COFAR blog

After months of negotiations with a limited group of advocates for the developmentally disabled, key state legislators have approved a draft of a bill intended to expand services to people who are not currently eligible for help from the Department of Developmental Services.

The bill (H. 3715) would expand eligibility for residential and other services to people with what is now referred to as Autism Spectrum Disorder, although the legislation uses the older term “autism” to describe the group.  The bill also specifically mentions Prader-Willi Syndrome – a disability often associated with autism.

While a step forward, the compromise bill appears to leave out a number of other disabilities that are eligible for similar services in many other states, such as cerebral palsy, epilepsy, spina bifida, and traumatic brain injury, and cognitive impairments such as Williams Syndrome.

We understand top Patrick administration officials were concerned about the price tag in including a large list of developmental disabilities in the bill.  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, they are ineligible for services from the state because they do not have an intellectual disability.

The new bill, which appears to have been hastily drafted, would extend DDS services to people with developmental disabilities,  but would restrict the definition of a developmental disability to “a severe, chronic disability of an individual 5 years of age or older that is attributable to a mental or physical impairment’s (sic) resulting from intellectual disability, Autism or Prader-Eilli (the spelling should be Prader-Willi) Syndrome.”   The bill was approved on October 21 by the Children, Families, and Persons with Disabilities Committee and sent to the Health Care Financing Committee.

Colleen Lutkevich, COFAR Executive Director, cited, as an example of someone who would fall through the cracks of the new legislation, a person with normal intelligence but with a severe level of cerebral palsy that precludes him or her from being able to feed or toilet himself or herself.  Under the compromise bill, that person would not be considered developmentally disabled and therefore would still not qualify for services.  “Services are needed at all levels for people with all types of disabilities,” Lutkevich said.

A previous draft of the bill had not specified any developmental disabilities in expanding DDS eligibility, but had defined developmental disability 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.

That previous draft would have included people with disabilities such as cerebral palsy if those disabilities were severe enough to cause substantial functional limitations in three or more major life activities.  As such, the previous draft would have “focused pragmatically on the challenges faced by the individual and their family, and avoided leaving people to fall between the cracks,” as one advocate described it.

We are hopeful that the Legislature and the administration will find a way to include in this bill all those who are in need of DDS services.  Many other states have figured out ways to avoid leaving vulnerable people behind, and Massachusetts should be among those innovative states.