Home > Uncategorized > Autism definition and commission bill raises some concerns

Autism definition and commission bill raises some concerns

Process does matter, and we have a number of concerns about what happened to the process in the surprise adoption by the state House of Representatives last week of a major piece of legislation affecting people with autism in Massachusetts.

The bill (H. 4047), which was passed by the House on April 16, ties together a number of separate pieces of legislation, including a  bill that would expand eligibility for state services both to persons with autism and a condition called Prader-Willi Syndrome.  The combined bill also includes language from a separate bill that would establish a permanent state autism commission in Massachusetts (H. 3777).

We acknowledge the good intentions of the leadership in the House in trying to extend state services potentially to thousands of people with autism who currently do not qualify for care from the Department of Developmental Services because they don’t meet the Department’s definition of intellectual disability.  We also have no objection to the establishment of a permanent autism commission.

But the omnibus bill, as it is being referred to, raises a number of concerns:

1. H. 4047 adopts a restricted definition of developmental disability that,  as we have previously noted, leaves out people with many types of disabilities other than autism and Prader-Willi Syndrome, which is a condition often associated with autism.  That restricted definition was a compromise, negotiated between DDS and a small group of legislators and advocates.  It has not had a public hearing and may violate both the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability.  Among the organizations withholding support for this restricted definition, in addition to COFAR, is the Disability Law Center.

2. The bill as a whole does not appear to have been considered by the Children, Families, and Persons with Disabilities Committee, which is the main committee of cognizance in the Legislature over DDS-related issues.

3. The original legislation establishing the autism commission (H. 3777), which was incorporated into H. 4047, does not appear to have been considered by the Children, Families and Persons with Disabilities Committee either.  That previous bill appears to have gone from the State Administration Committee to the House Ways and Means Committee before being incorporated into H. 4047,  without ever coming before the Children and Families Committee.

Our main concern about H. 4047 is that, as currently written, it would appear to violate the federal Rehabilitation Act (29 U.S.C.,  Section 794) and Article 114 of the Massachusetts Constitution. The  bill specifies DDS services for certain developmental disabilities but not others, such as cerebral palsy, epilepsy, spina bifida, and traumatic brain injury, and cognitive impairments such as Williams Syndrome.  This, on its face, would appear to be discriminatory and could potentially invite lawsuits.

H. 4047 defines “developmental disability” as a “severe, chronic disability of an individual 5 years of age or older that is attributable to mental or physical impairments resulting from intellectual disability, autism or Prader-Willi Syndrome.”  Prader-Willi Syndrome is a condition often associated with autism.

State law currently restricts eligibility for services from DDS to persons having an “intellectual disability” as measured by an IQ score of approximately 70 or below.  Intellectual disabilities are considered a subset of developmental disabilities.

Currently, thousands of people in the state are developmentally disabled in that they are unable to care for themselves or otherwise function adequately in society; yet, many of them are ineligible for services from the state because they do not have an intellectual disability.  However, even though it excludes thousands of people from DDS eligibility, the current eligibility standard is, in itself, not necessarily a violation of the Rehabilitation Act or the state Constitution.  That’s because it is based on an IQ threshold above which an individual is not considered by DDS to be intellectually disabled.

Ironically, in expanding the DDS eligibility statute to include people with autism and Prader-Willi Syndrome, the state may be opening itself up to a lawsuit because the distinction between disabled and non-disabled will no longer be based on a clear standard of measurement but rather on what appears to be an arbitrary list of developmental conditions. If you happen to have the right condition, i.e., autism or Prader-Willi Syndrome, you will get DDS services; but if you happen to have cerebral palsy or Williams Syndrome, you won’t get them.

Under a previous eligibility expansion bill that both COFAR and the DLC supported,  developmental disability was defined as a condition “attributable to a mental or physical impairment,” which results in “substantial functional limitations” in three or more “major life activities.”  Those activities included self-care, receptive and expressive language, learning, mobility, self-direction, a capacity for independent living, and economic self-sufficiency.  Like the current DDS eligibility standard, that previous definition of developmental disability attempted to distinguish between disabled and non-disabled persons.  It did not arbitrarily select some disabilities for inclusion and exclude others.

We understand the DDS’s concern that if eligibility for services is opened up to all persons with developmental disabilities, the state may be unable to afford the resulting costs of care. But adopting a seemingly arbitrary list of those who will be eligible and those who will therefore be excluded doesn’t seem to us to be the right solution.

Other states have found acceptable solutions to this problem, and we think Massachusetts should seek to join them.  In the meantime, we hope the Senate will send H. 4047 back to the Children and Families Committee, which can at least subject all of the provisions in the proposed legislation to a public hearing.




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