(Cross-posted from The COFAR Blog)
Lauren Baletsa has Prader-Willi Syndrome, a genetic defect that causes such a strong compulsion to overeat that she forged her father’s signature on checks to buy food.
Baletsa was one of dozens of people who testified on Tuesday before the Legislature’s Children, Families, and Persons with Disabilities Committee in support of proposed legislation that would require the state to provide services to people with Prader-Willi and other developmental disabilities.
Many people with these disabilities have cognitive impairments and autism, leaving them unable to function normally or adequately in society. However, many of them have IQs that are just above the cutoff level to qualify for services from the Department of Developmental Services.
In testimony before the Committee, Rick Glassman of the Disability Law Center maintained that Massachusetts appears to be the only state in the nation that does not grant eligibility for services unless the individual has an intellectual disability as measured by an IQ score.
Glassman said research done by the DLC indicates that every other state provides services based on at least some additional measures of disability such as substantial functional limitations or designated impairments such as autism. “I hope I’m wrong about that and am missing something,” Glassman said. “But if so, I can’t figure out what it is.”
Glassman and other advocates, including COFAR, noted that DDS’s restrictive eligibility standard for services has left thousands of people in the state without services of any kind. COFAR has joined the DLC, the Arc of Massachusetts, the Aspergers Association of New England and other organizations in urging support for legislation (H.B. 78 and similar measures) that would require DDS to provide services to people with developmental disabilities and not just “intellectual disabilities.”
As Glassman and others pointed out, just because someone has an IQ higher than 70 (the DDS’s approximate cutoff level for providing services) does not mean that person is high functioning or able to complete even basic tasks such as dressing or bathing without assistance.
Awilda Torres is a case in point. She testified Tuesday that her son Carlos, 22, who has autism, was recently riding in a van when he jumped out while the van was moving, ran to a policeman and insisted he had been kidnapped by the driver. Carlos’s IQ, Torres said, is just above the DDS cutoff point for services.
Other parents of autistic adults testified that while services and even state-supported day and work programs were available to their children before they turned 22, those programs ceased once the children reached that age. At the age of 22, people with intellectual disabilities in Massachusetts, who had been receiving special education services through local school districts, must enter the DDS system with its more restrictive eligibility standard.
Karen Kadzen-Pandolfi testified that her son, who is now 23, lost his services a year before because his IQ was measured at 71. He has a problem with aggression and violent behavior. As a result, she must now stay home from her job to care for him. “My life is on hold,” Kadzen-Pandolfi said. “I keep searching for an answer, but there are no answers.”
Delivering COFAR’s testimony, I noted that the public is largely unaware of the severity of these developmental disabilities and of the fact that so many people are not receiving any services to cope with them. Tuesday’s hearing at the State House was not covered by any mainstream media outlets nor was a similar hearing last November in Worcester that had been held by DDS to consider proposed regulations regarding its IQ eligibility standard.
Recently Atty Tom Frain (COFAR President) won a court case regarding elibility criteria. Perhaps I misunderstood, but I thought that would require changes to regulations regarding eligibility criteria.
the standard error of measurement and related factors in measuring IQ levels. As a result, DDS can no longer establish an absolute cutoff at an IQ of 70 or above, but will allow people who score a few points higher to quality.
However, DDS still relies largely on IQ scores and evaluates applicants only for intellectual disabilities. It does not consider other developmental disabilities, which is a wider group of impairments, as explained in the post. People with some forms of autism can score in the normal range on an IQ test and still be unable to walk down a street safely, for instance, because they are unaware that cars will run them over. Technically, though, they don’t have an intellectual disability and therefore do not qualify in Massachusetts for any services.
Hope that explains the distinction.
for clarifying that. I was obviously unclear about the impact of the case and equally unclear about the “developmental” vs “intellectual” disabilities aspects of receiving services.
DDS=Department of Developmental Services. The name is certainly misleading don’t you think?
DDS’s name is misleading at the present time. In DDS’s defense, I understand that there have been some discussions between the Department and the Aspergers Association, the leading proponent of H. 78, around the potential costs of the proposed legislation.
At Tuesday’s hearing, Rep. Khan, the House chair of the Children and Families Committee, said she was looking forward to working with the proponents and DDS on a draft of the bill that might be acceptable to all sides. I’m not clear on what thaat would be or whether this has a chance passage this year.
One of the reasons DDS has a cut off is because there is a limit to the funds they have. I can’t think of anyone I work with that wouldn’t love to serve everyone that would benefit from services. What we need is more money going to DDS and DMH.
There are probably thousands of disabled persons in MA who are eligible for services who are not receiving services and that is not entirely due to a shortfall of funds. Services are not distributed in a fair and equitable manner. Sometimes funds are misspent.
It seems that those in administration are more interested in maintaining the status quo than doing the right thing. They had a good idea what would happen when they changed their name and stopped using ‘mental retardation.’
Thousands of square pegs, but only round holes to be found, and all of them one-size-fits-all. This agency is exclusionary, not inclusionary, and not by accident.
All of which underscores the need for oversight and accountability for this agency—whatever they call themselves.