S 3995: Creates the New York autism spectrum disorders treatment, training and research council; provides for the powers and duties of the council.

  
  STATE OF NEW YORK ________________________________________________________________________ 3995 2025-2026 Regular Sessions  IN SENATE January 31, 2025 ___________ Introduced by Sens. PARKER, ADDABBO, BAILEY, PERSAUD -- read twice and ordered printed, and when printed to be committed to the Committee on Finance 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 EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD06703-01-5 
 S. 3995 2 1 benefit from a centralized clearinghouse of relevant information, and 2 called for the provision of user-friendly access to such information. 3 Finally, the Task Force reported that collaboratively determining the 4 direction of future ASD research would best utilize available public and 5 private funding. 6 The legislature therefore declares that there is a need to expand 7 treatment, training and research with regard to ASDs -- including the 8 enhancement of efforts to improve access to, and the efficacy of, needed 9 services, support and treatment. 10 § 2. Short title. This act shall be known, and may be cited, as the 11 "New York autism spectrum disorders treatment, training and research 12 act". 13 § 3. The executive law is amended by adding a new article 41-A to read 14 as follows: 15 ARTICLE 41-A 16 NEW YORK AUTISM SPECTRUM DISORDERS 17 TREATMENT, TRAINING AND RESEARCH COUNCIL 18 Section 908. Definitions. 19 908-a. New York autism spectrum disorders treatment, training 20 and research council; purpose and organization. 21 908-b. Functions, powers and duties of the council. 22 § 908. Definitions. When used in this article: 23 1. "autism spectrum disorder" or "ASD" means a neurobiological condi- 24 tion that includes autism, Asperger syndrome, Rett's syndrome, or perva- 25 sive developmental disorder; 26 2. "family" means the parent or legal guardian of an individual diag- 27 nosed with an autism spectrum disorder; and 28 3. "patient" means an individual diagnosed with an autism spectrum 29 disorder. 30 § 908-a. New York autism spectrum disorders treatment, training and 31 research council; purpose and organization. 1. There shall be within the 32 executive department the New York autism spectrum disorders treatment, 33 training and research council, hereinafter council, whose purposes shall 34 be to: 35 (a) develop a coordinated New York state autism spectrum disorders 36 treatment, training and research policy and plan, hereinafter state 37 policy and plan, with respect to the provision of services to patients 38 and their families; 39 (b) review state agency initiatives for their consistency with the 40 state policy and plan; 41 (c) provide a continuing forum for discussion related to the develop- 42 ment and implementation of the state policy and plan; and 43 (d) take the steps enumerated herein to expand and coordinate treat- 44 ment, training and research. 45 2. The council shall be comprised of twenty-eight members as follows: 46 (a) the commissioner of the department of health, the commissioner of 47 the department of labor, the commissioner of the office of children and 48 family services, the commissioner of education, the commissioner of the 49 office of mental health, the commissioner of the office for people with 50 developmental disabilities, the commissioner of the office of temporary 51 and disability assistance, the superintendent of financial services, the 52 chancellor of the state university of New York, the chancellor of the 53 city university of New York, the chair of the council on children and 54 families, the chair of the commission on quality of care and advocacy 55 for persons with disabilities, and the executive director of the disa- 
 S. 3995 3 1 bilities planning council, all of whom shall serve ex officio and who 2 may designate representatives to act on their behalf; 3 (b) seven members appointed by the governor, who shall possess exper- 4 tise in ASDs. At least two appointees shall represent not-for-profit 5 entities with the primary purpose of providing access to education, 6 information and/or services related to the care of patients; and 7 (c) eight members appointed by the governor on the recommendation of 8 the legislative leaders as follows: 9 (1) the temporary president of the senate and the speaker of the 10 assembly shall each recommend three members to the council. The tempo- 11 rary president of the senate and the speaker of the assembly shall each 12 recommend at least one clinical or research expert in the field of ASDs 13 and at least one family member of a patient; and 14 (2) the minority leader of the senate and the minority leader of the 15 assembly shall each recommend one member to the council. 16 3. Vacancies in the membership of the council shall be filled in the 17 manner provided for original appointments. 18 4. The commissioner of the department of health and the commissioner 19 of the office for people with developmental disabilities shall serve, ex 20 officio, as co-chairs of the council. Administrative duties of the coun- 21 cil shall be the responsibility of, and executed by, the department of 22 health and the office for people with developmental disabilities pursu- 23 ant to an agreement effected by the co-chairs. 24 5. Members of the council shall receive no compensation for their 25 services but shall be reimbursed for necessary expenses. 26 6. The council shall meet quarterly, or more frequently if its busi- 27 ness shall require, provided that the community forums required pursuant 28 to section nine hundred eight-b of this article shall constitute a 29 formal meeting of the council. 30 § 908-b. Functions, powers and duties of the council. 1. Not later 31 than one year after the effective date of this article, the council 32 shall conduct community forums to gain input from patients, family 33 members, service providers, expert researchers and other interested 34 parties concerning the development of the state policy and plan required 35 by this section. The council shall then conduct community forums every 36 five years, or more frequently as the council shall determine. Community 37 forums shall be conducted in or around Albany, Binghamton, Buffalo, Long 38 Island, New York City, Northern Metropolitan New York, Plattsburgh, 39 Potsdam, Poughkeepsie, Rochester, Syracuse, and other areas as the coun- 40 cil shall determine. 41 2. The council shall provide the initial report of the state policy 42 and plan required by this section to the governor and the legislature on 43 or before February first, two thousand twenty-seven, and shall provide 44 an update of such policy and plan by February first of every year there- 45 after. The state policy and plan shall include comprehensive informa- 46 tion, findings and recommendations concerning, but not limited to, the 47 following: 48 (a) coordination of services, including: coordinating state services 49 and providing case management; clarifying and streamlining eligibility 50 and intake processes for state service systems; addressing the needs of 51 patients who fail to meet eligibility criteria of state agencies; and 52 uniting public and private agencies in a manner that will best serve 53 patients and their families. In assessing the strengths and gaps in 54 services for patients and their families, the state policy and plan 55 shall include evaluations and recommendations by region; 
 S. 3995 4 1 (b) early identification and intervention, including: standardizing 2 ASD screening practices; training educators, medical professionals and 3 other service providers to recognize and treat ASDs; and promoting early 4 childhood screening by primary care physicians; 5 (c) lifelong service delivery, including: promoting access to 6 evidence-based services for patients of all ages; establishing treatment 7 guidelines and training programs for caregivers; providing residential 8 supports to adult patients; and implementing employment training and 9 post-school transitional services; 10 (d) family support, including: expanding respite care options and 11 implementing other means to reduce strain on families; 12 (e) increased dissemination of information, including: increasing ASD 13 awareness programs; distributing best practices to educators, medical 14 professionals and other service providers; continuing the Task Force's 15 efforts to create a centralized hub of information on ASDs through the 16 launch of an online initiative for Adults and Children on The Spectrum 17 (New York ACTS); and enhancing support for patients and families in 18 non-English speaking communities; 19 (f) coordinated research, including: utilizing available research 20 funds in the most effective and efficient manner; translating results 21 into improved treatment practices; distributing results to educators, 22 medical professionals and other service providers; and uniting ASD 23 researchers in seeking to achieve a better understanding of ASDs; 24 (g) financing training, treatment and research in the state, includ- 25 ing: making financing more efficient and effective; strengthening family 26 services and supports; providing a seamless spectrum of services irre- 27 spective of agency jurisdiction; identifying existing and potential 28 sources of funding; and partnering with private individuals, foundations 29 and other entities; and 30 (h) a statistical analysis of data concerning the prevalence of autism 31 in New York state, both statewide and by region; a listing of available 32 and proposed programs, and their availability by region; a listing of 33 available and proposed expenditures, and their availability by region; a 34 listing of financial resources available for the provision of services 35 to patients and their families; and such other information as the coun- 36 cil shall deem relevant. 37 3. Except where otherwise prohibited by state statute or by federal 38 law, rule or requirement, the plan shall be binding upon member state 39 agencies, which shall promulgate regulations and take such other actions 40 required to effectuate the state policy and plan. 41 4. The council shall select and designate regional New York Centers on 42 Autism and Related Disabilities, hereinafter NYCARD facilities, for the 43 purpose of identifying, disseminating, and assisting in the implementa- 44 tion of evidence-based practices to serve patients and their families. 45 (a) The council shall establish criteria for the selection and desig- 46 nation of NYCARD facilities, which shall include an assessment of appli- 47 cant facilities: 48 (1) participation in training teachers, parents and professionals; 49 (2) level of non-state financial assistance available to support oper- 50 ations; 51 (3) understanding of program goals and objectives articulated by the 52 council; 53 (4) proposed geographical area to be served; 54 (5) proposed work plan and staff expertise; 
 S. 3995 5 1 (6) relationship with entities or communities to be served, evidenced 2 by such factors as representation on boards of directors or advisory 3 committees; and 4 (7) such other factors as the council shall determine. 5 (b) The council shall develop a request for proposals, a request for 6 qualifications, or a request for expressions of interest as it deems 7 appropriate; and it shall accept applications in response for desig- 8 nation as a NYCARD facility from not-for-profit, academic and research 9 entities in the state. Within eighteen months after the effective date 10 of this article the council shall: 11 (1) designate as NYCARD facilities: federal Studies to Advance Autism 12 Research and Treatment (STAART) Network programs located within the 13 state, the Cody Center for Autism and Developmental Disabilities at 14 Stony Brook University, and the Center for Autism and Related Disabili- 15 ties at the University at Albany; 16 (2) expand current NYCARD facilities located in or around Albany, 17 Buffalo, New York City, Northern Metropolitan New York and Rochester; 18 and 19 (3) create one or more NYCARD facilities in or around Binghamton, 20 Plattsburgh, Potsdam, Poughkeepsie, Syracuse and such other areas as the 21 council shall determine. 22 (c) NYCARD facilities shall provide training, referral and information 23 for parents, educators, medical professionals and other service provid- 24 ers, including: 25 (1) information and referral; 26 (2) education and training; 27 (3) technical assistance and consultation; 28 (4) provision of, or referral to, family support groups; 29 (5) dissemination of evidence-based models of practice for effective 30 service delivery; and 31 (6) such other services as the council shall require. 32 (d) Where feasible, NYCARD facilities shall also provide treatment- 33 based services including, but not limited to, case consultation and 34 clinical services. 35 (e) The council is hereby authorized to contract for services with 36 designated NYCARD facilities pursuant to this subdivision and to provide 37 grants pursuant to such contracts within amounts designated specifically 38 therefore. The council may act through one or more member state agen- 39 cies, which it shall designate by majority vote, for administration of 40 such contracts and grants. Insofar as possible, where provision of such 41 services is paid for, in whole or in part, through a contract with a 42 state agency, the cost charged to recipients shall be reduced pro rata. 43 Contracts with NYCARD facilities shall vary depending on the services to 44 be provided, and any such contract shall require that funding provided 45 by, through or pursuant to this subdivision, not be used to offset 46 existing expenditures for the same or similar programs. 47 5. NYCARD facilities, as well as organizations receiving federal or 48 non-state grant funds for research, may receive grants pursuant to this 49 subdivision for research within amounts designated specifically there- 50 fore. The council is hereby authorized to administer such grants and 51 may act through one or more member state agencies which it shall desig- 52 nate by majority vote. Such grants may allow for the enhancement of 53 activities funded from such non-state sources that are already being 54 undertaken by such organizations, including: the continuation of ongoing 55 research; the provision of technical information; guidance for practi- 56 tioners on ASD care strategies, therapies, medications and other 
 S. 3995 6 1 related matters; collaborations with practitioners, schools and 2 networks; and other activities the council deems appropriate. Such 3 grants may be used for any purpose in furtherance of such activities 4 including, without limitation, the purchase of equipment and supplies, 5 payment of salaries, or other activities and purposes as approved by the 6 council. 7 § 4. This act shall take effect immediately.