Assemblywoman VALERIE VAINIERI HUTTLE
District 37 (Bergen)
Assemblyman UPENDRA J. CHIVUKULA
District 17 (Middlesex and Somerset)
Assemblyman RUBEN J. RAMOS, JR.
District 33 (Hudson)
Assemblywomen Rodriguez, Jasey, Assemblymen Fuentes, Coutinho, Senators Gordon, Greenstein and Beck
Requires DHS to collect and disseminate data about persons with developmental disabilities.
CURRENT VERSION OF TEXT
As reported by the Assembly Appropriations Committee on June 13, 2011, with amendments.
An Act concerning persons with developmental disabilities and supplementing chapter 6D of Title 30 of the Revised Statutes.
Be It Enacted by the Senate and General Assembly of the State of New Jersey:
1. The Legislature finds and declares that:
a. Reliable and current data about the service needs of persons with developmental disabilities who are eligible for services from the Division of Developmental Disabilities in the Department of Human Services is fundamental to the division's ability to plan effectively to meet those needs;
b. Similarly, in order to make appropriate decisions about State funding for these services, it is important to understand the needs of persons with developmental disabilities served by the division;
c. Information about service needs is also essential for service providers as they seek to expand services, acquire or build infrastructure where needed, make services available at the time they are needed, and ensure that the services they provide are compatible with the needs of persons with developmental disabilities residing in their particular service areas;
d. Additionally, persons with developmental disabilities and their family members and guardians need access to current data so that they can develop informed expectations about the system that provides services for persons with developmental disabilities;
e. As this system evolves into one in which more persons with developmental disabilities and their family members and guardians play a larger role in obtaining necessary support services in the community, it is critical to create a truly transparent system on which persons with developmental disabilities and their family members and guardians can rely, and which they can trust; and
f. In order to ensure that the State and persons with developmental disabilities and their family members and guardians have reliable data about the service needs of persons with developmental disabilities and that such data can be made available to those who need to factor that information into their decision-making, planning, funding, and expectations for services, it is the policy of the State to provide for the collection and dissemination of data on persons with developmental disabilities.
2. As used in this act:
"Department" means the Department of Human Services.
"Division" means the Division of Developmental Disabilities in the Department of Human Services.
"Eligible person with a developmental disability" or "eligible person" means an eligible 1[developmentally disabled]1 person 1with a developmental disability1 as defined in section 3 of P.L.1985, c.145 (C.30:6D-25).
"Services" means services as defined in section 3 of P.L.1985, c.145 (C.30:6D-25).
3. a. The Division of Developmental Disabilities shall collect 1,1 and 1when practical1 maintain a database of 1,1 information about eligible persons with developmental disabilities pursuant to this section.
b. The division shall, within 12 months of the effective date of this act, collect and maintain data as specified in this section on persons declared eligible persons as of the effective date of this act. In the case of a person with a developmental disability who becomes eligible for services after the effective date of this act, the division shall collect the data no later than 60 days after the person is determined eligible for services by the division.
The data to be collected 1,1 and 1when practical1 maintained 1,1 for each eligible person shall include:
(1) the person's name and contact information, guardian, if applicable, and any primary caregivers;
(2) the person's age, gender, race or ethnicity, and disability or diagnosis, as applicable;
(3) a needs assessment categorized, at a minimum, by the person's need for residential services, employment or day support services, family support services, medical support services, and behavioral support services; 1and1
(4) 1[a description of the services the person is currently receiving, including: in the case of residential services, whether those services are provided in a developmental center, group home, supervised apartment, community care residence, nursing home, or out-of-State placement; in the case of day support services, the type of day support service; and in the case of an individual budget to purchase services, the amount of that budget and the services that are being purchased with the funds from that budget;
(5) a list of all services from the division for which the person is currently eligible;
(6)]1 a list of services that the person or his parent or guardian has indicated the person would like to receive 1[but cannot access]1, including residential and day support services 1[, and an explanation of the reason the person cannot access the service;
(7) an anticipated change in the level of need of the person over the next 10 years and an anticipated date when those changes can be expected to occur; and
(8) the age and overall health status of any primary caregivers of the person, and the length of time a caregiver anticipates being able to continue to provide services to the person]1.
c. The division shall ensure that eligible persons are re-assessed as to their needs and services 1[at least every five years] as needed1.
4. The division shall annually notify 1[an eligible person by mail] , in writing, persons receiving services1 of the following:
a. the services the person is currently receiving from the division and, in the case of an individual budget to purchase services, the amount of that budget and the services that are being purchased with the funds from that budget;
b. the person's status on a waiting list, if any, and how many persons with developmental disabilities on the list are expected to be served in the next 12 months;
c. 1[the projected needs of the person over the next 10 years, as stated in the most recent assessment of the person;
d.]1 the manner in which the person can easily correct or update, as applicable: the person's contact information; information concerning how the person is spending funds in an individual budget, if any; the person's expected future service needs; and any other relevant information that requires updating; and
1[e.] d.1 information about where the person with a developmental disability or family member or guardian can find information about services for persons with developmental disabilities, including the link to the department's official website.
5. The division shall annually publish a report, to be made available on the department's website, containing non-identifying aggregate data about eligible persons. The report shall, at a minimum, include:
a. the number of eligible persons, tabulated by county and other demographic information, including, but not limited to, age, gender, race or ethnicity, and disability or diagnosis, as applicable;
b. for each developmental center: the number of persons with developmental disabilities residing in the developmental center who have expressed 1to the division1 a desire to reside in the community but are still awaiting such placement; the number of persons who require 1[medical or]1 behavioral supports 1[, or both,]1 to reside in the community; and the number of persons who are currently residing in a developmental center because they have mobility impairments and have been unable to find accessible housing;
c. an explanation of how the division determines to place an eligible person on a waiting list maintained by the division, what criteria determine a person's priority level and ranking within that priority level on the list, and how a person is selected from the list to receive services;
d. for each waiting list maintained by the division, within each county:
(1) the number of people who are waiting for: residential services; employment or day support services; family support services and, if so, which supports; 1[medical support services;]1 and behavioral support services; and
(2) the 1[median length of time that persons with developmental disabilities have been waiting for services; the percentage of persons with developmental disabilities who are assigned to the different priority levels of all applicable waiting lists; and the number of persons added to the lists in the preceding 12 months] year in which persons requested placement on any division-maintained waiting list1;
e. the number of eligible persons served in each residential setting during the preceding 12 months, including, but not limited to, a developmental center, family member's home, group home, supervised apartment, community care residence, nursing home, or out-of-State placement 1[, and the number of persons with developmental disabilities who moved from one setting to another, tabulated by setting and the reason for the move]1;
f. tabulated by county: the number of eligible persons who are expected to transition from receiving services from a school district to receiving services from the division for each 1[of the three subsequent years] year1; the expected service needs of these persons; and the total projected cost of services for these persons 1[, including those persons who are in out-of-State placements through a school district and the number of persons in such placements]1;
g. during the preceding 12 months, tabulated by county:
(1) the number of eligible persons who were removed from 1[a division] any division-maintained1 waiting list; 1[the services for which each person was waiting;]1 the reason each person was removed from the list; 1[the services each person had been receiving, including placement in a developmental center; the services the person is now receiving;]1 and how long each person had been waiting for services or supports before being removed from the list;
(2) the number of eligible persons who were classified as an 1["emergency," the amount of time it took to provide them with services, and the percentage who received certain services, including, but not limited to, residential services, in-home behavioral support services, and medical support services] "emergency"1;
(3) for those persons who received residential services, the percentage who received such services in a developmental center, group home, supervised apartment, community care residence, nursing home, out-of-State placement, or any other residential setting;
(4) the number of eligible persons who were placed in a nursing home and their age when placed, categorized by the reason for such placement;
(5) the number of eligible persons who were placed in a developmental center, categorized by the reason for such placement; 1and1
(6) the number of eligible persons who previously but no longer receive services from the division1[, and the reason for no longer receiving such services, categorized by event, including, but not limited to, relocation out-of-State or death, or by some other reason;
(7) the number of eligible persons who reported to the division that they were unable to access needed services and the reason, including, but not limited to, lack of funding, unavailability of services in the person's community, and lack of transportation]1; and
h. an explanation of the current procedures and criteria used to admit an eligible person into a 1[nursing home or]1 developmental center.
16. The department shall report to the Governor, and to the Legislature pursuant to section 2 of P.L.1991, c.164 (C.52:14-19.1), two years after the effective date of this act as to: the progress of the data collection and reporting required pursuant to this act; and the viability of including additional data within its data collection and reporting practices.1
17. The Commissioner of Human Services, pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.), shall adopt rules and regulations to effectuate the purposes of sections 3 and 4 of this act.1
1[6.] 8.1 This act shall take effect on the first day of the 1[seventh] 13th1 month next following the date of enactment 1, except that the Commissioner of Human Services may take such anticipatory administrative action in advance thereof as shall be necessary for the implementation of this act1.