Like at least two other bills signed into law this month, a new law that will make adults with autism and certain other conditions eligible for services from the Department of Developmental Services was the subject of closed-door negotiations between key legislators, selected advocates, corporate providers, and the department during the past legislative session.
The problematic definition of “developmental disability”
The new law specifies that in addition to people with intellectual disabilities, people with autism and conditions known as Prader-Willi Syndrome and Smith-Magenis Syndrome will be eligible for DDS services. Until now, state law has restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test.
The existing eligibility standard has left out many people with developmental disabilities, including autism, even though those conditions may severely restrict an individual’s ability to function successfully in society. If those people score higher than 70 on an IQ test, they are routinely denied services.
In addition to changing that standard, the new law establishes a permanent new autism commission and authorizes the establishment of tax-free, individual savings accounts to pay for a variety of DDS and other services.
We have written before about the lack of services available to people with autism, Prader-Willi Syndrome, and other developmental disabilities. It’s unclear, however, how many additional people will be helped by the new law and how many will be left out, in part because of the way the law was drafted, and in part because it is unclear how many people with developmental disabilities currently go without services in Massachusetts. The administration does not maintain a publicly disclosed waiting list for services.
We are glad to see that the Legislature has recognized that having an intellectual disability is not necessary to establish that an individual has severe functional limitations and needs DDS services. The Disability Law Center (the DLC), a federally funded legal advocacy organization in Massachusetts, maintains that Massachusetts is the only state in the nation that has had such a narrow standard for eligibility for services.
But in specifying three additional conditions that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that can and often do result in many of the same types of functional limitations, such as Williams Syndrome, spina bifida, and cerebral palsy. We raised concerns about that aspect of the legislation earlier this year, noting that the selection of the specific conditions listed in the legislation was not subject to a public hearing before the Children, Families and Persons with Disabilities Committee, but was the result of closed-door negotiations.
A post currently on the The Massachusetts Association of Developmental Disabilities Providers (ADDP) website homepage states that the ADDP’s affiliated organization, the Arc of Massachusetts, played a key role in those final negotiations over the DDS eligibility law and the two other new laws as well — the national background check and Real Lives laws.
COFAR and the DLC supported a previous definition of developmental disability in the DDS eligibility legislation, which did not specify a limited number of conditions, such as autism or Prader-Willi Syndrome. The previous definition stated only that a developmental disability involves “substantial functional limitations” in three or more “major life activities,” which include such things as self-care, “receptive and expressive language,” learning, mobility, the capacity for independent living, and economic self-sufficiency.
We have noted that specifying certain conditions as eligible for state services and leaving out others may violate both the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability. Withholding support for this restricted definition, in addition to COFAR, is the DLC. As one advocate noted, the addition of three specified conditions for DDS eligibility to the existing requirement of intellectual disability “does very little to move us out of the bottom tier of all states” in the narrowness of the state’s eligibility criteria for services.
The lack of a state-care option
Another potential problem with the new law has to do with the makeup of the permanent autism commission. The commission specified in the law will consist of 35 members, including legislators, administration officials, the Arc of Massachusetts, and advocates from autism advocacy organizations. There are no seats on the commission for any advocates of state-run care for the developmentally disabled.
We think this is an unfortunate oversight in the makeup of the commission because we believe that state-run group homes and other facilities will be needed to accommodate the influx of new people who will become eligible for care under the new law. As we have pointed out, the administration has been underfunding and even dismantling state-run care options for people with intellectual disabilities, and designating provider-run settings as their only option in most cases.
With potentially thousands of people added to the DDS eligibility lists as a result of the new law, a large percentage of that population will still not be able to get residential care or services due to a lack of DDS resources for community-based care. If DDS continues to close state-operated group homes as it has been doing, this is only going to continue to make the situation worse.
State-run residential care is provided in Massachusetts by staff with better pay and training than is usually available in provider-run facilities. As a result, we think an advocate of state-run facilities on the autism commission would introduce a needed point of view in the commission’s deliberations.
We did support the addition to the autism commission of a member with clinical knowledge of Smith-Magenis Syndrome. Amendments to the legislation, which added that member to the commission and added Smith-Magenis Syndrome (SMS) to the conditions listed in the law, were filed on behalf of the Duzan family, whose daughter, Sara, has SMS. The amendments were adopted.
As we have reported, Sara Duzan has been subjected for many years to poor conditions and treatment in provider-run residential facilities, according to her family. Part of the problem in her care has been that few providers are knowledgeable about SMS, which is often characterized by behavioral outbursts. As a result of that lack of knowledge, Sara has often been subjected in residential facilities to the inappropriate use of restraints. In addition, members of the Duzan family themselves have often been inappropriately and unfairly blamed by providers, probate court judges, and even clinicians and state administrators, in our view, for causing Sara’s outbursts.
Another area of uncertainty in the new DDS eligibility law concerns its authorization of so-called ABLE accounts, which allow families of developmentally disabled people to establish tax-free savings accounts for expenses including education, housing, and supports and services. It is unclear what relationship these accounts might have to “individual budgets” established under the newly signed Real Lives law. We have expressed concern that those individual budgets do not appear to fall under the control of guardians of disabled clients.
Like the Real Lives law, which provides for the involvement of private financial managers in administering clients’ individual budgets, the new DDS eligibility law provides for the authorization of private entities to manage individual ABLE accounts.
As is the case with the national background check and Real Lives laws, we hope that the Legislature addresses the problems we have identified in the DDS eligibility law in its upcoming session.