Prader-Willi Syndrome is now recognized in NYS law!!!
Senate Bill S1219 & ASSEMBLY BILL AB 5974 was signed by Governor Cuomo on July 25th!
Approved and effective July 25, 2017
An Act to Ammend the Mental Hygiene Law, in relation to adding Prader-Willi Syndrome to the definition of developmental disability.
THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEMBLY, DO ENACT AS FOLLOWS:
Section 1. Subparagraph 1 of paragraph (a) of subdivision 22 of section 1.03 of the mental hygiene law, as amended by section 4 of part MM of chapter 58 of the laws of 2015, is amended to read as follows:
(1) is attributable to intellectual disability, cerebral palsy, epilepsy, neurological impairment, familial dysautonomia, PRADER-WILLI SYNDROME or autism;
S 2. This act shall take effect immediately.
This bill will ease access to needed supports for those with Prader-Willi syndrome. Previously, eligibility for supports through the Office of Persons with Developmental Disabilities (OPWDD) was based on several criteria, with an IQ in the range previously termed "mentally retarded" and limited adaptive (self-help, community living, communication) skills being the foremost considerations. While it certainly makes sense that these individuals with significantly impaired functioning will need life-long access to respite, medical, employment and housing options, families with Prader-Willi found themselves in an incredibly tenuous situation.
This bill acknowledges the reality of Prader-Willi: that there will be severely impaired functioning regardless of an achieved score on an IQ test. The new legislation makes the diagnosis of PWS the primary consideration in determining eligibility, rather than a test score.
The Prader-Willi Alliance of New York is proud of what we have accomplished to ensure that future generations will have access to needed supports and services!
Senate Bill S1219 Sponsored by Senator Ortt Assembly Bill AB 5974 Sponsored by Assemblywoman Gunther