Home > Uncategorized > New DDS eligibility law will leave many out in the cold

New DDS eligibility law will leave many out in the cold

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.

And like the new “Real Lives” and national background check laws, the resulting omnibus DDS eligibility law, while well-intentioned, raises a number of uncertainties and questions.

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.

Other issues

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.

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  1. Anonymous
    August 20, 2014 at 5:34 pm

    The biggest problem with all this is how it came to be and the selected participants in the negotiations, who chose to select which disabilities would be eligible, and in the process, leaving other disabilities out. Of course, they knew that would happen: “closed-door negotiations between key legislators, selected advocates, corporate providers, and the department.” Clients, family members, and guardians need a seat at the table as well. Furthermore, it is a clear conflict of interest for corporate providers. I don’t see how this will benefit disabled persons. We should not be passing laws for the express benefit of the Arc and their providers.

  2. elizabeth
    September 2, 2014 at 1:41 pm

    I understand that the family of the child with SMS was having many issues, but when I looked up about how common the syndrome is, it says they think that 1 in 25,000 people MAY have it. They also say they have only about 600 documented cases. I have a hard time accepting that this syndrome has been named as one that can qualify for DDS. It sounded as though she might already be in a state funded home. SO…she must be getting services already, maybe from DMH? If that is the case, why should a person with a rare genetic syndrome have precedence over other more common syndromes that have VERY similar issues (actually even MORE anomaly’s)to be eligible for DDS when they are ALREADY getting services? Wouldn’t it be cheaper for the state, and more fair to people with other more common, severe genetic syndromes, to just revise their way of providing care and support to these people in those programs that are being mentioned? I KNOW that there are people with other syndromes who have very severe outbursts and mental health problems who are also getting the same treatment as this person with SMS did. What is being done for THOSE people who are left behind in those homes where they are getting unnecessarily restrained and chastised because the care givers/court don’t recognize the difficulties of this syndrome? Those people left behind look behaviorally similar, and probably could not be picked out from SMS. SO WHY SHOULD THEY GET LEFT BEHIND JUST BECAUSE THE DESCRIPTION DOESN”T ALLOW THEM INTO DDS ???? This is just very, very wrong. My daughter has 22Q11.2 deletion syndrome(1 in every 2000-4000 people), and she does not qualify for any services because her IQ is 76. Luckily, my daughter’s mental health is currently being SOMEWHAT controlled by meds, but there are large number of 22Q’rs who sound just like the person with SMS. In school I had to fight all the time with teachers and counselors…and I can’t tell you how many doctors…about my daughters behaviors. It was hell. And that was when she was in school. With bigger kids come bigger problems. My daughter is again hanging out with the lowlifes of the town. About 2 years or so ago she got involved with pot and drinking and fell into a pit for a while. She was buying alcohol for underage kids. She moved into her own apartment (rented to her from a relative , very cheap…she gets SSI) and partied every night. I finally got her to move to the Cape into a house with 2 males who had disabilities. She had been there just over a year when everything blew up a few days ago. Now she is moving home, and my hopes of her staying safe and making a life for herself are back to square one. The Spfld area is awful for a person with hidden disabilities. She gets pulled into things so easily. She could eventually get arrested for something because she associates with the wrong people. She would have a record for life. Worse, what would happen to her if she went to jail???? She would never make it in there. She is a very sensitive girl, who deep down, is still a little child looking for guidance from me. And how about the great big money hungry state of MA???? Just imagine how much it costs to house a prisoner every month. Wouldn’t it be economically smarter (because I know everything is about the bottom line) to plan for the future NOW, by giving our kids the support they need now, rather than waiting until they end up in the court/prison system where they SHOULD NOT be? Would they rather that kids like mine with 22Q and other syndromes that manifest themselves in a fashion similar to the SMS kids mentioned, end up costing the state even MORE than they would have if they had provided the needed supports for our kids NOW…like they are now going to provide for the person with SMS???? Can someone make sense of this to me?????? I have been trying to get help for my daughter left and right, to no avail. Now that she is back home I am terrified about what she might get into again. She needs to be in a community of people similar to herself…people who are not severely disabled( mentally).She should not be in a community where she has easy access to people who party and are irresponsible, where she will get into trouble (in addition to the possibility of addiction). She did fine when she associated with people like herself. It was like her own community. They were all disabled, but not behaviorally disabled. I did not worry about her. So please, someone help me here…

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