STATE OF NEW YORK
________________________________________________________________________
9868
IN ASSEMBLY
April 24, 2024
___________
Introduced by M. of A. SANTABARBARA -- read once and referred to the
Committee on Governmental Operations
AN ACT to amend the executive law, in relation to creating the New York
autism spectrum disorders treatment, training and research council and
providing for the powers and duties of the council
The People of the State of New York, represented in Senate and Assem-bly, do enact as follows:
1 Section 1. Intent. The legislature hereby finds and declares that
2 autism spectrum disorders, hereinafter ASDs, currently affect approxi-
3 mately one in 110 children and are considered to be an "urgent public
4 health concern" by the Centers for Disease Control and Prevention.
5 The legislature further finds that New York state has not responded
6 sufficiently to this crisis. In its 2010 report, the New York state
7 Interagency Task Force on Autism, hereinafter Task Force, identified
8 five primary needs of the growing population of New York citizens
9 affected by ASDs: coordination of state services, early identification,
10 lifelong service delivery, increased dissemination of information, and
11 coordination of research efforts. First, as a collaborative effort of 11
12 independent state agencies that each serve individuals impacted by ASDs,
13 the Task Force itself exemplifies the need for coordination of research,
14 treatment and training responsibilities. Second, while the Task Force
15 determined that early identification and intervention were crucial to
16 minimizing the symptoms and impact of ASDs, it reported that only eight
17 percent of pediatricians routinely screen for ASDs and approximately 30
18 percent of children with ASDs do not receive the early intervention
19 services provided by the New York State Department of Health. Third,
20 recognizing that the thousands of children diagnosed with ASDs will soon
21 age out of the state's educational system, the Task Force noted a dearth
22 of post-secondary training and transitional services. Fourth, the Task
23 Force determined that individuals and families affected by ASDs would
24 benefit from a centralized clearinghouse of relevant information, and
25 called for the provision of user-friendly access to such information.
26 Finally, the Task Force reported that collaboratively determining the
27 direction of future ASD research would best utilize available public and
28 private funding.
29 The legislature therefore declares that there is a need to expand
30 treatment, training and research with regard to ASDs -- including the
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD07764-01-3
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1 enhancement of efforts to improve access to, and the efficacy of, needed
2 services, support and treatment.
3 § 2. Short title. This act shall be known, and may be cited, as the
4 "New York autism spectrum disorders treatment, training and research
5 act".
6 § 3. The executive law is amended by adding a new article 41-A to read
7 as follows:
8 ARTICLE 41-A
9 NEW YORK AUTISM SPECTRUM DISORDERS
10 TREATMENT, TRAINING AND RESEARCH COUNCIL
11 Section 908. Definitions.
12 908-a. New York autism spectrum disorders treatment, training
13 and research council; purpose and organization.
14 908-b. Functions, powers and duties of the council.
15 § 908. Definitions. When used in this article:
16 1. "autism spectrum disorder" or "ASD" means a neurobiological condi-
17 tion that includes autism, Asperger syndrome, Rett's syndrome, or perva-
18 sive developmental disorder;
19 2. "family" means the parent or legal guardian of an individual diag-
20 nosed with an autism spectrum disorder; and
21 3. "patient" means an individual diagnosed with an autism spectrum
22 disorder.
23 § 908-a. New York autism spectrum disorders treatment, training and
24 research council; purpose and organization. 1. There shall be within the
25 executive department the New York autism spectrum disorders treatment,
26 training and research council, hereinafter council, whose purposes shall
27 be to:
28 (a) develop a coordinated New York state autism spectrum disorders
29 treatment, training and research policy and plan, hereinafter state
30 policy and plan, with respect to the provision of services to patients
31 and their families;
32 (b) review state agency initiatives for their consistency with the
33 state policy and plan;
34 (c) provide a continuing forum for discussion related to the develop-
35 ment and implementation of the state policy and plan; and
36 (d) take the steps enumerated herein to expand and coordinate treat-
37 ment, training and research.
38 2. The council shall be comprised of twenty-eight members as follows:
39 (a) the commissioner of the department of health, the commissioner of
40 the department of labor, the commissioner of the office of children and
41 family services, the commissioner of education, the commissioner of the
42 office of mental health, the commissioner of the office for people with
43 developmental disabilities, the commissioner of the office of temporary
44 and disability assistance, the superintendent of financial services, the
45 chancellor of the state university of New York, the chancellor of the
46 city university of New York, the chair of the council on children and
47 families, the chair of the commission on quality of care and advocacy
48 for persons with disabilities, and the executive director of the disa-
49 bilities planning council, all of whom shall serve ex officio and who
50 may designate representatives to act on their behalf;
51 (b) seven members appointed by the governor, who shall possess exper-
52 tise in ASDs. At least two appointees shall represent not-for-profit
53 entities with the primary purpose of providing access to education,
54 information and/or services related to the care of patients; and
55 (c) eight members appointed by the governor on the recommendation of
56 the legislative leaders as follows:
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1 (1) the temporary president of the senate and the speaker of the
2 assembly shall each recommend three members to the council. The tempo-
3 rary president of the senate and the speaker of the assembly shall each
4 recommend at least one clinical or research expert in the field of ASDs
5 and at least one family member of a patient; and
6 (2) the minority leader of the senate and the minority leader of the
7 assembly shall each recommend one member to the council.
8 3. Vacancies in the membership of the council shall be filled in the
9 manner provided for original appointments.
10 4. The commissioner of the department of health and the commissioner
11 of the office for people with developmental disabilities shall serve, ex
12 officio, as co-chairs of the council. Administrative duties of the coun-
13 cil shall be the responsibility of, and executed by, the department of
14 health and the office for people with developmental disabilities pursu-
15 ant to an agreement effected by the co-chairs.
16 5. Members of the council shall receive no compensation for their
17 services but shall be reimbursed for necessary expenses.
18 6. The council shall meet quarterly, or more frequently if its busi-
19 ness shall require, provided that the community forums required pursuant
20 to section nine hundred eight-b of this article shall constitute a
21 formal meeting of the council.
22 § 908-b. Functions, powers and duties of the council. 1. Not later
23 than one year after the effective date of this article, the council
24 shall conduct community forums to gain input from patients, family
25 members, service providers, expert researchers and other interested
26 parties concerning the development of the state policy and plan required
27 by this section. The council shall then conduct community forums every
28 five years, or more frequently as the council shall determine. Community
29 forums shall be conducted in or around Albany, Binghamton, Buffalo, Long
30 Island, New York City, Northern Metropolitan New York, Plattsburgh,
31 Potsdam, Poughkeepsie, Rochester, Syracuse, and other areas as the coun-
32 cil shall determine.
33 2. The council shall provide the initial report of the state policy
34 and plan required by this section to the governor and the legislature on
35 or before February first, two thousand twenty-five, and shall provide an
36 update of such policy and plan by February first of every year thereaft-
37 er. The state policy and plan shall include comprehensive information,
38 findings and recommendations concerning, but not limited to, the follow-
39 ing:
40 (a) coordination of services, including: coordinating state services
41 and providing case management; clarifying and streamlining eligibility
42 and intake processes for state service systems; addressing the needs of
43 patients who fail to meet eligibility criteria of state agencies; and
44 uniting public and private agencies in a manner that will best serve
45 patients and their families. In assessing the strengths and gaps in
46 services for patients and their families, the state policy and plan
47 shall include evaluations and recommendations by region;
48 (b) early identification and intervention, including: standardizing
49 ASD screening practices; training educators, medical professionals and
50 other service providers to recognize and treat ASDs; and promoting early
51 childhood screening by primary care physicians;
52 (c) lifelong service delivery, including: promoting access to
53 evidence-based services for patients of all ages; establishing treatment
54 guidelines and training programs for caregivers; providing residential
55 supports to adult patients; and implementing employment training and
56 post-school transitional services;
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1 (d) family support, including: expanding respite care options and
2 implementing other means to reduce strain on families;
3 (e) increased dissemination of information, including: increasing ASD
4 awareness programs; distributing best practices to educators, medical
5 professionals and other service providers; continuing the Task Force's
6 efforts to create a centralized hub of information on ASDs through the
7 launch of an online initiative for Adults and Children on The Spectrum
8 (New York ACTS); and enhancing support for patients and families in
9 non-English speaking communities;
10 (f) coordinated research, including: utilizing available research
11 funds in the most effective and efficient manner; translating results
12 into improved treatment practices; distributing results to educators,
13 medical professionals and other service providers; and uniting ASD
14 researchers in seeking to achieve a better understanding of ASDs;
15 (g) financing training, treatment and research in the state, includ-
16 ing: making financing more efficient and effective; strengthening family
17 services and supports; providing a seamless spectrum of services irre-
18 spective of agency jurisdiction; identifying existing and potential
19 sources of funding; and partnering with private individuals, foundations
20 and other entities; and
21 (h) a statistical analysis of data concerning the prevalence of autism
22 in New York state, both statewide and by region; a listing of available
23 and proposed programs, and their availability by region; a listing of
24 available and proposed expenditures, and their availability by region; a
25 listing of financial resources available for the provision of services
26 to patients and their families; and such other information as the coun-
27 cil shall deem relevant.
28 3. Except where otherwise prohibited by state statute or by federal
29 law, rule or requirement, the plan shall be binding upon member state
30 agencies, which shall promulgate regulations and take such other actions
31 required to effectuate the state policy and plan.
32 4. The council shall select and designate regional New York Centers on
33 Autism and Related Disabilities, hereinafter NYCARD facilities, for the
34 purpose of identifying, disseminating, and assisting in the implementa-
35 tion of evidence-based practices to serve patients and their families.
36 (a) The council shall establish criteria for the selection and desig-
37 nation of NYCARD facilities, which shall include an assessment of appli-
38 cant facilities:
39 (1) participation in training teachers, parents and professionals;
40 (2) level of non-state financial assistance available to support oper-
41 ations;
42 (3) understanding of program goals and objectives articulated by the
43 council;
44 (4) proposed geographical area to be served;
45 (5) proposed work plan and staff expertise;
46 (6) relationship with entities or communities to be served, evidenced
47 by such factors as representation on boards of directors or advisory
48 committees; and
49 (7) such other factors as the council shall determine.
50 (b) The council shall develop a request for proposals, a request for
51 qualifications, or a request for expressions of interest as it deems
52 appropriate; and it shall accept applications in response for desig-
53 nation as a NYCARD facility from not-for-profit, academic and research
54 entities in the state. Within eighteen months after the effective date
55 of this article the council shall:
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1 (1) designate as NYCARD facilities: federal Studies to Advance Autism
2 Research and Treatment (STAART) Network programs located within the
3 state, the Cody Center for Autism and Developmental Disabilities at
4 Stony Brook University, and the Center for Autism and Related Disabili-
5 ties at the University at Albany;
6 (2) expand current NYCARD facilities located in or around Albany,
7 Buffalo, New York City, Northern Metropolitan New York and Rochester;
8 and
9 (3) create one or more NYCARD facilities in or around Binghamton,
10 Plattsburgh, Potsdam, Poughkeepsie, Syracuse and such other areas as the
11 council shall determine.
12 (c) NYCARD facilities shall provide training, referral and information
13 for parents, educators, medical professionals and other service provid-
14 ers, including:
15 (1) information and referral;
16 (2) education and training;
17 (3) technical assistance and consultation;
18 (4) provision of, or referral to, family support groups;
19 (5) dissemination of evidence-based models of practice for effective
20 service delivery; and
21 (6) such other services as the council shall require.
22 (d) Where feasible, NYCARD facilities shall also provide treatment-
23 based services including, but not limited to, case consultation and
24 clinical services.
25 (e) The council is hereby authorized to contract for services with
26 designated NYCARD facilities pursuant to this subdivision and to provide
27 grants pursuant to such contracts within amounts designated specifically
28 therefore. The council may act through one or more member state agen-
29 cies, which it shall designate by majority vote, for administration of
30 such contracts and grants. Insofar as possible, where provision of such
31 services is paid for, in whole or in part, through a contract with a
32 state agency, the cost charged to recipients shall be reduced pro rata.
33 Contracts with NYCARD facilities shall vary depending on the services to
34 be provided, and any such contract shall require that funding provided
35 by, through or pursuant to this subdivision, not be used to offset
36 existing expenditures for the same or similar programs.
37 5. NYCARD facilities, as well as organizations receiving federal or
38 non-state grant funds for research, may receive grants pursuant to this
39 subdivision for research within amounts designated specifically there-
40 fore. The council is hereby authorized to administer such grants and
41 may act through one or more member state agencies which it shall desig-
42 nate by majority vote. Such grants may allow for the enhancement of
43 activities funded from such non-state sources that are already being
44 undertaken by such organizations, including: the continuation of ongoing
45 research; the provision of technical information; guidance for practi-
46 tioners on ASD care strategies, therapies, medications and other
47 related matters; collaborations with practitioners, schools and
48 networks; and other activities the council deems appropriate. Such
49 grants may be used for any purpose in furtherance of such activities
50 including, without limitation, the purchase of equipment and supplies,
51 payment of salaries, or other activities and purposes as approved by the
52 council.
53 § 4. This act shall take effect immediately.
