Home > Uncategorized > Compromise bill expands DDS eligibility to some, but not all people with developmental disabilities

Compromise bill expands DDS eligibility to some, but not all people with developmental disabilities

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.

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  1. R Faucher
    October 29, 2013 at 2:37 pm

    My question is: where have folks with Autism and Prader-Willi been going for services?

    Since you say ‘ Services are needed at all levels for people with all types of disabilities’, there always seems funding is more than likely legislated at the beginning to increase coverage for other than the DD population, it’s the future funding that may not be forthcoming or annualized. I agree everyone with a disability, as defined, should be given assistance as and when needed. The main question is funding over the long term and will it open up to folks coming from other states to take advantage of the benefits thus drawing hard on the present level of funding.

    I thought Autism was funding in the current DMR budget? Am I wrong on this?

    • October 29, 2013 at 2:54 pm

      In reply to your question, many people with autism and Prader-Willi have not been getting any services. As the post notes, only those people who are found to have an intellectual disability can currently get services in Massachusetts, meaning their IQ has to be measured at approximately 70 or below. So, even if they have autism or another disability that prevents them from being able to function in society, they will not be able to get services if their IQ is over 75 at the lowest.

      • R Faucher
        October 29, 2013 at 6:24 pm

        Hi,

        Where is the funding coming out of or from?

      • October 29, 2013 at 6:52 pm

        The funding comes from the DDS budget.

      • R Faucher
        October 29, 2013 at 9:08 pm

        Hi David….Exactly my point….That is where education of our legislatures need to be ramped up…..I know it is an on going battle,,,but if the budget is not increased for these services well it becomes a squeaky wheel thing. I am all for getting any and all benefits for our most vulnerable, but as you know at what cost to those now getting services. That is where COFAR, The ARC and area boards have to get on the train to ‘educate’ our legislatures. One of the best sources are the families of those who are in need of these services to visit, write or call the legislatures so the HR 3715 does not fall between the cracks.

      • October 29, 2013 at 9:45 pm

        You’re exactly right!

  2. October 29, 2013 at 2:51 pm

    It is sadly ironic that DDS considers sheltered workshops a “segregated setting” and, therefore, inappropriate for future placement of DDS consumers. There are some people who greatly benefit from this work-for-pay model. If DDS’ anti-segregation standard were uniformly implemented, thousands of DDS consumers would lose their placements in day habilitation programs and adult day health programs, which serve the DD/ID population in significant numbers. Community residential homes could not function if federally-funded day programs were eliminated. DDS’ rejection of sheltered workshops is more likely attributed to money. Currently, the federal government does not fund sheltered workshops, but the feds pay millions of dollars in community Medicaid money to fund day habilitation and adult day health programs Moreover, many community day hab programs are located in segregated industrial parks or isolated strip malls, Segregation abounds in the DDS “PC-approved” service world.
    The broader reality is that, depending on the level of need, individuals with disabilities sometimes require specialized, supportive environments that more “typical” people do not need. Why can’t DDS and other advocates embrace the truly individualized needs of all people, and quit judging? Let individuals with disabilities and their representatives decide what is acceptable, rather than government.

  3. Carla Charter
    December 1, 2013 at 4:30 am

    I am a parent, writer and also work on
    legislative advocacy issues regarding special needs.
    By leaving out some disabilities, the bill not
    only effects that person but family members who are responsible for
    that person, for without the ability to access needed services needed
    for a family member, that person must take on more of the caretaking
    and financial responsibilities.
    My other concern is that the legislation is discriminatory and
    flies in the face of a basic amendment to our state constitution. In
    Article CXIV of the Amendments to the Massachusetts Constitution It
    states ” No otherwise qualified handicapped individual shall, solely
    by reason of his handicap, be excluded from the participation in,
    denied the benefits of, or be subject to discrimination under any
    program or activity within the commonwealth.”
    If this legislation passes, when do we start crossing the line into
    gray areas which discriminate against other groups rights? I have sent to the Joint Committee on Health Care Financing regarding this legislation.

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