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The House lets down the most vulnerable
Have our legislators forgotten about the most vulnerable people in our society?
Unfortunately, that’s the message we’ve taken away from last week’s actions by the House on the state budget.
First, we urged legislators to approve an amendment calling for a comprehensive, independent study of the Department of Developmental Services system, along the lines of a similar study that was approved last year of the Department of Mental Health system.
Among the questions we think need to be examined are whether the ongoing privatization of services to people with developmental disabilities is really resulting in improved care. Or is this trend simply padding the ample salaries of the executives of the hundreds of corporate providers that contract with DDS?
We also urged legislators to approve additional funding to prevent the layoffs of state service coordinators, who make sure that people in the DDS system are getting the services they need. And we asked for additional funding to prevent the possible closures of state-operated group homes, to which many former residents of state developmental centers are being sent as those centers are closed down.
The House rejected all of those amendments. But they did pass an amendment that provides all kinds of goodies to the corporate providers, including a state subsidy if residents of their group homes opt to leave those homes. That amendment will implement the so-called ‘Real Lives’ bill, without bothering with the need for a public hearing.
Could all this have anything to do with the fact that legislators nowdays seem to act solely in the interest of those who contribute the most to their political campaigns? Is there anyone out there who still doesn’t believe that’s the way our modern “representative” system of government works?
Apparently, lawmakers don’t feel under much of an obligation anymore even to fulfill promises made to those who don’t have political clout on Beacon Hill, or Capitol Hill for that matter.
What else are we to make of the virtual promise that state Representative Patricia Haddad, a leader in the House, who spearheaded last year’s legislation to study DMH, made to support the DDS study?
In a meeting with families of residents of the state-run Glavin Regional Center in September, Haddad had this to say about the proposed DDS study, which would have included a study of the closure of Glavin itself:
“Someone has to be the first to say we’re not afraid to have an outside study done to tell us what’s wrong and what’s right,” she said. That day, she also said a number of other things that the Glavin families desperately wanted to hear from her, including the statement that “there are more horror stories than good stories” in the privatized system of DDS care.
It initially came as a shock to us, therefore, when we found out just before the budget debate last week that Haddad had declined even to co-sponsor the amendment to undertake that outside study of DDS. Maybe she truly feels that someone has to be the first to say we’re not afraid to have the study, but it wasn’t going to be her.
Why won’t legislators like Haddad support these critically important initiatives for our most vulnerable residents when push comes to shove? Is there anyone who doubts that we need to re-examine the DDS system? It is a system in which, as Haddad herself said, there are often more horror stories than good stories.
As the state has increasingly come to rely on corporate-controlled care for people with developmental disabilities, the waiting list for services only appears to be growing longer. It’s a system in which the state does a mediocre job at best in monitoring the care provided in thousands of dispersed residences whose staff are largely poorly paid and do not receive adequate training.
It’s a system that is beginning to resemble the “warehouses” of yesteryear, when thousands of people with developmental disabilities were packed into institutions that did not have the staff or resources to care for them. Now, they’re simply packed into corporate-run group homes, which don’t have the staff or resources to care for them.
When will our elected leaders wake up to this and care enough to do something about it?
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.
Update on the National Council on Disability’s anti-institutional bias
We wrote here before about the extreme ideological position of the National Council on Disability, which called last month for the closure of all residential facilities for persons with intellectual disabilities with more than three people living in them.
The NCD appears to be at it again, this time in the wake of the tragic shooting deaths of children and teachers in Newtown last month by a young man who may have had a mental illness or at least needed mental health treatment.
In a January 11 letter to Vice President Joe Biden, in Biden’s capacity as head of the president’s gun violence task force, Jonathan Young, chair of the NCD, appears to be more concerned about creating “an unnecessary expansion in institutionalization” than in ensuring that people who pose a danger to others get treatment or medication.
Young uses most of the letter to urge the vice president to avoid any measures that could unnecessarily institutionalize people, involuntarily commit them, or force treatment on them.
No one would disagree with Young’s contention in his letter that people who pose no risk of violence should not be subject to institutionalization or forced treatment. But Young says little about what the task force could or should do to protect everyone’s safety.
While COFAR’s mission is to advocate on behalf of people with intellectual disabilities, not specifically on behalf of people with mental illness, we are commenting on Young’s letter because much of the debate over deinstitutionalization of both groups of people has been similar. Certainly, Young and the NCD take the same view in favor of complete deinstitutionalization of both groups, and make the same flawed arguments about each.
In his letter to Biden, Young states that “institutional care has a long-standing history of poor outcomes and civil rights violation (sic) among persons with psychiatric disabilities.” At the same time, he bemoans a “profound shortage in community-based services” for people with mental illness.
There are a number of potential contradictions here. First, Young and many other institutional opponents gloss over the fact that many so-called community-based services are institutional in nature. The NCD, in fact, takes this viewpoint to an extreme. With regard to people with intellectual disabilities, the NCD has stated that even community-based group homes are institutional and should be closed down if they have more than three people living in them.
Young and the NCD can’t have it both ways. Young talks about a shortage of community-based services and yet he and the NCD want to dismantle much of the community-based infrastructure that exists for people with intellectual disabilities.
Secondly, while institutional care, whether of persons with psychiatric disabilities or intellectual disabilities, has certainly had its problems in the distant past, that care has come a long way. It’s deinstitutionalization, which has had the more checkered recent history and the poorer outcomes.
Here is an assessment in 2007 of the success or lack thereof of deinstitutionalization of the mentally ill, by the Kaiser Commission on Medicaid and the Uninsured.
The history of deinstitutionalization began with high hopes and by 2000, our understanding of how to do it had solidified. But it was too late for many. Looking back it is possible to see the mistakes, and a primary problem was that mental health policymakers overlooked the difficulty of finding resources to meet the needs of a marginalized group of people living in scattered sites in the community (my emphasis).
This marginalization of people living in scattered sites in the community is something we at COFAR have been saying for a long time with regard to people with intellectual disabilities. It’s distressing that the NCD, an independent federal agency that advises the president and Congress on disabilities issues, has apparently chosen to rewrite the real history of deinstitutionalization.
Young’s other major concern in his letter to Biden appears to be that safety-related measures under consideration by Biden’s task force, such as requiring colleges to refer students with perceived psychological disabilities for evaluation and institutionalization, might perpetuate a stigma or damaging stereotypes about mental illness. This concern on Young’s part appears to override his concern about the need such people might have for treatment.
We need to have a constructive discussion concerning the future of care for people with both mental illness and developmental disabilities. One way to begin is to stop the stereotypes and stigmas about institutional care.
DDS loosens IQ eligibility restrictions
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.
COFAR blog 