S T A T E O F N E W Y O R K
________________________________________________________________________
5077
2021-2022 Regular Sessions
I N S E N A T E
February 23, 2021
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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:
Section 1. Intent. The legislature hereby finds and declares that
autism spectrum disorders, hereinafter ASDs, currently affect approxi-
mately one in 110 children and are considered to be an "urgent public
health concern" by the Centers for Disease Control and Prevention.
The legislature further finds that New York state has not responded
sufficiently to this crisis. In its 2010 report, the New York state
Interagency Task Force on Autism, hereinafter Task Force, identified
five primary needs of the growing population of New York citizens
affected by ASDs: coordination of state services, early identification,
lifelong service delivery, increased dissemination of information, and
coordination of research efforts. First, as a collaborative effort of 11
independent state agencies that each serve individuals impacted by ASDs,
the Task Force itself exemplifies the need for coordination of research,
treatment and training responsibilities. Second, while the Task Force
determined that early identification and intervention were crucial to
minimizing the symptoms and impact of ASDs, it reported that only eight
percent of pediatricians routinely screen for ASDs and approximately 30
percent of children with ASDs do not receive the early intervention
services provided by the New York State Department of Health. Third,
recognizing that the thousands of children diagnosed with ASDs will soon
age out of the state's educational system, the Task Force noted a dearth
of post-secondary training and transitional services. Fourth, the Task
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
benefit from a centralized clearinghouse of relevant information, and
called for the provision of user-friendly access to such information.
Finally, the Task Force reported that collaboratively determining the
direction of future ASD research would best utilize available public and
private funding.
The legislature therefore declares that there is a need to expand
treatment, training and research with regard to ASDs -- including the
enhancement of efforts to improve access to, and the efficacy of, needed
services, support and treatment.
§ 2. This act shall be known, and may be cited, as the "New York
autism spectrum disorders treatment, training and research act".
§ 3. The executive law is amended by adding a new article 41-A to read
as follows:
ARTICLE 41-A
NEW YORK AUTISM SPECTRUM DISORDERS
TREATMENT, TRAINING AND RESEARCH COUNCIL
SECTION 908. DEFINITIONS.
908-A. NEW YORK AUTISM SPECTRUM DISORDERS TREATMENT, TRAINING
AND RESEARCH COUNCIL; PURPOSE AND ORGANIZATION.
908-B. FUNCTIONS, POWERS AND DUTIES OF THE COUNCIL.
§ 908. DEFINITIONS. WHEN USED IN THIS ARTICLE:
1. "AUTISM SPECTRUM DISORDER" OR "ASD" MEANS A NEUROBIOLOGICAL CONDI-
TION THAT INCLUDES AUTISM, ASPERGER SYNDROME, RETT'S SYNDROME, OR PERVA-
SIVE DEVELOPMENTAL DISORDER;
2. "FAMILY" MEANS THE PARENT OR LEGAL GUARDIAN OF AN INDIVIDUAL DIAG-
NOSED WITH AN AUTISM SPECTRUM DISORDER; AND
3. "PATIENT" MEANS AN INDIVIDUAL DIAGNOSED WITH AN AUTISM SPECTRUM
DISORDER.
§ 908-A. NEW YORK AUTISM SPECTRUM DISORDERS TREATMENT, TRAINING AND
RESEARCH COUNCIL; PURPOSE AND ORGANIZATION. 1. THERE SHALL BE WITHIN THE
EXECUTIVE DEPARTMENT THE NEW YORK AUTISM SPECTRUM DISORDERS TREATMENT,
TRAINING AND RESEARCH COUNCIL, HEREINAFTER COUNCIL, WHOSE PURPOSES SHALL
BE TO:
(A) DEVELOP A COORDINATED NEW YORK STATE AUTISM SPECTRUM DISORDERS
TREATMENT, TRAINING AND RESEARCH POLICY AND PLAN, HEREINAFTER STATE
POLICY AND PLAN, WITH RESPECT TO THE PROVISION OF SERVICES TO PATIENTS
AND THEIR FAMILIES;
(B) REVIEW STATE AGENCY INITIATIVES FOR THEIR CONSISTENCY WITH THE
STATE POLICY AND PLAN;
(C) PROVIDE A CONTINUING FORUM FOR DISCUSSION RELATED TO THE DEVELOP-
MENT AND IMPLEMENTATION OF THE STATE POLICY AND PLAN; AND
(D) TAKE THE STEPS ENUMERATED HEREIN TO EXPAND AND COORDINATE TREAT-
MENT, TRAINING AND RESEARCH.
2. THE COUNCIL SHALL BE COMPRISED OF TWENTY-EIGHT MEMBERS AS FOLLOWS:
(A) THE COMMISSIONER OF THE DEPARTMENT OF HEALTH, THE COMMISSIONER OF
THE DEPARTMENT OF LABOR, THE COMMISSIONER OF THE OFFICE OF CHILDREN AND
FAMILY SERVICES, THE COMMISSIONER OF EDUCATION, THE COMMISSIONER OF THE
OFFICE OF MENTAL HEALTH, THE COMMISSIONER OF THE OFFICE FOR PEOPLE WITH
DEVELOPMENTAL DISABILITIES, THE COMMISSIONER OF THE OFFICE OF TEMPORARY
AND DISABILITY ASSISTANCE, THE SUPERINTENDENT OF FINANCIAL SERVICES, THE
CHANCELLOR OF THE STATE UNIVERSITY OF NEW YORK, THE CHANCELLOR OF THE
CITY UNIVERSITY OF NEW YORK, THE CHAIR OF THE COUNCIL ON CHILDREN AND
FAMILIES, THE CHAIR OF THE COMMISSION ON QUALITY OF CARE AND ADVOCACY
FOR PERSONS WITH DISABILITIES, AND THE EXECUTIVE DIRECTOR OF THE DISA-
BILITIES PLANNING COUNCIL, ALL OF WHOM SHALL SERVE EX OFFICIO AND WHO
MAY DESIGNATE REPRESENTATIVES TO ACT ON THEIR BEHALF;
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(B) SEVEN MEMBERS APPOINTED BY THE GOVERNOR, WHO SHALL POSSESS EXPER-
TISE IN ASDS. AT LEAST TWO APPOINTEES SHALL REPRESENT NOT-FOR-PROFIT
ENTITIES WITH THE PRIMARY PURPOSE OF PROVIDING ACCESS TO EDUCATION,
INFORMATION AND/OR SERVICES RELATED TO THE CARE OF PATIENTS; AND
(C) EIGHT MEMBERS APPOINTED BY THE GOVERNOR ON THE RECOMMENDATION OF
THE LEGISLATIVE LEADERS AS FOLLOWS:
(1) THE TEMPORARY PRESIDENT OF THE SENATE AND THE SPEAKER OF THE
ASSEMBLY SHALL EACH RECOMMEND THREE MEMBERS TO THE COUNCIL. THE TEMPO-
RARY PRESIDENT OF THE SENATE AND THE SPEAKER OF THE ASSEMBLY SHALL EACH
RECOMMEND AT LEAST ONE CLINICAL OR RESEARCH EXPERT IN THE FIELD OF ASDS
AND AT LEAST ONE FAMILY MEMBER OF A PATIENT; AND
(2) THE MINORITY LEADER OF THE SENATE AND THE MINORITY LEADER OF THE
ASSEMBLY SHALL EACH RECOMMEND ONE MEMBER TO THE COUNCIL.
3. VACANCIES IN THE MEMBERSHIP OF THE COUNCIL SHALL BE FILLED IN THE
MANNER PROVIDED FOR ORIGINAL APPOINTMENTS.
4. THE COMMISSIONER OF THE DEPARTMENT OF HEALTH AND THE COMMISSIONER
OF THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES SHALL SERVE, EX
OFFICIO, AS CO-CHAIRS OF THE COUNCIL. ADMINISTRATIVE DUTIES OF THE COUN-
CIL SHALL BE THE RESPONSIBILITY OF, AND EXECUTED BY, THE DEPARTMENT OF
HEALTH AND THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES PURSU-
ANT TO AN AGREEMENT EFFECTED BY THE CO-CHAIRS.
5. MEMBERS OF THE COUNCIL SHALL RECEIVE NO COMPENSATION FOR THEIR
SERVICES BUT SHALL BE REIMBURSED FOR NECESSARY EXPENSES.
6. THE COUNCIL SHALL MEET QUARTERLY, OR MORE FREQUENTLY IF ITS BUSI-
NESS SHALL REQUIRE, PROVIDED THAT THE COMMUNITY FORUMS REQUIRED PURSUANT
TO SECTION NINE HUNDRED EIGHT-B OF THIS ARTICLE SHALL CONSTITUTE A
FORMAL MEETING OF THE COUNCIL.
§ 908-B. FUNCTIONS, POWERS AND DUTIES OF THE COUNCIL. 1. NOT LATER
THAN ONE YEAR AFTER THE EFFECTIVE DATE OF THIS ARTICLE, THE COUNCIL
SHALL CONDUCT COMMUNITY FORUMS TO GAIN INPUT FROM PATIENTS, FAMILY
MEMBERS, SERVICE PROVIDERS, EXPERT RESEARCHERS AND OTHER INTERESTED
PARTIES CONCERNING THE DEVELOPMENT OF THE STATE POLICY AND PLAN REQUIRED
BY THIS SECTION. THE COUNCIL SHALL THEN CONDUCT COMMUNITY FORUMS EVERY
FIVE YEARS, OR MORE FREQUENTLY AS THE COUNCIL SHALL DETERMINE. COMMUNITY
FORUMS SHALL BE CONDUCTED IN OR AROUND ALBANY, BINGHAMTON, BUFFALO, LONG
ISLAND, NEW YORK CITY, NORTHERN METROPOLITAN NEW YORK, PLATTSBURGH,
POTSDAM, POUGHKEEPSIE, ROCHESTER, SYRACUSE, AND OTHER AREAS AS THE COUN-
CIL SHALL DETERMINE.
2. THE COUNCIL SHALL PROVIDE THE INITIAL REPORT OF THE STATE POLICY
AND PLAN REQUIRED BY THIS SECTION TO THE GOVERNOR AND THE LEGISLATURE ON
OR BEFORE FEBRUARY FIRST, TWO THOUSAND TWENTY-THREE, AND SHALL PROVIDE
AN UPDATE OF SUCH POLICY AND PLAN BY FEBRUARY FIRST OF EVERY YEAR THERE-
AFTER. THE STATE POLICY AND PLAN SHALL INCLUDE COMPREHENSIVE INFORMA-
TION, FINDINGS AND RECOMMENDATIONS CONCERNING, BUT NOT LIMITED TO, THE
FOLLOWING:
(A) COORDINATION OF SERVICES, INCLUDING: COORDINATING STATE SERVICES
AND PROVIDING CASE MANAGEMENT; CLARIFYING AND STREAMLINING ELIGIBILITY
AND INTAKE PROCESSES FOR STATE SERVICE SYSTEMS; ADDRESSING THE NEEDS OF
PATIENTS WHO FAIL TO MEET ELIGIBILITY CRITERIA OF STATE AGENCIES; AND
UNITING PUBLIC AND PRIVATE AGENCIES IN A MANNER THAT WILL BEST SERVE
PATIENTS AND THEIR FAMILIES. IN ASSESSING THE STRENGTHS AND GAPS IN
SERVICES FOR PATIENTS AND THEIR FAMILIES, THE STATE POLICY AND PLAN
SHALL INCLUDE EVALUATIONS AND RECOMMENDATIONS BY REGION;
(B) EARLY IDENTIFICATION AND INTERVENTION, INCLUDING: STANDARDIZING
ASD SCREENING PRACTICES; TRAINING EDUCATORS, MEDICAL PROFESSIONALS AND
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OTHER SERVICE PROVIDERS TO RECOGNIZE AND TREAT ASDS; AND PROMOTING EARLY
CHILDHOOD SCREENING BY PRIMARY CARE PHYSICIANS;
(C) LIFELONG SERVICE DELIVERY, INCLUDING: PROMOTING ACCESS TO
EVIDENCE-BASED SERVICES FOR PATIENTS OF ALL AGES; ESTABLISHING TREATMENT
GUIDELINES AND TRAINING PROGRAMS FOR CAREGIVERS; PROVIDING RESIDENTIAL
SUPPORTS TO ADULT PATIENTS; AND IMPLEMENTING EMPLOYMENT TRAINING AND
POST-SCHOOL TRANSITIONAL SERVICES;
(D) FAMILY SUPPORT, INCLUDING: EXPANDING RESPITE CARE OPTIONS AND
IMPLEMENTING OTHER MEANS TO REDUCE STRAIN ON FAMILIES;
(E) INCREASED DISSEMINATION OF INFORMATION, INCLUDING: INCREASING ASD
AWARENESS PROGRAMS; DISTRIBUTING BEST PRACTICES TO EDUCATORS, MEDICAL
PROFESSIONALS AND OTHER SERVICE PROVIDERS; CONTINUING THE TASK FORCE'S
EFFORTS TO CREATE A CENTRALIZED HUB OF INFORMATION ON ASDS THROUGH THE
LAUNCH OF AN ONLINE INITIATIVE FOR ADULTS AND CHILDREN ON THE SPECTRUM
(NEW YORK ACTS); AND ENHANCING SUPPORT FOR PATIENTS AND FAMILIES IN
NON-ENGLISH SPEAKING COMMUNITIES;
(F) COORDINATED RESEARCH, INCLUDING: UTILIZING AVAILABLE RESEARCH
FUNDS IN THE MOST EFFECTIVE AND EFFICIENT MANNER; TRANSLATING RESULTS
INTO IMPROVED TREATMENT PRACTICES; DISTRIBUTING RESULTS TO EDUCATORS,
MEDICAL PROFESSIONALS AND OTHER SERVICE PROVIDERS; AND UNITING ASD
RESEARCHERS IN SEEKING TO ACHIEVE A BETTER UNDERSTANDING OF ASDS;
(G) FINANCING TRAINING, TREATMENT AND RESEARCH IN THE STATE, INCLUD-
ING: MAKING FINANCING MORE EFFICIENT AND EFFECTIVE; STRENGTHENING FAMILY
SERVICES AND SUPPORTS; PROVIDING A SEAMLESS SPECTRUM OF SERVICES IRRE-
SPECTIVE OF AGENCY JURISDICTION; IDENTIFYING EXISTING AND POTENTIAL
SOURCES OF FUNDING; AND PARTNERING WITH PRIVATE INDIVIDUALS, FOUNDATIONS
AND OTHER ENTITIES; AND
(H) A STATISTICAL ANALYSIS OF DATA CONCERNING THE PREVALENCE OF AUTISM
IN NEW YORK STATE, BOTH STATEWIDE AND BY REGION; A LISTING OF AVAILABLE
AND PROPOSED PROGRAMS, AND THEIR AVAILABILITY BY REGION; A LISTING OF
AVAILABLE AND PROPOSED EXPENDITURES, AND THEIR AVAILABILITY BY REGION; A
LISTING OF FINANCIAL RESOURCES AVAILABLE FOR THE PROVISION OF SERVICES
TO PATIENTS AND THEIR FAMILIES; AND SUCH OTHER INFORMATION AS THE COUN-
CIL SHALL DEEM RELEVANT.
3. EXCEPT WHERE OTHERWISE PROHIBITED BY STATE STATUTE OR BY FEDERAL
LAW, RULE OR REQUIREMENT, THE PLAN SHALL BE BINDING UPON MEMBER STATE
AGENCIES, WHICH SHALL PROMULGATE REGULATIONS AND TAKE SUCH OTHER ACTIONS
REQUIRED TO EFFECTUATE THE STATE POLICY AND PLAN.
4. THE COUNCIL SHALL SELECT AND DESIGNATE REGIONAL NEW YORK CENTERS ON
AUTISM AND RELATED DISABILITIES, HEREINAFTER NYCARD FACILITIES, FOR THE
PURPOSE OF IDENTIFYING, DISSEMINATING, AND ASSISTING IN THE IMPLEMENTA-
TION OF EVIDENCE-BASED PRACTICES TO SERVE PATIENTS AND THEIR FAMILIES.
(A) THE COUNCIL SHALL ESTABLISH CRITERIA FOR THE SELECTION AND DESIG-
NATION OF NYCARD FACILITIES, WHICH SHALL INCLUDE AN ASSESSMENT OF APPLI-
CANT FACILITIES:
(1) PARTICIPATION IN TRAINING TEACHERS, PARENTS AND PROFESSIONALS;
(2) LEVEL OF NON-STATE FINANCIAL ASSISTANCE AVAILABLE TO SUPPORT OPER-
ATIONS;
(3) UNDERSTANDING OF PROGRAM GOALS AND OBJECTIVES ARTICULATED BY THE
COUNCIL;
(4) PROPOSED GEOGRAPHICAL AREA TO BE SERVED;
(5) PROPOSED WORK PLAN AND STAFF EXPERTISE;
(6) RELATIONSHIP WITH ENTITIES OR COMMUNITIES TO BE SERVED, EVIDENCED
BY SUCH FACTORS AS REPRESENTATION ON BOARDS OF DIRECTORS OR ADVISORY
COMMITTEES; AND
(7) SUCH OTHER FACTORS AS THE COUNCIL SHALL DETERMINE.
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(B) THE COUNCIL SHALL DEVELOP A REQUEST FOR PROPOSALS, A REQUEST FOR
QUALIFICATIONS, OR A REQUEST FOR EXPRESSIONS OF INTEREST AS IT DEEMS
APPROPRIATE; AND IT SHALL ACCEPT APPLICATIONS IN RESPONSE FOR DESIG-
NATION AS A NYCARD FACILITY FROM NOT-FOR-PROFIT, ACADEMIC AND RESEARCH
ENTITIES IN THE STATE. WITHIN EIGHTEEN MONTHS AFTER THE EFFECTIVE DATE
OF THIS ARTICLE THE COUNCIL SHALL:
(1) DESIGNATE AS NYCARD FACILITIES: FEDERAL STUDIES TO ADVANCE AUTISM
RESEARCH AND TREATMENT (STAART) NETWORK PROGRAMS LOCATED WITHIN THE
STATE, THE CODY CENTER FOR AUTISM AND DEVELOPMENTAL DISABILITIES AT
STONY BROOK UNIVERSITY, AND THE CENTER FOR AUTISM AND RELATED DISABILI-
TIES AT THE UNIVERSITY AT ALBANY;
(2) EXPAND CURRENT NYCARD FACILITIES LOCATED IN OR AROUND ALBANY,
BUFFALO, NEW YORK CITY, NORTHERN METROPOLITAN NEW YORK AND ROCHESTER;
AND
(3) CREATE ONE OR MORE NYCARD FACILITIES IN OR AROUND BINGHAMTON,
PLATTSBURGH, POTSDAM, POUGHKEEPSIE, SYRACUSE AND SUCH OTHER AREAS AS THE
COUNCIL SHALL DETERMINE.
(C) NYCARD FACILITIES SHALL PROVIDE TRAINING, REFERRAL AND INFORMATION
FOR PARENTS, EDUCATORS, MEDICAL PROFESSIONALS AND OTHER SERVICE PROVID-
ERS, INCLUDING:
(1) INFORMATION AND REFERRAL;
(2) EDUCATION AND TRAINING;
(3) TECHNICAL ASSISTANCE AND CONSULTATION;
(4) PROVISION OF, OR REFERRAL TO, FAMILY SUPPORT GROUPS;
(5) DISSEMINATION OF EVIDENCE-BASED MODELS OF PRACTICE FOR EFFECTIVE
SERVICE DELIVERY; AND
(6) SUCH OTHER SERVICES AS THE COUNCIL SHALL REQUIRE.
(D) WHERE FEASIBLE, NYCARD FACILITIES SHALL ALSO PROVIDE TREATMENT-
BASED SERVICES INCLUDING, BUT NOT LIMITED TO, CASE CONSULTATION AND
CLINICAL SERVICES.
(E) THE COUNCIL IS HEREBY AUTHORIZED TO CONTRACT FOR SERVICES WITH
DESIGNATED NYCARD FACILITIES PURSUANT TO THIS SUBDIVISION AND TO PROVIDE
GRANTS PURSUANT TO SUCH CONTRACTS WITHIN AMOUNTS DESIGNATED SPECIFICALLY
THEREFORE. THE COUNCIL MAY ACT THROUGH ONE OR MORE MEMBER STATE AGEN-
CIES, WHICH IT SHALL DESIGNATE BY MAJORITY VOTE, FOR ADMINISTRATION OF
SUCH CONTRACTS AND GRANTS. INSOFAR AS POSSIBLE, WHERE PROVISION OF SUCH
SERVICES IS PAID FOR, IN WHOLE OR IN PART, THROUGH A CONTRACT WITH A
STATE AGENCY, THE COST CHARGED TO RECIPIENTS SHALL BE REDUCED PRO RATA.
CONTRACTS WITH NYCARD FACILITIES SHALL VARY DEPENDING ON THE SERVICES TO
BE PROVIDED, AND ANY SUCH CONTRACT SHALL REQUIRE THAT FUNDING PROVIDED
BY, THROUGH OR PURSUANT TO THIS SUBDIVISION, NOT BE USED TO OFFSET
EXISTING EXPENDITURES FOR THE SAME OR SIMILAR PROGRAMS.
5. NYCARD FACILITIES, AS WELL AS ORGANIZATIONS RECEIVING FEDERAL OR
NON-STATE GRANT FUNDS FOR RESEARCH, MAY RECEIVE GRANTS PURSUANT TO THIS
SUBDIVISION FOR RESEARCH WITHIN AMOUNTS DESIGNATED SPECIFICALLY THERE-
FORE. THE COUNCIL IS HEREBY AUTHORIZED TO ADMINISTER SUCH GRANTS AND
MAY ACT THROUGH ONE OR MORE MEMBER STATE AGENCIES WHICH IT SHALL DESIG-
NATE BY MAJORITY VOTE. SUCH GRANTS MAY ALLOW FOR THE ENHANCEMENT OF
ACTIVITIES FUNDED FROM SUCH NON-STATE SOURCES THAT ARE ALREADY BEING
UNDERTAKEN BY SUCH ORGANIZATIONS, INCLUDING: THE CONTINUATION OF ONGOING
RESEARCH; THE PROVISION OF TECHNICAL INFORMATION; GUIDANCE FOR PRACTI-
TIONERS ON ASD CARE STRATEGIES, THERAPIES, MEDICATIONS AND OTHER
RELATED MATTERS; COLLABORATIONS WITH PRACTITIONERS, SCHOOLS AND
NETWORKS; AND OTHER ACTIVITIES THE COUNCIL DEEMS APPROPRIATE. SUCH
GRANTS MAY BE USED FOR ANY PURPOSE IN FURTHERANCE OF SUCH ACTIVITIES
INCLUDING, WITHOUT LIMITATION, THE PURCHASE OF EQUIPMENT AND SUPPLIES,
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PAYMENT OF SALARIES, OR OTHER ACTIVITIES AND PURPOSES AS APPROVED BY THE
COUNCIL.
§ 4. This act shall take effect immediately.
