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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.
House leadership rejects politically correct view on sheltered workshops
In a welcome counter to some political-correctness-run-amuck in the Patrick administration, the leadership of the state House of Representatives is reportedly solidly behind efforts to preserve vital sheltered workshops in Massachusetts for people with intellectual and developmental disabilities.
As we reported last week, Rep. Brian Dempsey, chair of the House Ways and Means Committee, placed language in the Fiscal Year 2015 budget that would block the Patrick administration’s plans to close all remaining workshops in the state by June 2015.
As a result, the Department of Developmental Services prevailed on a House member to file a budget amendment (No. 282), which would remove Dempsey’s protective language from the bill. Corporate providers to DDS, meanwhile, began blaming COFAR for having thrown a monkey wrench into their plan to transfer participants from the workshops to their own provider-run daycare programs.
But we understand that the plans in the House are to quietly quash Amendment 282 during the budget debate, which starts on April 28. The scene will next shift to the Senate, where we hope the Senate Ways and Means Committee will place similar protective language for the workshops in its version of the budget.
Workshop proponents have spent the past week calling members of the House to urge their support for Dempsey’s line item language, which states that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”
As we’ve noted, DDS and the providers maintain that the sheltered workshops “segregate” developmentally disabled people by placing them together in group settings. This allegedly prevents them from reaching their full potential because they are not being placed alongside non-disabled peers in mainstream work sites. Citing that reasoning, the administration blocked all new referrals to the workshops as of this past January, and announced plans to close all remaining workshops in the state as of June of 2015.
While the administration’s reach-their-potential argument may sound reasonable in theory, it has no relationship to the experience of real people such as Kim Ryan and Gail Wayne, both of whom have been participants in a sheltered workshop in Newburyport for the past 20 years. Kim’s parents, William and Janet, said that Kim has tried seven different times to work in mainstream, community-based jobs, but has experienced either “social or emotional failures with each of these attempts.”
Martha Smith, Gail Wayne’s mother, said Gail has also worked in many community-based jobs, such as sorting mail in the Newburyport City Hall and working in the municipal library; but each of those jobs disappeared over the years for different reasons. Gail currently does volunteer work in a gift shop in Topsfield, but it is in the sheltered workshop that she has been able to work on a permanent basis and to earn a paycheck. “Her first love is the workshop,” Martha Smith said. “She feels completely secure there and wants to be there. She wants it to continue.”
Martha’s husband, Reid Smith, maintains that there are few full-time jobs available in the mainstream workforce for developmentally disabled persons such as Gail and Kim. Reid Smith adds that the term “sheltered” may be a misnomer. “It’s a workplace with a little more supervision,” he says. “I always urge people who happen to oppose them t go and see them.”
As part of its argument for closing the workshops, the administration has cited federal lawsuits in Oregon and Rhode Island, which are based on the segregated workplace argument. However, as we’ve noted, those settlements did not require the closures of all sheltered workshops as the Patrick administration is planning in Massachusetts.
It’s still worth contacting your state representative and Rep. Dempsey’s office to voice your support for these workshops, and to thank Rep. Dempsey for his support. The House Ways and Means Committee number is (617) 722-2990, and Rep. Dempsey can be contacted at Brian.Dempsey@mahouse.gov. You can find your own legislators at: http://www.wheredoivotema.com.
Ways and Means budget language would protect sheltered workshops
The House Ways and Means Committee has been listening to proponents of sheltered workshops for people with developmental disabilities, and has placed language in the Fiscal Year 2015 budget that would block the Patrick administration’s plans to close all remaining workshops in the state by June 2015.
As a result, corporate providers to The Department of Developmental Services are blaming COFAR for having thrown a monkey wrench into their plan to transfer participants from the workshops to their own provider-run daycare programs.
In an email sent to its members on Thursday, the Massachusetts Association of Developmental Disabilities Providers (ADDP) maintained that COFAR is “the only organized group that has objected” to the plan to close the workshops, and described COFAR as having “a small membership,” and as having been “formed to protest the closure of state institutions.” It’s always a sign that the leadership at the ADDP is getting flustered over an issue when they single out COFAR and inaccurately portray our mission.
In fact, COFAR has joined with a coalition of sheltered workshop proponents and providers in an effort to keep these popular programs operating in the state. It’s an uphill battle. Backed by the ADDP and the Arc of Massachusetts, the administration has already prohibited all new referrals to the workshops as of this past January as part of an “Employment First” initiative.
[UPDATE: As of Friday afternoon, several House members had signed on as co-sponsors to an amendment (Amendment No. 282) to the budget to remove the protective language for the sheltered workshops. We fail to understand how anyone could support the removal of these excellent programs with paying jobs for intellectually disabled people. Please ask your legislator and Rep. Dempsey to reject Amendment 282.]
As we’ve noted, the administration, the federal government, and their friends in the corporate provider industry argue that sheltered workshops are politically incorrect because they allegedly “segregate” disabled people from non-disabled peers by placing them in congregate-care settings instead of in mainstream employment, and they often pay below-minimum wages. But many families of the participants maintain that the programs provide them with useful skills and meaningful activities, and that there is nothing about them that segregates or isolates people.
Moreover, the workshop proponents argue, the administration’s contention that mainstream employment opportunities exist for all or even a significant number of developmentally disabled persons is largely wishful thinking. It’s hard for anyone to get a job these days. If sheltered workshops employing hundreds of developmentally disabled persons throughout the state are closed, most of those participants will end up in DDS daycare programs, many of which offer few skill-based activities, much less any sort of wages for performing them.
Nationally, an online petition to save sheltered workshops around the country garnered more than 3,000 signatures.
In its version of the FY ’15 budget released this week, the Massachusetts House Ways and Means Committee inserted language into Department of Developmental Services Line item (5920-2025), stating that DDS “shall not reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”
The language, however, appears to be contradicted by Outside Section 102, which the Ways and Means Committee also placed in its budget plan, which requires the DDS to submit a report to legislative committees each year “until the full implementation of the employment first initiative.” The section also refers to “the transition from sheltered workshops to programs under the employment first initiative.” Nevertheless, the ADDP email this week voiced concern that the House Ways and Means line item language would “prevent the expected June 2015 closure of sheltered workshops,”and stated that the ADDP, the Arc, and DDS “will seek to have this language withdrawn.”
Among the reasons given by the ADDP for closing the workshops in Massachusetts was the possibility of a federal lawsuit against the state by the “litigious prone” U.S. Department of Justice and the federal Disability Law Center of Massachusetts. We would note, though, that while the DOJ has taken legal action in Rhode Island and Oregon alleging that sheltered workshops segregate participants in those states, even the DOJ hasn’t called for closing all of those shelters down. In a January 2014 letter to the Rhode Island attorney general, the DOJ Civil Rights Division left room for maintaining sheltered workshops for those participants who chose to stay in them (see the final paragraph before the conclusion on page 32.)
No such choice will be available for Massachusetts residents if the Patrick administration, the Arc, and the ADDP are allowed to carry out their plan to close down all sheltered workshops in this state.
To contact the House Ways and Means Committee, call (617) 722-2990. The chair of the Committee is Representative Brian Dempsey, who can be contacted at Brian.Dempsey@mahouse.gov. You can find your own legislators at: http://www.wheredoivotema.com.
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