Creates the New York autism spectrum disorders treatment, training and research council and provides for the powers and duties of the council

Summary of provisions

Section 1. Intent. Section 2. Enacting Clause.

Section 3. Amends the Executive Law by adding Article 41-A as follows:

*Section 908. Definitions.

*Section 908-a. Creates the dew York Autism and Autism Spectrum Disor- ders Treatment, Training and Research Council.

Purposes

To develop a coordinated New York State Policy and Plan with respect to treatment, training and research;

(b) To review State agency initiatives for consistency with the State Policy and Plan;

(c) To provide a continuing forum for discussion related to the develop- ment and implementation of the State Policy and Plan; and

(d) To take enumerated steps to expand and coordinate treatment, train- ing and research.

Organization

28 members (a) 13 Ex Officio:

*Commissioner of the Department of Health (co-chair)

*Commissioner of the Office of Mental Retardation and Developmental Disabilities (co-chair)

*Commissioner of the Department of Labor

*Commissioner of the Department of Education

*Commissioner of the Office of Children and Family Services

*Commissioner of the Office of Mental Health

*Commissioner of the Office of Temporary and Disability Assistance

*Superintendent of the Insurance Department

*Chancellor of the State University of New York

*Chancellor of the City University of New York

*Chair of the Council on Children and Families

*Chair of the Commission on Quality of Care and Advocacy for Persons with Disabilities

*Executive Director of the Disabilities Planning Council

(b) Seven Appointments by the Governor: Two members must represent not- for-profits.

(c) Six Recommendations by the Majority: The President Pro Temp and the Speaker would each recommend three members which must include:

*At least one expert

*At least one family member

(d) Two Recommendations by the Minority leaders of the Senate and Assem- bly: - Leaders would each recommend one member

*Section 908-b. Enumerates the functions, powers and duties of the Coun- cil. 1. COMMUNITY FORUMS: Community forums must be held every five years-in various locations throughout the State-to allow patients, fami- ly members, service providers, and expert researchers to contribute to the State Policy and Plan.

2. STATE POLICY AND PLAN: The Council must submit an annual report to the Governor and Legislature that includes information, findings and recommendations regarding:

(a) Coordination of services (b) Early identification and intervention (c) Lifelong service delivery (d) Family support (e) Increased dissemination of information (f) Coordination of research (g) Financing training, treatment and research in the State (h) Statistical analyses

3. IMPLEMENTATION OF THE STATE POLICY AND PLAN: Except where prohibited by law, rule or requirement, the State Policy and Plan is binding upon member state agencies. State agencies must promulgate regulations and otherwise act to give effect to the State Policy and Plan.

4. NYCARD FACILITIES: The Council shall select and designate regional New York Centers on Autism and Related Disabilities

(a) The Council must establish criteria for selection and designation

(b) The Council must accept applications from not-for-profit, academic and research agencies; and within 18 months:

*Designate as NYCARD Facilities: *Federal Studies to Advance Autism Research and Treatment (STAART) *Network programs located within the State *Cody Center for Autism and Developmental Disabilities at Stony Brook University *Center for Autism and Related Disabilities at the University at Albany

*Expand current NYCARD Facilities located in or around:

*Albany *Buffalo *New York City *Northern Metropolitan New York *Rochester

*Create one or more NYCARD Facilities in or around:

*Binghamton *Plattsburgh *Potsdam *Poughkeepsie *Syracuse

(c) NYCARD Facilities must provide training, referrals and information for parents, educators, medical professionals and other service provid- ers. Where feasible, NYCARD facilities must also provide treatment-based services, including case consultation and clinical services.

5. RESEARCH: NYCARD Facilities, as well as organizations receiving Federal or non-state grant funds for research, may receive grants for the Enhancement of activities already being undertaken by such organiza- tions.

Justification

As noted in Section 1 of this bill, Autism and Autism Spectrum Disorders (ASDs) affect approximately one in every 110 chil- dren. Given the high rate of incidence, which has increased dramatically in recent years, the Centers for Disease Control and Prevention now considers ASDs an "urgent public health concern."

In its 2010 report, the New York State Interagency Task Force on Autism (Task Force), identified "five pressing needs" of the growing population of New Yorkers diagnosed with ASDs: coordination of state services, early identification, lifelong service delivery, increased dissemination of information, and coordination of research efforts.

This bill creates a centralized State entity to address the current and future needs of individuals and families affected by ASDs. Further, it integrates many of the Task Force's proposals. Finally, this bill not only provides for more efficient and effective research, but also allows

the Council flexibility to react and adapt to any information yielded as a result.

Legislative history

New bill.

FISCAL IMPLICATIONS:None, with the exception of any appropriations made in support of this measure.

Effective date

This act shall take effect immediately.