Defines a bill of rights for persons with autism or autism spectrum disorders.
TITLE OF BILL: An act to amend the mental hygiene law, in relation to defining a bill of rights for persons with autism or autism spectrum disorders
PURPOSE: This bill would provide persons diagnosed with autism and autism spectrum disorders (ASDs) certain rights with respect to the funding of research and provision of treatment.
SUMMARY OF PROVISIONS: Section 1 amends Mental Hygiene Law by adding section 16.39, which establishes a bill of rights for persons diagnosed with autism or ASDs.
Subsection (a) guarantees equitable insurance coverage for individuals diagnosed with autism or ASDs.
Subsection (b) accords such persons rights including: increased funding of autism and ASDs research; access to a comprehensive continuum of care; treatment within a coordinated system of agencies; receipt of care in-home, as well as at treatment centers proximately located to the patient's residence; family-driven and patient-focused treatment by highly qualified professionals; and access to all information necessary facilitate informed consent.
JUSTIFICATION: Although estimates vary, Autism and Autism Spectrum Disorders (ASDs) presently affect one in every 91 to 150 children. Given the high rate of incidence, which has increased dramatically in recent years, New York State must address the basic needs of its growing population of citizens impacted by Autism and ASDs.
In its 2010 report, the New York State Interagency Task Force on Autism, identified "five pressing needs" of those affected by Autism and ASDs: early identification, coordination of State services, lifelong service delivery, increased dissemination of information, and coordination of research efforts.
This bill will address these needs by securing fundamental rights to research, treatment, information and insurance coverage for individuals and their families.
LEGISLATIVE HISTORY: 2011-12: S.2148/A.1708 Referred to Mental Health
FISCAL IMPLICATIONS: None.
LOCAL FISCAL IMPLICATIONS: None.
EFFECTIVE DATE: This act shall take effect immediately.
STATE OF NEW YORK ________________________________________________________________________ 481 2013-2014 Regular Sessions IN SENATE (PREFILED) January 9, 2013 ___________Introduced by Sen. KENNEDY -- read twice and ordered printed, and when printed to be committed to the Committee on Mental Health and Develop- mental Disabilities AN ACT to amend the mental hygiene law, in relation to defining a bill of rights for persons with autism or autism spectrum disorders THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM- BLY, DO ENACT AS FOLLOWS: Section 1. The mental hygiene law is amended by adding a new section 16.39 to read as follows: S 16.39 BILL OF RIGHTS FOR PERSONS WITH AUTISM OR AUTISM SPECTRUM DISOR- DERS. (A) BOTH EARLY INTERVENTION AND CONTINUING TREATMENT ARE INTEGRAL TO THE HEALTHCARE OF THOSE DIAGNOSED WITH AUTISM OR AUTISM SPECTRUM DISOR- DERS. INSURANCE COMPANIES SHALL NOT DISCRIMINATE AGAINST INDIVIDUALS WITH SUCH DIAGNOSES BY IMPOSING FINANCIAL BURDENS AND BARRIERS TO TREAT- MENT SUCH AS DIFFERENTIAL DEDUCTIBLES, DISPARATE CO-PAYS, SPENDING CAPS, AND ARBITRARY LIMITS ON ACCESS TO MEDICALLY NECESSARY INPATIENT AND/OR OUTPATIENT SERVICES. (B) ALL PERSONS WITH AUTISM OR AUTISM SPECTRUM DISORDERS SHALL HAVE THE FOLLOWING RIGHTS: (1) THE RIGHT TO AN INCREASED INVESTMENT IN HIGH-QUALITY RESEARCH ON THE ORIGIN, DIAGNOSIS AND TREATMENT OF AUTISM AND AUTISM SPECTRUM DISOR- DERS; (2) THE RIGHT TO ACCESS, AND HAVE THEIR PARENTS AND/OR GUARDIANS ACCESS, A COMPREHENSIVE CONTINUUM OF CARE BASED ON THE PATIENT'S NEEDS- -INCLUDING A FULL RANGE OF PSYCHOSOCIAL, BEHAVIORAL, PHARMACOLOGICAL AND EDUCATIONAL SERVICES--REGARDLESS OF THE COST; (3) THE RIGHT TO RECEIVE TREATMENT WITHIN A COORDINATED SYSTEM OF CARE WHERE ALL AGENCIES DELIVERING SERVICES (INCLUDING BUT NOT LIMITED TOEXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD02059-01-3 S. 481 2
HEALTH, MENTAL HEALTH, CHILD WELFARE, JUVENILE JUSTICE AND EDUCATION) WORK TOGETHER TO OPTIMIZE TREATMENT OUTCOME; (4) THE RIGHT TO RECEIVE IN-HOME CARE, AS WELL AS TREATMENT IN COMMU- NITY-BASED SETTINGS AS CLOSE TO HOME AS POSSIBLE; (5) THE RIGHT TO RECEIVE CARE FROM HIGHLY QUALIFIED PROFESSIONALS WHO ACT IN THE BEST INTERESTS OF THE PATIENT AND FAMILY; (6) THE RIGHT TO TREATMENT THAT IS FAMILY-DRIVEN AND PATIENT-FOCUSED. PARENTS AND/OR GUARDIANS (AND PATIENTS WHEN APPROPRIATE) MUST HAVE THE PRIMARY DECISION-MAKING ROLE WITH REGARD TO TREATMENT; (7) THE RIGHT TO RECEIVE, AND HAVE THEIR PARENTS AND/OR GUARDIANS RECEIVE, ALL INFORMATION REGARDING THE RISKS, BENEFITS AND ANTICIPATED OUTCOMES OF ALL AVAILABLE TREATMENT OPTIONS THAT IS NECESSARY TO FACILI- TATE EDUCATED DECISIONS AND INFORMED CONSENT; (8) THE RIGHT TO ACCESS, AND HAVE THEIR PARENTS AND/OR GUARDIANS ACCESS, MENTAL HEALTH PROFESSIONALS WITH APPROPRIATE TRAINING AND EXPE- RIENCE. PRIMARY CARE PROFESSIONALS PROVIDING MENTAL HEALTH SERVICES MUST HAVE ACCESS TO CONSULTATION AND REFERRAL RESOURCES FROM QUALIFIED MENTAL HEALTH PROFESSIONALS; AND (9) THE RIGHT TO APPROPRIATE MONITORING OF PHARMACEUTICAL TREATMENT FOR MENTAL DISORDERS, BOTH TO OPTIMIZE THE BENEFITS AND TO MINIMIZE ANY RISKS OR POTENTIAL SIDE-EFFECTS ASSOCIATED WITH SUCH TREATMENTS. S 2. This act shall take effect immediately.