(Cross-posted from The COFAR Blog)
Bowing to criticism from families and advocates, the Patrick administration has promulgated new, final regulations that will loosen its restrictive definition of “intellectual disability” in determining people’s eligibility for services.
It appears that under the new regulations, the Department of Developmental Services will no longer automatically deny services to anyone who scores above a 70 on an IQ test.
The new DDS regulations refer to the American Association on Intellectual and Developmental Disabilities (AAIDD), which defines intellectual disability as involving “significant limitations both in intellectual functioning and in adaptive behavior.” The AAIDD also states that a limitation in intellectual functioning can be indicated by an IQ score as high as 75.
Meanwhile, the state Legislature has enacted a bill (H. 4252), which would similarly adopt the AAIDD definition of intellectual disability in Massachusetts. The bill, filed by Representative Dan Winslow, was on the governor’s desk as of today, awaiting his signature. COFAR is asking people to call the governor’s office to urge that the governor sign the bill into law.
In 2006, DDS adopted regulations restricting eligibility for services to people scoring 70 or below on an IQ test. This led to the denial of benefits to an undetermined number of people and to a lawsuit filed on behalf of a woman who had had scored 71 on an IQ test at age 18, 69 at age 40, and 71 at age 42. The woman, who was subsequently denied services by DDS, was represented in the case by Thomas Frain, who is also president of COFAR.
In July, the Massachusetts Court of Appeals ruled in the case that the DDS’s 2006 regulations were invalid in defining intellectual disability without referring to a “clinical authority.”
DDS initially responded to the Appeals Court ruling by proposing emergency regulations in September that named the Department itself as a “clinical authority” in determining the presence of an intellectual disability. But that led to a chorus of objections from advocacy organizations, including COFAR, and family members of intellectually disabled people.
In the final regulations, DDS has withdrawn the designation of itself as a clinical authority. However, questions remain as to how much weight DDS will place on factors other than IQ in determining eligibility for services. The Disability Law Center, a federally funded public interest law firm, is also concerned that in basing eligibility for services solely on intellectual disability, Massachusetts is failing to serve many people with other types of developmental disabilities, including many people with autism.
That concern was reflected in the testimony of dozens of people at a DDS hearing in November that members of their families with severe disabilities were falling through the cracks in the system and failing to get services from the Department.
The final DDS regulations nevertheless appear to be a step in the right direction. It’s also important, as has been discussed here on BMG, that the language in the regulations be enshrined into law — hence the importance of Rep. Winslow’s bill.
For too long, DDS has been allowed to do what it wants whenever it wants. The idea that they would try to make themselves “clinical authority” is a clear indication of this.
Nice to see the courts rule in favor of the people DDS is supposed to serve and remind them of exactly what their mission is supposed to be.
Kudo’s to Tom Frain and especially to this mother who had the courage to stand up for what is right.
On all these good outcomes. When you raised this last time I contacted Sen. Creem, who said she favored H.4252. I was happy to see it pass on Dec. 31. Better in the nick of time than not. Will contact the Governor.
Thanks to you for all your work on this important issue and to Rep. Winslow, to whom I was giving a hard time on another thread, for his.
contacting the governor on this.
Thank you for your efforts to keep the DDS honorable and responsive to all people with intellectual disabilities. It’s a tough challenge to get services when we have a vendor running the department, and a recent departed executive who had little experience at the job when she took it.