[Note: COFAR sent a notice on Wednesday to media outlets around the state about this public hearing scheduled for Thursday in Worcester. Not one newspaper or TV reporter showed up. This is a shame.]
Familes decry DDS’s ‘rigid cutoff’ in providing services
Janet Suarez’s 22-year-old daughter Amanda cannot complete basic hygiene and is “unaware of physical boundaries,” putting her at risk of, among other things, sexual abuse.
Yet, DDS has disregarded the recommendations of clinical experts, Suarez said, and denied her daughter services. “She stays at home most days,” Suarez said. “She’s discouraged.”
Suarez was among a parade of people who testified at a public hearing at the Worcester Public Library on Thursday on state regulations governing eligibility for services from the Department of Developmental Services.
It was the same wrenching story again and again as the parents of developmentally disabled children talked about how the regulations have allowed DDS to deem their children ineligible for services because they had scored slightly above the cutoff score of 70 on IQ tests administered by the Department.
Speaker after speaker talked about how their now-adult children are overwhelmingly ill-equipped to cope with society. Most said their children have virtually no social skills or means of adapting to social norms. Many of those disabled individuals are unable to or can barely speak.
The parents talked about their desperate need of services from DDS and about their sense of despair and isolation when those services were denied. In most cases, the family members stated that psychologists had found that their children had severe adaptive problems; yet, DDS had disregarded these findings in focusing solely on IQ scores.
COFAR has joined with the Disability Law Foundation, the Arc of Massachusetts and other organizations, including the national VOR, in urging DDS to change its regulations, which have given the Department the latitude to deny services to anyone scoring above a 70 on an IQ test.
DDS is also facing a court order stating that it must tie its determinations of intellectual disability to a “clinical authority,” and not base its service eligibility decisions solely on IQ measurements. But DDS emergency regulations, adopted in the wake of the court order, still appear to give the Department excessive discretion to rely on IQ scores, according to COFAR, the DLC, and the other advocacy groups, which provided testimony on those regulations on Thursday.
Eric Olson testified that his son Matthew has scored between 70 and 80 on IQ tests, making him ineligible under the DDS regulations for services; yet he cannot function without support. While his son received special education services, he attended work programs. In the past several years, “he’s been without significant work. He’s completely idle and isolated,” Olson said.
Donna Frank is the mother of two sons with autism, one of whom was rejected by DDS for services because his IQ was measured above 70. Ryan cannot cross a road safely and has had to be physically restrained many times while in school programs, Frank said. She said he has no concept of the difference between clean and dirty, and often comes home from school wearing other children’s clothes. Like many parents, she said she will have to quit her job to care for him when he turns 22, two years from now.
Also testifying was Gary Siperstein, Director of the Center for Social Development and Education at the University of Massachusetts Boston. Siperstein maintained that thousands of people with developmental disabilities go without services from DDS because “the regulations demonstrate a lack of flexibility that limits the number of people found to have intellectual disabilities.”
The emergency regulations, Siperstein continued, make it optional for the Department to even consider the standard error of measurement on an IQ test.
While DDS appears to have dropped language that would name the Department itself a “clinical authority” in determining the presence of intellectual disabilities, the regulation still inappropriately lists the Department as the “state intellectual disability authority,” according to Richard Glassman, litigation director with the Disability Law Center.
Glassman maintained that given the thousands of people in Massachusetts who have developmental disabilities and yet are not considered intellectually disabled by DDS, the Department needs to provide services on a broader basis. “We are raising a generation of young people who are spending their days in their bedrooms playing video games and watching TV,” Glassman said. “Their only real tie is to the Nintendo Corporation.”
Nirith and David Avraham testified on behalf of their son, who is 21 years old and autistic and was sitting with them in the hearing room. The young man would frequently rock back and forth in an agitated manner while his mother and father tried to calm him. Recent immigrants to this country, Nirith and David Avraham said that while their son is a very good artist, he can’t speak and has no social judgment. Yet, he was denied services after his IQ was measured at 72.
“It’s just me and and my husband to take care of him,” Nirith Avraham said. “”We have no network.”
Joan Durkin testified that her daughter, a single mother, is becoming desperate about what will happen to her own 21-year-old daughter, Annie, who has autism and obsessive-compulsive disorder, yet has been denied services because of an IQ measured at 71. Durkin said her granddaughter is non-verbal, has no problem-solving skills and needs 24-7 care. “Yet, DDS says she has no intellectual disability,” Durkin said.