Bill Text: NY S05077 | 2021-2022 | General Assembly | Introduced


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

Spectrum: Partisan Bill (Democrat 5-0)

Status: (Introduced - Dead) 2022-01-05 - REFERRED TO FINANCE [S05077 Detail]

Download: New_York-2021-S05077-Introduced.html



                STATE OF NEW YORK
        ________________________________________________________________________

                                          5077

                               2021-2022 Regular Sessions

                    IN SENATE

                                    February 23, 2021
                                       ___________

        Introduced  by  Sens.  PARKER, ADDABBO, BAILEY, KENNEDY, 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.
                                                                   LBD09267-01-1

        S. 5077                             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.  This  act  shall  be  known, and may be cited, as the "New York
    11  autism spectrum disorders treatment, training and research act".
    12    § 3. The executive law is amended by adding a new article 41-A to read
    13  as follows:
    14                                ARTICLE 41-A
    15                     NEW YORK AUTISM SPECTRUM DISORDERS
    16                  TREATMENT, TRAINING AND RESEARCH COUNCIL
    17  Section 908. Definitions.
    18          908-a. New York autism spectrum  disorders  treatment,  training
    19                   and research council; purpose and organization.
    20          908-b. Functions, powers and duties of the council.
    21    § 908. Definitions. When used in this article:
    22    1.  "autism spectrum disorder" or "ASD" means a neurobiological condi-
    23  tion that includes autism, Asperger syndrome, Rett's syndrome, or perva-
    24  sive developmental disorder;
    25    2. "family" means the parent or legal guardian of an individual  diag-
    26  nosed with an autism spectrum disorder; and
    27    3.  "patient"  means  an  individual diagnosed with an autism spectrum
    28  disorder.
    29    § 908-a. New York autism spectrum disorders  treatment,  training  and
    30  research council; purpose and organization. 1. There shall be within the
    31  executive  department  the New York autism spectrum disorders treatment,
    32  training and research council, hereinafter council, whose purposes shall
    33  be to:
    34    (a) develop a coordinated New York  state  autism  spectrum  disorders
    35  treatment,  training  and  research  policy  and plan, hereinafter state
    36  policy and plan, with respect to the provision of services  to  patients
    37  and their families;
    38    (b)  review  state  agency  initiatives for their consistency with the
    39  state policy and plan;
    40    (c) provide a continuing forum for discussion related to the  develop-
    41  ment and implementation of the state policy and plan; and
    42    (d)  take  the steps enumerated herein to expand and coordinate treat-
    43  ment, training and research.
    44    2. The council shall be comprised of twenty-eight members as follows:
    45    (a) the commissioner of the department of health, the commissioner  of
    46  the  department of labor, the commissioner of the office of children and
    47  family services, the commissioner of education, the commissioner of  the
    48  office  of mental health, the commissioner of the office for people with
    49  developmental disabilities, the commissioner of the office of  temporary
    50  and disability assistance, the superintendent of financial services, the
    51  chancellor  of  the  state university of New York, the chancellor of the
    52  city university of New York, the chair of the council  on  children  and
    53  families,  the  chair  of the commission on quality of care and advocacy
    54  for persons with disabilities, and the executive director of  the  disa-
    55  bilities  planning  council,  all of whom shall serve ex officio and who
    56  may designate representatives to act on their behalf;

        S. 5077                             3

     1    (b) seven members appointed by the governor, who shall possess  exper-
     2  tise  in  ASDs.  At  least two appointees shall represent not-for-profit
     3  entities with the primary purpose  of  providing  access  to  education,
     4  information and/or services related to the care of patients; and
     5    (c)  eight  members appointed by the governor on the recommendation of
     6  the legislative leaders as follows:
     7    (1) the temporary president of the  senate  and  the  speaker  of  the
     8  assembly  shall  each recommend three members to the council. The tempo-
     9  rary president of the senate and the speaker of the assembly shall  each
    10  recommend  at least one clinical or research expert in the field of ASDs
    11  and at least one family member of a patient; and
    12    (2) the minority leader of the senate and the minority leader  of  the
    13  assembly shall each recommend one member to the council.
    14    3.  Vacancies  in the membership of the council shall be filled in the
    15  manner provided for original appointments.
    16    4. The commissioner of the department of health and  the  commissioner
    17  of the office for people with developmental disabilities shall serve, ex
    18  officio, as co-chairs of the council. Administrative duties of the coun-
    19  cil  shall  be the responsibility of, and executed by, the department of
    20  health and the office for people with developmental disabilities  pursu-
    21  ant to an agreement effected by the co-chairs.
    22    5.  Members  of  the  council  shall receive no compensation for their
    23  services but shall be reimbursed for necessary expenses.
    24    6. The council shall meet quarterly, or more frequently if  its  busi-
    25  ness shall require, provided that the community forums required pursuant
    26  to  section  nine  hundred  eight-b  of  this article shall constitute a
    27  formal meeting of the council.
    28    § 908-b. Functions, powers and duties of the  council.  1.  Not  later
    29  than  one  year  after  the  effective date of this article, the council
    30  shall conduct community forums  to  gain  input  from  patients,  family
    31  members,  service  providers,  expert  researchers  and other interested
    32  parties concerning the development of the state policy and plan required
    33  by this section. The council shall then conduct community  forums  every
    34  five years, or more frequently as the council shall determine. Community
    35  forums shall be conducted in or around Albany, Binghamton, Buffalo, Long
    36  Island,  New  York  City,  Northern  Metropolitan New York, Plattsburgh,
    37  Potsdam, Poughkeepsie, Rochester, Syracuse, and other areas as the coun-
    38  cil shall determine.
    39    2. The council shall provide the initial report of  the  state  policy
    40  and plan required by this section to the governor and the legislature on
    41  or  before  February first, two thousand twenty-three, and shall provide
    42  an update of such policy and plan by February first of every year there-
    43  after. The state policy and plan shall  include  comprehensive  informa-
    44  tion,  findings  and recommendations concerning, but not limited to, the
    45  following:
    46    (a) coordination of services, including: coordinating  state  services
    47  and  providing  case management; clarifying and streamlining eligibility
    48  and intake processes for state service systems; addressing the needs  of
    49  patients  who  fail  to meet eligibility criteria of state agencies; and
    50  uniting public and private agencies in a manner  that  will  best  serve
    51  patients  and  their  families.  In  assessing the strengths and gaps in
    52  services for patients and their families,  the  state  policy  and  plan
    53  shall include evaluations and recommendations by region;
    54    (b)  early  identification  and intervention, including: standardizing
    55  ASD screening practices; training educators, medical  professionals  and

        S. 5077                             4

     1  other service providers to recognize and treat ASDs; and promoting early
     2  childhood screening by primary care physicians;
     3    (c)   lifelong   service  delivery,  including:  promoting  access  to
     4  evidence-based services for patients of all ages; establishing treatment
     5  guidelines and training programs for caregivers;  providing  residential
     6  supports  to  adult  patients;  and implementing employment training and
     7  post-school transitional services;
     8    (d) family support, including:  expanding  respite  care  options  and
     9  implementing other means to reduce strain on families;
    10    (e)  increased dissemination of information, including: increasing ASD
    11  awareness programs; distributing best practices  to  educators,  medical
    12  professionals  and  other service providers; continuing the Task Force's
    13  efforts to create a centralized hub of information on ASDs  through  the
    14  launch  of  an online initiative for Adults and Children on The Spectrum
    15  (New York ACTS); and enhancing support  for  patients  and  families  in
    16  non-English speaking communities;
    17    (f)  coordinated  research,  including:   utilizing available research
    18  funds in the most effective and efficient  manner;  translating  results
    19  into  improved  treatment  practices; distributing results to educators,
    20  medical professionals and  other  service  providers;  and  uniting  ASD
    21  researchers in seeking to achieve a better understanding of ASDs;
    22    (g)  financing  training, treatment and research in the state, includ-
    23  ing: making financing more efficient and effective; strengthening family
    24  services and supports; providing a seamless spectrum of  services  irre-
    25  spective  of  agency  jurisdiction;  identifying  existing and potential
    26  sources of funding; and partnering with private individuals, foundations
    27  and other entities; and
    28    (h) a statistical analysis of data concerning the prevalence of autism
    29  in New York state, both statewide and by region; a listing of  available
    30  and  proposed  programs,  and their availability by region; a listing of
    31  available and proposed expenditures, and their availability by region; a
    32  listing of financial resources available for the provision  of  services
    33  to  patients and their families; and such other information as the coun-
    34  cil shall deem relevant.
    35    3. Except where otherwise prohibited by state statute  or  by  federal
    36  law,  rule  or  requirement, the plan shall be binding upon member state
    37  agencies, which shall promulgate regulations and take such other actions
    38  required to effectuate the state policy and plan.
    39    4. The council shall select and designate regional New York Centers on
    40  Autism and Related Disabilities, hereinafter NYCARD facilities, for  the
    41  purpose  of identifying, disseminating, and assisting in the implementa-
    42  tion of evidence-based practices to serve patients and their families.
    43    (a) The council shall establish criteria for the selection and  desig-
    44  nation of NYCARD facilities, which shall include an assessment of appli-
    45  cant facilities:
    46    (1) participation in training teachers, parents and professionals;
    47    (2) level of non-state financial assistance available to support oper-
    48  ations;
    49    (3)  understanding  of program goals and objectives articulated by the
    50  council;
    51    (4) proposed geographical area to be served;
    52    (5) proposed work plan and staff expertise;
    53    (6) relationship with entities or communities to be served,  evidenced
    54  by  such  factors  as  representation on boards of directors or advisory
    55  committees; and
    56    (7) such other factors as the council shall determine.

        S. 5077                             5

     1    (b) The council shall develop a request for proposals, a  request  for
     2  qualifications,  or  a  request  for expressions of interest as it deems
     3  appropriate; and it shall accept applications  in  response  for  desig-
     4  nation  as  a NYCARD facility from not-for-profit, academic and research
     5  entities  in  the state. Within eighteen months after the effective date
     6  of this article the council shall:
     7    (1) designate as NYCARD facilities: federal Studies to Advance  Autism
     8  Research  and  Treatment  (STAART)  Network  programs located within the
     9  state, the Cody Center for  Autism  and  Developmental  Disabilities  at
    10  Stony  Brook University, and the Center for Autism and Related Disabili-
    11  ties at the University at Albany;
    12    (2) expand current NYCARD facilities  located  in  or  around  Albany,
    13  Buffalo,  New  York  City, Northern Metropolitan New York and Rochester;
    14  and
    15    (3) create one or more NYCARD  facilities  in  or  around  Binghamton,
    16  Plattsburgh, Potsdam, Poughkeepsie, Syracuse and such other areas as the
    17  council shall determine.
    18    (c) NYCARD facilities shall provide training, referral and information
    19  for  parents, educators, medical professionals and other service provid-
    20  ers, including:
    21    (1) information and referral;
    22    (2) education and training;
    23    (3) technical assistance and consultation;
    24    (4) provision of, or referral to, family support groups;
    25    (5) dissemination of evidence-based models of practice  for  effective
    26  service delivery; and
    27    (6) such other services as the council shall require.
    28    (d)  Where  feasible,  NYCARD facilities shall also provide treatment-
    29  based services including, but not  limited  to,  case  consultation  and
    30  clinical services.
    31    (e)  The  council  is  hereby authorized to contract for services with
    32  designated NYCARD facilities pursuant to this subdivision and to provide
    33  grants pursuant to such contracts within amounts designated specifically
    34  therefore. The council may act through one or more  member  state  agen-
    35  cies,  which  it shall designate by majority vote, for administration of
    36  such contracts and grants. Insofar as possible, where provision of  such
    37  services  is  paid  for,  in whole or in part, through a contract with a
    38  state agency, the cost charged to recipients shall be reduced pro  rata.
    39  Contracts with NYCARD facilities shall vary depending on the services to
    40  be  provided,  and any such contract shall require that funding provided
    41  by, through or pursuant to this  subdivision,  not  be  used  to  offset
    42  existing expenditures for the same or similar programs.
    43    5.  NYCARD  facilities,  as well as organizations receiving federal or
    44  non-state grant funds for research, may receive grants pursuant to  this
    45  subdivision  for  research within amounts designated specifically there-
    46  fore.  The council is hereby authorized to administer  such  grants  and
    47  may  act through one or more member state agencies which it shall desig-
    48  nate by majority vote.  Such grants may allow  for  the  enhancement  of
    49  activities  funded  from  such  non-state sources that are already being
    50  undertaken by such organizations, including: the continuation of ongoing
    51  research; the provision of technical information; guidance  for  practi-
    52  tioners  on    ASD  care  strategies,  therapies,  medications and other
    53  related  matters;  collaborations    with  practitioners,  schools   and
    54  networks;  and  other  activities  the  council  deems appropriate. Such
    55  grants may be used for any purpose in  furtherance  of  such  activities
    56  including,  without  limitation, the purchase of equipment and supplies,

        S. 5077                             6

     1  payment of salaries, or other activities and purposes as approved by the
     2  council.
     3    § 4. This act shall take effect immediately.
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