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Autism Commission report has important recommendations, but funding remains a question
A state report released last week contains a number of important recommendations to begin to deal with the yawning gap in services, job opportunities, and housing for what may be the fastest growing group of developmentally disabled people in the state and the country.
The Governor’s Commission on Autism listed 13 priorities in addressing the problem, including expanding the number of people eligible for care from the Department of Developmental Services, expanding available community-based services, and expanding private insurance coverage available to families of autistic children and adults.
One apparent shortcoming of the report — and we’re not saying it would be easy to address that shortcoming — is that the report doesn’t say where the money would come from for all of these necessary expansions. It doesn’t appear that even Governor Patrick’s proposed tax increases to fund his Fiscal Year 2014 budget would come close to providing the needed funding for what the Commission notes needs to be done.
It’s somewhat ironic that even as the governor’s Commission calls for these service expansions, his proposed budget would cut funding to the state Autism Division, which manages a key children’s program that the Commission has proposed expanding.
The Massachusetts Budget and Policy Center’s budget browser shows an inflation-adjusted cut in the governor’s FY ’14 budget proposal of 2.6 percent from the amount appropriated for the current fiscal year for the Autism Division.
It’s also ironic, looking back on it, that then Secretary of Health and Human Services JudyAnn Bigby told The Boston Globe in 2008 that the planned closures of four state developmental centers for the intellectually disabled would free up some $45 million a year for community-based programs, including services for people with autism.
Since that time, close to $70 million in inflation-adjusted dollars has been cut from the developmental centers line item in the budget. But that money does not appear to have been used to boost most community-based line items. Funding for the Autism Division has, in fact, declined by about 5 percent since Fiscal Year 2009. (Again, these numbers are based on the MBPC’s budget browser.)
Nevertheless, we applaud the Commission for calling further attention to the current lack of adequate services for children and adults with autism, and for its endorsement of proposed legislation in the current session to expand DDS’s responsibility to care for people with autism who don’t currently fit within the Department’s eligibility guidelines (H. 78 and S. 908).
The report criticized inadequate staffing levels in community-based residential care for people with autism and low compensation of staff, which has led to high turnover. The report also noted that many adults with autism live with elderly parents and have “few options for future housing and support.” In addition, the report cited “an unknown backlog of people who would apply for aid if relevant programs existed.”
And the report called for hiring “highly trained service coordinators specially trained in autism.” The report didn’t discuss how this would be done, given that the state has been steadily eliminating service coordinator jobs in recent years.
Nevertheless, we’re glad the Commission put all these things on the record and showed, if nothing else, that they are of concern to state policymakers.
Familes decry DDS’s ‘rigid cutoff’ in providing services
[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.]
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.
Eric Olson (at podium) testifies at a public hearing Thursday about the isolation his son has endured after being denied services by DDS.
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 in 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.
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