A program that I have paid some attention to recently is a program in Seattle, Virginia, and Milwaukee that's called the Senior Wellness Program that includes three major components. First component is Lifetime Fitness, which is an hour-long, three-day-a-week class featuring exercises especially designed for seniors. The second component is a health enhancement program in which a senior center nurse helps clients evaluate their health as well as the attitudes toward behaviors that can influence their health. And then the third component is the self-management of chronic conditions, a course that teaches people how to live with chronic conditions.

This program which was conducted by 200 chronically ill senior participants found a 38 percent decrease in the number who required hospitalization and a 72 percent reduction in the number of days that they had to spend in the hospital. Funding for programs such as these are needed if the health promotion is going to continue, and that it is also a money-saving aspect. We have a similar program like this in Monmouth County called the Senior Citizens Activities Network; however, revenue to support programs like this are not always available and more is needed. Another issue is affordable housing and affordable assisted-living facilities are in greater need, and I hope that this committee (sic) will address that. We currently have two-year waiting lists for affordable housing. The lists will get larger, not less, as our elderly population increases.

Monmouth County has eight licensed assisted-living residences and licensed comprehensive personal-care homes with six accepting Medicaid waivers. And I understand as of yesterday, one of the others is going to apply for a medical waivers program. More facilities are underway; however, the issue of affordability is of major concern. Some of the assisted-living facilities have vacancies, and these vacancies would be filled if it were not for the affordability issue.

Nationally, 6.5 million Americans need help with their daily tasks, and over the next 20 years these numbers will double. It is estimated that assisted living costs about 40 percent less than nursing home care, and residents pay their own rent instead of reliance on Medicare and Medicaid. Further, whether a person should be in a nursing home or in some other type of community-based program, this is an issue that is looming before us at the present time and one that needs to be addressed.

And I've asked Alma Strack, who is my assistant, to cover this issue of the long-term care issues.


MR. WANAT: You're welcome.

ASSEMBLYWOMAN MURPHY: Please don't go away for a minute.

MR. WANAT: All right.

ASSEMBLYWOMAN MURPHY: Are there questions of the Director?

ASSEMBLYMAN THOMPSON: I was with some of your people this weekend doing the Monmouth Mall walk. And last week I also met with the Senior Council there, and they were all citing what a great transportation system you had worked out with the taxi companies in your county and wanted it here in Middlesex.

MR. WANAT: In spite of the fact that we do have, and as I just mentioned, one of the better transportation systems, we still need a lot more for cases like this young lady's, where someone may be waiting for an hour or two after a doctor's appointment. I take my mother-in-law in Toms River, for example, who is a sturdy woman at age 83 and walked three miles back to her home because she couldn't find the taxicab driver who was supposed to pick her up and who didn't arrive after an hour or two wait. And so issues like that-- It's not that we're not providing the services because we truly are. It's that the demand for the services are far greater than the resources that we have in order to make it work more smoothly.

ASSEMBLYWOMAN MURPHY: Do you have a copy of your testimony that we might take?

MR. WANAT: Yes. I'll present this to the clerk.


MR. WANAT: As I said, Alma, who's been with our Office a lot longer than I have and who has a better handle on it, and I'm willing to admit as a newcomer to the field that, although I'm a visionary, I don't have all of the past history in order to make things work as smoothly as I would like to. But I do want to tell you that we have initiated as the State has requested an 800 New Jersey EASE number. And with that number, people from anywhere in this great state can call one number. And if they call Monmouth and they want to know something in Middlesex where their parents are living, that same phone call will transfer over to give them those kinds of services, so that we have much in place. But with the new baby boomers coming in, we're going to need a lot more.

ASSEMBLYWOMAN MURPHY: And do you happen to have that number off the top of your head?

MR. WANAT: Off the top of my head--

ASSEMBLYWOMAN MURPHY: Nancy, this is for you.

MR. WANAT: --I was hoping you would ask, 1-877-222-3737. So that is 1-877-222-3737, and one phone call should get you all that you need as far as information, housing, medical, etc., whether it's in our county or any other county in the state.

ASSEMBLYWOMAN MURPHY: And that's a free call?

MR. WANAT: Absolutely.

ASSEMBLYWOMAN MURPHY: Thank you very much, Mr. Wanat.

MR. WANAT: You're welcome.

ASSEMBLYWOMAN MURPHY: We appreciate your testifying


A L M A S T R A C K: The projected statistic that the 85-plus population in our state will rise to approximately 230,000 individuals by the year 2030 certainly gives us ample incentive to carefully plan an array of services to meet the very special needs of this population. A girl born in 1995 has a one-in-five chance of living beyond the age of 100. Although we have, through medical breakthroughs in our lifetime, greatly extended life expectancy, we have not significantly established dignified ways to live with the multiple chronic illnesses that often render our older population dependent on help to maintain their independence in the community.

It is our generation, the baby boomers, or those of us who are slightly older who will be part of this 85-plus population explosion. I think all of us as we age would agree that we would prefer to continue to live in our own homes and communities exercising as much control over our lives as possible.

Governor Whitman in her State of the State Address last January took the initiative to propose major care options for elders in our state. It is imperative both from an economic viewpoint and from a quality-of-life viewpoint that we allocate the funds needed to implement those options.

As service providers, we urge the State Legislature to approve funding for the Governor's Community-Based Home Care Alternatives. This plan would allocate $36 million in State funds with an additional $24 million in Federal Medicaid funds to create Medicaid waivers for home care services. This program would target those New Jersey seniors at highest risk for nursing home placement.

The Governor's plan includes a provision that would allow non-Medicaid waiver eligible seniors to receive home care services on a cost share or on a sliding scale basis. Enabling seniors to pay for services on an ability-to-pay basis makes good economic sense, allows programs to be extended to others, and ensures a sense of dignity to the seniors we serve.

National figures show that 18 percent of seniors over the age of 85 reside in nursing homes, but it is estimated that 30 percent of this institutionalized population do not need this high level of care. It is our experience as service providers that many of these seniors are placed in nursing homes because reasonable and affordable home care services are not available in their communities to assist them or to help their family members keep them at home.

After exhausting personal resources, Medicaid pays for nursing home care, but at the present time except in limited cases, it is difficult to support oneself in the community and meet present community Medicaid eligibility.

The State Department of Health and Senior Services has pledged this year, through the Community Choice Program, to return 1000 nursing home patients who are not in need of the highest level of skilled nursing care to community settings. It is very important that community-based home care services are available to those seniors.

Obviously, nursing homes and high-level skilled nursing care will always be an important part of our long-term care, but premature placement in nursing homes for seniors who could be maintained in community home care programs is not cost effective nor does it preserve dignity and choice for seniors.

In conclusion, I would like to again urge legislators to provide funding for Governor Whitman's Community-Based Care Alternatives and to ensure that these funds will be annualized to meet the challenges of the burgeoning older senior population in the new millennium.

Thank you very much.

ASSEMBLYWOMAN MURPHY: Thank you very much, Alma.

Are there questions for Alma?

Thank you, and do you have a copy of that testimony?


ASSEMBLYWOMAN MURPHY: Thank you very much. Those are important figures for us to keep in mind and to hold.

Thank you.

Our next presenter, Ann Koehler, Director of Pleasant Valley Day Care.


A N N M . K O E H L E R: Good evening, Assemblywoman Carol Murphy and Assemblyman Dr. Sam Thompson, distinguished guests, and all who have come to this important meeting.

My name is Ann Koehler. I am the Director of Pleasant Valley Adult Day Care operated in the Woodmere Senior Citizen Housing complex. Pleasant Valley operates as a social day center. Part of my duties as Director is to try to outreach to the community which needs our help and to counsel people who come to seek help for their loved ones.

There are many alternatives to providing elder care, and I am here to describe adult social day care alternative. It's estimated that about 6 million families in the United States are caring for aging parents. Because of its relatively low cost, ease of acceptance by clients, and convenience for the caregivers, the main advantage of social day care is that it tries to keep the family together as long as possible.

Our program is designed for those who can't participate in normal senior activities because of their physical limitations, beginning with Alzheimer's disease, strokes, heart attacks, dementia. Because of our location in the ambiance of our center, many of our clients come to think of us as their club, making adjustments to the program relatively easy.

At Pleasant Valley we conduct a structured program consisting of exercise and activities designed to maintain and improve where possible the mental acuity of our clients and their physical well-being. We also take outings to parks, restaurants, malls -- wherever we can take them, we take them. We provide transportation from our center for most clients while others are brought by their caregivers, or thank God for Middlesex County's areawide transportation. I don't know what we would do without it, not only for this program, but I'm also a service coordinator in this building for seniors at Woodmere two days a week. And if I didn't have areawide transportation, my seniors could not get to doctors that they need to get to, so thank God for that.

We provide a light breakfast, hot lunch, and a snack supplied through Bayshore Hospital to assure that the nutritional needs of the clients are met. Our staff includes a nurse who monitors the clients and keeps the necessary records. We administer medication prescribed by a physician and as directed by the family.

Our program provides social interaction, reinforcement of social bonds, means of maintaining and sometimes improving the mental acuity of our clients, and maintenance of their physical health. It gives respite to our caregivers of our clients who need time to shop, to take care of home, engage in other normal activities of keeping the house, the job, or whatever.

Social day care is an important option. It is not presently covered by Medicare. That is what I'm here for. The first thing I hear when people call, "Is your program, social day care, covered by Medicare?" We are not. We have to go out for grants, which thank God for the Title 3 money from Middlesex County. I don't know where my program would be. So thank God. I thank God for that. I'm in this program 10 years, and elder care options are relatively new. Ten years really isn't new, but a lot of people don't know about us, and my main reason for being here tonight is we need more media coverage. We need more information going out to the public about day care. A lot of us work with very small budgets, and we really can't market our day care, our social day cares, so I'm looking for Medicare, hopefully, to help us out. I know they do help out medical day care, but we're social, so we're not covered under this.

Improvements in medicine and public health have increased longevity. Middlesex County data shows that 4 percent of its population is over 75 years old and 1 percent over the age of 85. This population is growing. There is a need to make sure that this program is known throughout the states, not only in New Jersey but all over. It's a wonderful program.

And that's about what I have. I need help.

ASSEMBLYMAN ROMANO: What was the name of the place where we were at where you and I both took a picture in the hall? What was that, Morris?

ASSEMBLYWOMAN MURPHY: No. We were at a day care center.



ASSEMBLYMAN ROMANO: We were at a place where there is a continuum of care. It's just not one facet. It starts with adult care, and it's run by a hospital, or would you call it a hospital or medical system?



ASSISTANT COMMISSIONER READER: Private, not-for-profit agency.

ASSEMBLYWOMAN MURPHY: It was a great big, big place.

ASSEMBLYMAN ROMANO: No, I'm saying the name of the outfit. Who it was?

ASSISTANT COMMISSIONER READER: Adult Day Care of Somerset County.

ASSEMBLYMAN ROMANO: Right. Well, they had it starting with adult care. They had it with examinations for wellness, and they had an acute care hospital, and then they had sub-- Actually--

ASSEMBLYWOMAN MURPHY: No. It wasn't that one. It was another one.



ASSEMBLYWOMAN MURPHY: It wasn't the one in Somerset.

ASSEMBLYMAN ROMANO: That's why she threw me off with the name.

ASSEMBLYWOMAN MURPHY: It was another one.

ASSEMBLYMAN ROMANO: And other varying types of alternative living styles, so there has to be a continuum. And what they do on their own as far as adult care to provide those services with wellness, and that is something that we look to have achieved somehow providing adult care. Providing adult care for Alzheimer's patients--


ASSEMBLYMAN ROMANO: --and giving them the will, I would say, and to help keep them cognitive. Too often, unless we exercise the brain, that leads to advanced Alzheimer's and dementia. And I was sorry to learn -- I thought I was such a smart person -- there is no cure for Alzheimer's. All you can do is postpone it--

MS. KOEHLER: That's right.

ASSEMBLYMAN ROMANO: --as long as you possibly can. And this is what we're here for. So we hear what your saying. I'm sure the Chairperson will have something to say.

MS. KOEHLER: It's the funding we need. Funding is very important here.

ASSEMBLYWOMAN MURPHY: Can I ask a question? Do you charge by the day for the number of days the people are in the program?

MS. KOEHLER: Yes. It's $59 a day.

ASSEMBLYWOMAN MURPHY: And how many people do you have in your program now?

MS. KOEHLER: Well, this is one of my problems. Our program is in Spotswood, and I have people calling who live in Spotswood, and we're there 10 years, and they don't know about us. And I think it's due to the fact that it's not publicized. We try to publicize it.

ASSEMBLYWOMAN MURPHY: But I'm just trying to find out how many people you can accommodate.

MS. KOEHLER: Oh, I can accommodate up to 30. In fact, we go three days a week, which the building that we're in is Woodmere Senior Housing, and it is given to us free to use their community room.

ASSEMBLYWOMAN MURPHY: To bring the program in is their community effort.

MS. KOEHLER: Yes. Yes. To bring the program in.

ASSEMBLYWOMAN MURPHY: Are most of your clients people who live in Woodmere, or do they come they come from--

MS. KOEHLER: No. They come from Spotswood, Jamesburg, Old Bridge, East Brunswick.

ASSEMBLYWOMAN MURPHY: And you have about 30 a day?

MS. KOEHLER: We can accommodate up to 30 a day. We don't have that at the moment because, once again, funding.

ASSEMBLYMAN ROMANO: But you have certain requirements, though. Let's take this adult center right here. As I was speaking to the directors, I mean, they will not take somebody who is incontinent.

MS. KOEHLER: Oh, we do. That's the difference.

ASSEMBLYMAN ROMANO: You do. That's the point I'm trying to make. To what level will you go taking care of somebody?

MS. KOEHLER: We take people in wheelchairs, incontinent. In fact, today I had a gentleman call for his father. His father is blind. Will we take him? Yes, we will. We do take incontinency. We do change diapers. We do give medicine.

ASSEMBLYWOMAN MURPHY: And do you also have Alzheimer's with that, or is there an Alzheimer's day care center in the area?

MS. KOEHLER: Alzheimer's day care? I don't know whether there's just that.


MS. KOEHLER: I know St. Peters is a medical day care center, and they take very, very severely ill people, but we do take people with problems. It's not a senior center. These are people who cannot be in a center like this. They're too slow. In fact, today I'm a little upset because one of our gentlemen had a stroke after lunch, and it kind of got us a little upset.


MS. KOEHLER: He's in Bayshore Hospital.

ASSEMBLYWOMAN MURPHY: Yes. It surely would.


ASSEMBLYWOMAN MURPHY: What do you do for transportation if someone has that? You 911?

MS. KOEHLER: Yes, 911. And Spotswood comes right away. They take them to the hospital.


MR. MUNIZ: Just a quick question.


MR. MUNIZ: You said $59 a day--


MR. MUNIZ: --for the social model of care.

MS. KOEHLER: Yes. Yes.

MR. MUNIZ: But you provide a lot more than social care. You provide medical, I would say.

MS. KOEHLER: Well, we do.

MR. MUNIZ: You administer medication. You change diapers, and that's more of a medical model.

MS. KOEHLER: Well, medical is even much more into changing catheters and things like that. We don't do that.

ASSEMBLYMAN THOMPSON: But he's saying, you're not strictly social by your doing these things?

MS. KOEHLER: Well, yes we are. We're social.


MS. KOEHLER: We are, yes. We go a little further, okay, but we're--

ASSEMBLYMAN ROMANO: They push the envelope to the edge.

MS. KOEHLER: Yes. I guess you could say that.

MR. MUNIZ: And the $59 is paid by the resident?

MS. KOEHLER: By the family.

MR. MUNIZ: The family?


MS. ROBINSON: Is that the going rate $59 a day pretty much?

MS. KOEHLER: That's about the going rate. Yes, $59. Thank God we do have funding. We have CCPED. We have Title 3 money, Alzheimer's, grant nutrition. We have to write these grants.

MS. ROBINSON: So if you didn't have all these subsidies, it would be even higher.


MS. KOEHLER: Yes. Yes. Our center would run into a lot of problems because the people -- a lot of the caregivers cannot afford $59 a day, even though that's--

ASSEMBLYMAN THOMPSON: So you have some that are -- they don't pay the 59. It is covered through the grants that they're--

MS. KOEHLER: Right. Covered by the grants. But the grants don't match up to the $59. They may be $35, $40 per person.

ASSEMBLYMAN THOMPSON: But some individuals are there without having to--

MS. KOEHLER: There's a sliding scale.

ASSEMBLYMAN ROMANO: You had indicated you can take up to 30.

MS. KOEHLER: Yes, we could.

ASSEMBLYMAN ROMANO: Well, what's your normal staffing?

MS. KOEHLER: I have myself, a nurse, and two assistants, and a volunteer -- two program aides. But we don't have 30 now, we've been-- We're up to about 18. We could take 30, but again we need more press on it. The people knowing that we have this program-- A lot of people aren't aware of adult day care. That is our problem.

ASSEMBLYWOMAN MURPHY: Well, we thank you so much for speaking to us. We surely are far more aware of it than we were when we began having these hearings, I must tell you, Ms. Koehler.

MS. KOEHLER: When I heard you were having this meeting, I'm not much of a speaker, but I said, "I'll be there."

ASSEMBLYWOMAN MURPHY: Well, you did very well.

MS. KOEHLER: I'll come to speak up because I think it's such a wonderful program. As I said, I'm in it 10 years, and it's tough to retire, even though my husband's retired.

ASSEMBLYWOMAN MURPHY: I think this is the lady (referring to Hearing Reporter) who will take the testimony, if you don't mind. I thank you again. We all thank you for coming out this evening for us and speaking on behalf of your clientele.

MS. KOEHLER: Thank you.

ASSEMBLYWOMAN MURPHY: It's very important.

ASSEMBLYMAN ROMANO: Did anyone watch Channel 7, Alive at 5 tonight? They had a program on elder care. I'm sorry you had to miss it. I was just curious if they're talking about the same thing we're talking about. I have people taping it for me for when I get home.

ASSEMBLYWOMAN MURPHY: You have to share it with us, Lou.

Lowell Arye. Am I pronouncing that right? Is it Arye?

L O W E L L A R Y E: It's pronounced Arye.

ASSEMBLYWOMAN MURPHY: Arye. Thank you very much, Mr. Arye.

MR. ARYE: Thank you.

ASSEMBLYWOMAN MURPHY: Lowell is the Executive Director of the Alliance for the Betterment of Citizens with Disabilities, ABCD.

MR. ARYE: Good evening. I really do appreciate your allowing me to testify today. Let me first start off by saying that I'm a gerontologist by training. I spent six years working on these issues on aging and on long-term care issues for a lot longer than my face necessary makes it look like. I've been working on gerontology issues for almost 20 years now, both at the national and the state policy levels. I also deal with people with developmental disabilities.

The Alliance for the Betterment of Citizens with Disabilities is a statewide organization. And if you look on the front cover of my testimony, you'll see my membership.

And Assemblywoman Murphy, Mr. Thompson, Senator Robertson, you see that many of my member agencies are in your districts.


MR. ARYE: ABCD member agencies provide an array of community services to over 5000 people with multiple physical and development disabilities, and they provide educational information to over 20,000 individuals in New Jersey.

Developmental disability is a severe chronic disability which is attributable to a mental or physical impairment which occurred prior to age 22. It's likely to continue indefinitely, results in some substantial limitations in three or more areas including self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. These individuals have diagnoses such as cerebral palsy, mental retardation, autism, spina bifida. Many of them use wheelchairs and require assistance and activities of daily living such as feeding, toileting, and bathing.

The last witness talked about adult medical day care. Many of my member agencies provide adult medical day care to people with physical developmental disabilities and only receive $57 to $59 a day. So you probably wonder why someone such as myself who advocates on behalf of people with developmental disabilities is testifying in an elder care hearing. It's because people with developmental disabilities are aging just like the rest of the population, and, in fact, the life span of people, with individuals (sic), is lengthening even more than currently. Mortality rates are now approaching that of the general population. And so this dynamic shift in the change in demographics is going to change the way in which you all think about elder care and elderly issues.

The increased longevity also creates a new phenomenon, aging caregivers, primarily parents who are already old, who are caring for their disabled adult child. They need family supports because of the demographic changes. There's a lack of literature on aging and developmental disabilities in general, but what we found to date is that people with cerebral palsy, people with multiple physical disabilities, like cerebral palsy, experience effects of aging earlier than their nondisabled individuals. And what I have in front of you, attachment, is something that I call a Policy Synthesis that lays out some of the issues that have been found in a lot of the research. Instead of giving you hundreds of pages, I've gleaned through it.


MR. ARYE: Some of the age-related changes mentioned include manifestations of pain, decline of mobility, osteoporosis, decreased endurance, postural spine changes, lung and heart complications. For an older individual with CP, one of the primary reasons for their death is cardiovascular and respiratory. Many of them have been in their wheelchairs all their lives and don't have the abilities to get the cardiovascular changes.

Demographics for this population are quite staggering to say the least. It's estimated in the United States that there are between 250,000 to 1,000,000 individuals who are currently aging with developmental disabilities, meaning that they have-- They're age 60 or older according to the Older Americans Act. As with the rest of the population, this is going to double in the next 25 years.

Now, you're probably wondering what's going on in New Jersey. Well, a lot of the statistics throughout the country are very vague, but in 92, Rutgers University performed a study for the New Jersey Developmental Disabilities Council to look at and estimate the size of all individuals with disabilities in the state. And they looked at people with developmental disabilities. And what they found was that they estimated between 50,000 and 80,000 individuals with developmental disabilities live in New Jersey currently, and this is as of 1992.

What the data show are that on average in 1992 the typical adult with developmental disabilities was aged at 36 years old. That means they're age 41 now. They're my age. That means they are part of the baby boomer generation. They are at the end of it, but they are the biggest part of it. Over 55 percent of these individuals are female; almost 83 percent are white.

New Jersey Division of Developmental Disabilities provides services to many of these individuals, approximately 23,000 individuals, 20,000 in the community currently. And these are just adults aged 22 to whatever, whatever age it is. What we've found is that for those individuals, the 20,000 approximately who are living currently in and provide services from the Division of Developmental Disabilities, close to 6000 of them are age 35 to 55 now. We're not even talking about the 30,000 or so who we don't even know about. Who they are? What they do? Where they live?

Approximately one-quarter of these individuals currently receives residential services. That means that almost 15,000 of these individuals are still living mostly in the homes of their caregiving adults -- parents. Just like all gerontological research has demonstrated for the last 20 years, the primary people who are the caregivers for the elderly are the same for any disabilities. It's women. So we're talking about elderly women age 60 and over who are providing services to their disabled sons and daughters.

In 1995, the Spectrum for Living and the Arc of Bergen County performed a survey in Bergen County about the waiting list. We currently have over 5000 people on the waiting list for residential services. And what they did in Bergen County-- They have the largest part of that waiting list-- Seventy-six percent of their caregivers are age 62. That shows you-- Now, that's a large-- Bergen County is one of the largest, but that's a large number of people.

So what initiatives can we do to assist older people with developmental disabilities and their caregivers now? Well, there was a White House Conference on Aging, and there was a miniconference specifically on the aging of people with developmental disabilities focusing in on the aging caregivers. They came up with two major recommendations. One was to ensure that advisory councils include both older caregivers and persons with disabilities, and also, that we ensure full access to family support moneys for older families.

The Governor's initiative, which was mentioned earlier, using some of the tobacco settlement money to create and expand senior initiatives to promote long-term care options for seniors, included some initiatives on their caregivers, specifically allowing them to purchase home care services and use care managers for the frail elderly. I would recommend that you use some of that tobacco settlement money as well to create similar programs for seniors with children with severe disabilities provided to their caregivers. There are family support services in the Division of Developmental Disabilities, but it's very small.

We also need to increase collaboration between aging and developmental disability services. I can tell you that the New Jersey DD Council has just given me a grant for $2000 to hold a hearing in October on aging and developmental disabilities. We're calling it Aging Together, and we're, in fact, inviting Bob Williams, the Deputy Assistant Secretary for Aging, Disability, and Long-Term Care for the Federal government, to come speak.

We need to include strategies and programs to address the special needs of older adults with developmental disabilities in the aging network. For example, the Older Americans Act specifically says and had amendments in 1987 and 1992 to provide technical expertise and information on building coalitions, enabling aging and disability agencies to work together. We need also innovative funding mechanisms to basically allow flexible dollars so that the dollars go with the individual. So if there's somebody in an adult day program right now being funded by the Division of Developmental Disabilities, they currently can't retire, not like you or me. We should be allowing some flexible funding to allow that to go to a senior center or to a senior day program like was just heard so that they can -- and allow some of that funding. That would help with some of the funding.

What we need to do is develop a range of service options congruent with the spectrum and needs and the capabilities of a population. Specifically, we shouldn't be talking about somebody with Alzheimer's disease, somebody with cerebral palsy, somebody with spina bifida. We should be talking about issues for people who have functional needs -- the services necessary out there and long-term care services both now and in the future for the baby boomer generation should be based upon that.

I also want to speak briefly--

ASSEMBLYWOMAN MURPHY: Mr. Arye, if you don't mind. I'm looking at the clock. I have five more people who wish to speak.

MR. ARYE: I'm sorry. Yes.

A quick thing as a baby boomer. Let me say, as a baby boomer, I've written on this in a number of places. There was a discussion about long-term care insurance. Right now, Medicaid is the long-term care insurance for the middle class. That's the problem. The problem is that long-term care insurance right now at this moment in time is too expensive for people like myself who are caring for myself, for my family, and for my aging parents. And that's the problem. Clinton put in a proposal which would start to look at these issues and would expand family and Federal employee health benefits program, long-term care insurance. That's great, but we've got to find other ways to fund services for long-term care for the baby boomer generation.

ASSEMBLYWOMAN MURPHY: And I will tell you, Mr. Ayre, that I really think that this is the time the baby boomer generation has got themselves to begin to start thinking of how are they, what suggestions they have, how they are going to do this? We have heard an awful lot as we have gone through or run into the conversations that speak about an older person's need to leave things to their children and to their grandchildren, to leave the house, to make sure that they have some money when the older person is gone. And I have to tell you, I'm coming more and more to the feeling that what I'm going to say to my children is, "Yes, I've sold the house, and your father and I are taking care of ourselves, and the greatest gift I can give you is I'm off your back." So maybe leaving my house to my kids is no blessing if what they get with it is me. (laughter) Because I have a feeling I'm not going to be any nicer than I have been a lot of times in my years.

But I do appreciate your coming. We'll take your testimony much to heart, and thank you very much for being here.

MR. ARYE: Thank you very much.

ASSEMBLYWOMAN MURPHY: Margaret Chester from Middlesex Office on Aging.

ASSEMBLYMAN THOMPSON: While she's coming, I would just to comment that at Friday's hearing we did hear about some long-term care plans that you'd be surprised at how affordable they are.

ASSEMBLYWOMAN MURPHY: Yes. Some effective ways this is being looked at nationally, too.


M A R G A R E T C H E S T E R: You have to excuse me, I forgot to bring my box this morning, so I'm going to stand up on my toes here. (referring to height of podium) I certainly appreciate the opportunity to be here this evening.

ASSEMBLYMAN ROMANO: You don't have to use that lectern. You can carry the mike in your hand on the side.

MS. CHESTER: I don't think it's going to project.

ASSEMBLYWOMAN MURPHY: I think it's just fine. It's just fine.

MS. CHESTER: My name is Margaret Chester, and I'm currently the Executive Director for the Middlesex County Office on Aging. I come here today with an unique perspective in that every day I receive calls from people my own age trying to find solutions for caring for their parents, and I also work full-time, obviously, and oversee the care of my own 87-year-old mother-in-law, who, thankfully, resides in my county. It often requires me being there morning, noon, and night. I often spend my lunch time there to care for her. As an only daughter, I am also called upon periodically to assist my own parents who reside in Ocean County. When my grandparents in the early 60s took ill, my parents took them in to live with us. That was a concept that has very often slipped away from us. In those years, I came to see how important it was that family caregiving is something that people would opt to do if they have the opportunity and the wherewithal to do it.

During my 28 years with aging programs, much has changed and much remains the same. Issues being advocated for during the early 80s White House Conference on Aging and Governor's Conferences were still at the forefront of discussion at the 1995 White House Conference on Aging and Governor's Conferences.

Economic security, good health, and social well-being are essential to seniors today, and they will be for those of us in the future. By the year 2000, there will be 26 times as many Americans over the age of 65 as in 1900. Also, in the year 2000, there will be almost 76,000 Americans at least 100 years of age. If you want to think forward to the baby boomers in contrast, there will be more than a million baby boomers who will live to be 100 years old, with women significantly outnumbering men. Delays in planning for our older population can only result in greater demands that we cannot attain.

Long-term care for older individuals is of critical importance, and the window of opportunity for developing and implementing a comprehensive, cost-effective, national policy is closing rapidly. It's estimated for every older person in a nursing home receiving long-term care assistance at the present time, four people are living in the community who need care. Those ratios are going to increase dramatically as myself and other baby boomers reach golden age.

At the present time, the vast majority of care providers are family members most of whom are wives, sisters, and daughters. I am concerned like other women of my generation who have no children. Who will be there to help take care of us? We realize that family care may not be an option as we reach advanced age. I feel that programs that offer affordable support and relief to seniors and caregivers, as well as others, are needed to lessen the stress placed upon individuals and families both in the workplace and in the home.

About a third of all Medicare beneficiaries have no drug coverage at all, and more elderly are joining these ranks as they lose drug benefits when their HMOs reduce coverage or pull out of the Medicare market. Out-of-pocket prescription costs for the elderly are substantial because of the rising cost of drugs and their need for greater use. Many seniors are slightly above the current PAAD income guidelines but spend thousands of dollars a year to manage chronic illness. This often places them at financial risk.

In many communities, the rapid escalation of older persons needing services will overwhelm the State, as well as us at local governments, causing us to face major fiscal challenges. The Federal proposals to increase State flexibility and responsibility for addressing human service programs requires the development of cost-effective policies that adequately respond to the growing needs of the aging populace. This cannot be planned or accomplished by the State alone. It will require close coordination and involvement by county and local government, who often become the implementors of the policy.

Programs at the local level must address the unique needs of all seniors and particularly reach out to the isolated and vulnerable older adults. Communities need to identify and integrate isolated older persons in their programs and be sensitive to the increased vulnerability of women in their advanced ages. Hopefully, work during the 2000 census will be able to provide emphasis on locating unseen and often uncounted older persons.

In the coming years, we should be looking toward and encourage the involvement of more volunteers providing senior services to help maintain and increase services. Our expanding older population could remain vital and involved in the community as an important pool of talent and skills available to assist schools, hospitals, seniors and other human services programs. When I retire, I hope that I will have good health and be able to be one of those volunteers. People retiring today are typically able to look forward to another 20 to 30 years of life.

Less than half of today's full-time workforce is covered by an employer-sponsored pension plan. Many workers are unable to carry pensions with them when changing jobs. I experienced this firsthand. Prior to coming to the county, I had worked for a nonprofit senior employment agency for 17 years. When expenses needed to be cut, top-salaried positions were eliminated. I was left with no paycheck and no pension. This gave me grave concern. In my 40s, I had to start over to build a new retirement fund. There are a lot of other people my age who are out there in the same situation today. Unless trends change, millions of Americans will reach retirement age with few sources of income to meet their future needs, and this will create added burden on public programs.

To address the issues of economic security, good health, and social well-being, the following should be considered. Some of them are things that the State can directly do, and others are things that the State can certainly support at the national level, and this is support the importance of the Social Security Program. I see many people, especially women, who have been working in the workforce who have earned lower incomes and, therefore, are not either getting pensions or are getting minimal social security. Those are the women who very often will be coming to us in the future, people my own age, who will not have sufficient income and will be looking to the government. If they don't have enough income to maintain themselves now, they don't have enough money to put aside for the future.

ASSEMBLYWOMAN MURPHY: Ms. Chester, could I ask if you can kind of summarize.


ASSEMBLYWOMAN MURPHY: We have a member who is going to leave, and there are others who haven't even spoke.

MS. CHESTER: If you like, I can actually give you my testimony and--

ASSEMBLYWOMAN MURPHY: Oh, we would want your written testimony. Absolutely.


One thing then I would like to specifically note is if the State could review the Casino Revenue Fund to ensure funding for programs directly related to aging and disabled people and study the impact of the Fund and the cost to individuals participating if the income eligibility were raised and a tiered cost share based on income and prescription costs were factored in.

And to also look in the future, if I'm not able to maintain my own home, I have no place to go. In our county, there are assisted-living facilities being built, but the majority of the people can't afford to live in them, if you look at the cost factor being $3500 to $4000 a month.

ASSEMBLYWOMAN MURPHY: We appreciate that.

ASSEMBLYMAN ROMANO: As you walk off, just let me say, when you talk about the Casino Revenue Funds, you talk about the PAAD Program, Lifeline, etc., the Casino Revenue Fund is not enough to pay for it. There are general appropriations in the general funds that have to go with it and support those programs.

ASSEMBLYWOMAN MURPHY: But thank you very much, Ms. Chester, and we certainly will look at it.

Mr. Paul Mullin, Legal Services Corporation.

Mr. Mullin, if you have written testimony, can I ask if you will just summarize it for us and--

P A U L M U L L I N: I do not, but I can summarize my comments very quickly for you.


MR. MULLIN: Economic security and medical care are the two things that concern baby boomers as they get older. Most baby boomers don't even think about it until their parents reach the age where they meet these issues.


MR. MULLIN: Medical care and prescription drugs are bad now. I expect as medical advances occur there will be more prescriptions, more expensive drugs that will enable us to live a healthy, decent life and live more independently. If we cannot afford them, it's not going to be of any use.

As Ms. Chester pointed out, many people will not be going into retirement with any medical benefits other than Medicare or Medicaid or any pension benefits and rely on social security. With the transition in employment these days being much greater than it used to be, you can no longer can expect to have a career in a company that provides benefits. There will be more reliance on the public benefits available through social security.

And the demographics, not only will there be more senior citizens, but there will be less of the generation available to care for senior citizens. The baby boomers-- When we grew up, many people our age, we have a number of siblings. When we become senior citizens, there will be fewer children to rely upon to take care of us. There will be a much heavier burden on those children who are there. They will more likely be sharing the responsibility with maybe one, possibly two, other siblings on the average. Whereas, the baby boomers today are sharing it among a much greater number of siblings in most cases.

ASSEMBLYWOMAN MURPHY: And with divorce and with many sets of family members, two or three parents, and stepmothers and stepfathers, heavens knows who's going to end up with who.

MR. MULLIN: That's right. And most likely, many will end up with no one to take care of them.

ASSEMBLYWOMAN MURPHY: Even if they drew straws--


ASSEMBLYWOMAN MURPHY: --someone is going to come on the short end of all this I am afraid, but I hear you, and it is a very serious issue. I heard a radio announcement the other day from the law firm suggesting to people that they should contact that law firm immediately and protect their entire estate with offshore investments, so they would never have to pay taxes, and it would all go straight to the kids, or whatever it was. And I thought to myself, if this what we're doing, who do we really think is going to take care of anybody, which started the question.

MR. MULLIN: Well, gee, I'm not an investment counselor, but that would be the last place that I would put my investment. (laughter)

ASSEMBLYWOMAN MURPHY: But I'm just saying, the appeal is--

ASSEMBLYMAN THOMPSON: It's not where it was going. It was the message she's saying that--

MR. MULLIN: Right.

ASSEMBLYMAN THOMPSON: --think of -- put your money away for the kid and don't worry about what happens to you.

ASSEMBLYWOMAN MURPHY: And let someone else take -- and all the rest of the world, people will take care of you.

MR. MULLIN: Credit card debt is at the greatest it's ever been. People do not save, but we are not a saving society. We are being bombarded day in and day out with how to spend our money. How many credit cards-- I get credit cards every day in the mail. I am completely being told to be a better person I need to buy this, that, or the other thing.

ASSEMBLYWOMAN MURPHY: Maybe we should send out ads to buy assisted-living space. Buy yours now at a discount.

MR. MULLIN: But nobody thinks about that. Nobody wants to think about it until it's in their face.

ASSEMBLYWOMAN MURPHY: No, I know. I don't either. I can kid about it. I don't want to do it.

ASSEMBLYMAN THOMPSON: But the Chairwoman's point again, and the testimony we had on Friday, we had an attorney in. He was telling us how these clients all come in and they say, "We want you to tell us how to protect what we have, so we can leave it for our kids." And then after that, they wonder, "How are we going to be taken care of?" They don't worry about taking care of themselves or their estate.

MR. MULLIN: That's right.

ASSEMBLYMAN THOMPSON: They want to leave that for the kids and have the government or somebody or other take care of them.

MR. MULLIN: Well, I think they assume the kids will take care of them.

ASSEMBLYMAN THOMPSON: No. No. They want a government program designed to take care of them after they give away their money.

MR. MULLIN: Oh, I see what you're saying. Oh, I see, in terms of the Medicaid -- becoming eligible for Medicaid. Things like that. There are many like that, but I think there are many more who don't want to be a burden to either the government or their kids, and those are the people you don't hear about. I think, though, that in the future there will be less of a choice because of the limited private sector benefits available due to the history of employment, the type of employment people have had.

ASSEMBLYWOMAN MURPHY: Well, we know what message we have to get out, and we thank you so much for that.

MR. MULLIN: Thank you.

ASSEMBLYWOMAN MURPHY: If you have things you would like to submit to us in writing--


ASSEMBLYWOMAN MURPHY: --Mr. Mullin, please do so.

MR. MULLIN: Yes, I will.

ASSEMBLYWOMAN MURPHY: We would be happy to record them.

MR. MULLIN: Thank you.


Ellen Nathanson, Jewish Family Vocational Services, and I'm going to ask you the same thing, Ellen.

E L L E N N A T H A N S O N: Yes, I will. I'll be very brief--

ASSEMBLYWOMAN MURPHY: If you can kind of summarize, we'd appreciate it.

MS. NATHANSON: --because a lot of what I would have said has been said, so I won't--

How I came about this presentation was to talk to a lot of our clients and our staff and have them talk to the clients. Three issues really came out that I'd like to just highlight: certainly financial concerns, social service, and social needs and technology, which I think is a twist that hasn't been addressed.


MS. NATHANSON: Financially, there were a few different concerns. Certainly, would there be social security for the younger baby boomers, and the issue that many of the younger baby boomers -- those who were born later on in years -- are the same people who have had children very late in life. And so that some of them are going to be paying for their children's education at the same time that their older, adult parents may begin to need them. So they were feeling this anxiety about this financial crunch that they would be in. They are still going to have kids who are in college and grad school and med school.

I have cousins who had children in their mid-40s, and they are going to have elderly parents and young kids. So that whole concept of that sandwich generation really does change with this generation, and the whole issue of whether social security would be there and how many years are they going to have to work in order to be able to get that benefit.

Of course, many of the social and social service needs were mentioned: affordable housing, affordable transportation. Our agency has begun to address some of this with seeking private foundation funding and decided really we're going to the seniors now. I mean, we can't get them to us always; although, we have transportation provided for our social adult day care, but there are people who still can't do it, so we're taking services to assisted-living facilities and to senior housing facilities and offering our services on-site with the assistance of this private foundation. But I think at some point, public funds are going to be needed to do the same thing. If we can't get them to us, then let's get the staff out there to them, and I think that's where we need to look.

And lastly, the issue of technology. The baby boomers are on the cutting edge of this whole computer age, and there are many of my peers who still have not been convinced that the computer is their friend. More and more services are being done over the computer and the ability to communicate with your family that lives far away. When I walked into this building -- I hope there are lots of buildings like this one. I'm retired and could use them. They have a whole room here where they teach computer technology. There's Internet access available. This is state of the art, and this is one of very few. I believe Monmouth County can also, but very few counties have that, and I think this is something that--

I had new math. When I was a kid, I came home from school. My parents didn't know what I was doing in math. Well, the computer is in some ways the same thing, and people need to learn these skills. More and more is going to be done over this computer. We need to make them affordable for people. It's going to make things easier for people who are homebound, and we need to teach them technology. Enough said.

ASSEMBLYWOMAN MURPHY: And we'll have better communication, too.

Did you want to say something relative to the computer system?

ASSEMBLYMAN THOMPSON: Well, of course, we did get a grant for Old Bridge last year to put those computers back there.

ASSEMBLYWOMAN MURPHY: And thank you, Ellen. We appreciate your cooperation with us on this.

Helen Rende, Old Bridge Senior Center, and I'll ask you the same--

H E L E N R E N D E: I shall.

ASSEMBLYWOMAN MURPHY: Thank you very much, Helen.

MS. RENDE: Thank you for having us and welcome once again. I do appreciate Assemblyman Sam Thompson. He is the person who arranged for us to get the grant to put in our computer workstations.

Thank you, Sam.

At this time, you are all very much aware of all the problems and issues that the elderly and their caregivers face. I am not going to talk to that. I think Nancy Piwowar covered that thoroughly, but my focus is on where will you provide the service for the baby boomers.

Today's 75-plus population have lived through the Depression and have certainly have a vastly different outlook than the boomer generation. Most of today's very old are accepting of and easily satisfied with a minimum of service, not even wanting to use that home relief. That had little and were and are great at recycling every little scrap. Nothing was thrown away or wasted. Today's future older generation have a very different mind-set. Our experience has been through immediate gratification. We know what we want. We demand it. We get it. We use it up, or we throw it away, and then we want more. But my question today is, where and how will service be offered to us in our later years?

In speaking with my cohorts, the No. 1 concern or issue in the future is the availability of social security benefits. Secondly, medical or Medicare Health Insurance coverage, prescription medications assistance, and finally, where and how will this information be available, or where will the services be provided? Those of us in the aging field especially see the gap between the elder needs and the actual services that are available. This is growing further and further apart.

Other concerns are the turmoil within the medical insurance field. Elder programs do put a drain on community resources -- the age 100 and over group. Benefit packages are a thing of the past. When the social security age rises, professional people can handle working a few more years, but what of iron workers and ditch diggers?

A few suggestions are tax credits for elder care in the home, as well as family leave. Recognition of and funding for alternative care such as chiropractic, Reiki, and so on. At this time, CentraState Healthcare is offering these kinds of programs, fitness for the mind and body, in their spring calendar.

One vital area that is often neglected is the senior center and its capability of providing services and programs that can be geared to the boomer generation. Recently, the following statistics were reported-- And I won't go through those, but there were 75 million people born between 46 and 64. It's a huge, huge group.

My main focus here is, in your planning do not neglect to consider the critical function of the senior center. It is now and can be the hub to disseminate information on all services for the boomers, their parents, and their children. The centers can and will need to undergo makeovers that will attract this age-group and their parents and serve the dual function of also providing life-sustaining services. What better agency to offer to both. And as each community is so diverse, where better to assess local needs, plan for the future, offer appropriate services, and once again assess to see if we are fulfilling those needs. The senior center is often a lifeline to the community and because of this unique relationship, some creative partnerships can be developed to provide the wholistic programs and projects that will keep our boomer generation, their parents, and their children vivacious and healthy.

So do consider the senior center in your planning. Education was mentioned very often. Use us, look at us. We're all over the state, and we can give you a path to get that information out.

Thank you.

ASSEMBLYWOMAN MURPHY: Thank you very much, Helen.

Mr. Elliot White was going to give us written testimony on alcoholism services. I believe his testimony, then, may be filed with the clerk or coming to us in a written form.

Well, I thank you all very much for being here. We appreciate it enormously.

The taped part of this meeting is now over. The tape machine may be turned off.