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Father writes about how he and his son finally broke free of the grip of Applied Behavior Analysis
John Summers, a writer with whom we frequently correspond on disability issues, is a Cambridge parent who followed recommendations from doctors to seek Applied Behavior Analysis (ABA) services for his developmentally disabled son Misha.
ABA is the primary form of clinical treatment in Massachusetts and around the country for persons with developmental disabilities, and particularly for children with autism.
But in an essay he wrote for the Ideas section in this coming Sunday’s edition of The Boston Globe, Summers, who is a Research Fellow in History and Disability at New America, gives a compelling and moving account of how ABA failed his son, and how both of them finally broke free of it.
One of Summers’ key criticisms of the ABA system in Massachusetts and other states around the country stems from his finding that no state agency collects data on ABA. “It makes no sense,” he said in an email to us. “They are running a collective experiment on these children and not asking for any results. Given the state’s history with disability, that’s troubling.”
Summers wrote to us that MassHealth’s spending on ABA jumped 200% between 2017 and 2021. MassHealth began funding ABA services in 2017. In Fiscal Year 2021, he said, MassHealth spent $140.5 million on ABA services for 6,227 clients, for an average cost per child of $22,563.
“Yet,’ he wrote, “Massachusetts isn’t trying to find out what escalating public investment in this treatment is achieving, much less what harm it may be doing.”
We would be interested in hearing from our members as to their experiences with ABA for their loved ones in the DDS and special education systems. It’s possible that many clients have been helped by it. Summers says that for Misha, it was a futile ordeal.
Summers had placed his son, who is now 11, in ABA programs from the time Misha was just under two years old. Mishas was steered there, Summers said, by his Early Intervention program. Yet somehow, the years of treatment didn’t seem to be helping him.
ABA school attempted to quash essay
Summers said that Melmark New England, one of the ABA schools that he discusses in his Globe essay, hired Regan Communications, the powerful Boston public relations firm, to try to prevent the Globe from publishing his essay. Ultimately, Melmark was unsuccessful in stopping publication of the article.
“It was a revealing move,” Summers says, “that betrays a lack of compassion behind the smiling corporate face.”
ABA based on the theories of B.F. Skinner
A couple of years ago, Summers writes in his essay, he began doing research on ABA. He found that it stems from the behaviorist school of psychology, which was pioneered in the 1950s and 1960s by B.F.Skinner. Skinner engaged in what Summers describes as a “revolt against the traditional subject matter and methods of psychology.”
Summers notes that under the behaviorism model, “the inner life of motivation and sensation, will and judgment, thought and feeling” are disregarded because they can’t be measured. Those things lack what Skinner described as “the dimensions of physical science.”
As Summers put it, Misha’s behavior analysts “restricted themselves to observing his physical operations, devoid of subjective or personal meaning, so that they could be measured with the same tape, as it were.” In sessions that could last several hours a day, Misha’s behaviors deemed appropriate were rewarded by “reinforcers” such as gold stars. Negative reinforcers such as withholding attention were used for his behaviors that were deemed inappropriate.
But failing by the ABA measuring tapes to make expected progress in an ABA school in Cambridge, Misha was sent to a Melmark school in Andover. According to Summers, “Melmark clamped a vise grip around him.” In an observation room, “behind a one-way mirror, an ‘educational coordinator’ monitored his compliance with ‘appropriate social interactions’ in class.”
Still, none of it worked. The program wasn’t able to teach Misha how to brush his teeth, speak, or read at the level of children his age. Yet, the rigidity of the program’s methods frustrated Misha who engaged in bouts of crying and tearing out his hair there.
Summers had seen enough. In March, he enrolled Misha in the Perkins School for the Blind in Watertown, which agreed to “scrub every trace of ABA from his IEP (Individual Education Plan).” Misha still can’t brush his teeth without help, but he is finally in a program that he enjoys and where he is given the freedom to have what Summers describes as an inner life.
Behaviorism largely debunked
Summers notes in his Globe essay that behaviorism is no longer an influential school in the field of psychology. One of the few areas it is still practiced is in the treatment of persons with developmental disabilities. In those school settings, autistic students are largely segregated from the rest of society.
It’s ironic because states such as Massachusetts, which rely on ABA, nevertheless subscribe to an ideology that congregate care for people with I/DD is universally bad because it segregates them from the wider community. Of course, that ideology leads to all kinds of contradictions, particularly the mistaken assertion that small group home settings are fully integrated into the community.
Private equity takeover of some ABA schools
Summers also told us that his research has revealed that because ABA schools have become so widely supported by government funding, the schools have increasingly become a focus of investment by private equity firms.
Summers said that of the total of 92 ABA schools certified by Early Intervention in Massachusetts, he found that at least five are owned by private equity companies. He said he asked the Massachusetts Department of Public Health (DPH), the lead administrative agency for Massachusetts Early Intervention programs, “whether they were concerned about this, but received no answer.”
Summers said the five ABA schools he found to be owned by private equity firms are Key Autism Services (owned by Cane Investment Partners); Butterfly Effects (Moran Capital Partners); Autism Spectrum Therapies / LEARN Behavioral (Gryphon Investors and PineBridge Investments); Behavioral Healthworks (TA Associates); and Mentor South Bay (Sevita).
As noted, we would welcome your comments about your experiences with ABA.
Video has a controversial and disturbing, but important message about autism
Several advocacy organizations for people with autism have produced a disturbing video that conveys an important message.
The message, which is actually controversial, is that autism can be a debilitating condition for some people. Contrary to what has become a politically popular ideology, there are people with developmental disabilities who cannot function in mainstream society.
The video, sponsored by Act Now for Severe Autism, the VOR, the National Council on Severe Autism (NCSA), ICF Advocates for Choice, and other organizations, displays severe autistic behavior in graphic detail, and therefore may be difficult for some people to watch.
Many people, however, may not be aware that autism is a “spectrum disorder,” which the Autism Research Institute (ARI) describes as appearing “in a range of forms and levels of severity.”
The video shows children with very severe autism engaging in violent behavior, mainly against themselves. They scream and hit themselves repeatedly in the head, or bang their heads against hard objects – hard enough to cause serious injuries such as detached retinas. They physically attack caregivers and family members, leaving them injured as well.
It is difficult to watch, but videos like this are necessary to convey an inconvenient truth about developmental disabilities to the public and to policy makers and journalists, and even to misguided activists for the disabled. Many of these policy makers and activists have promoted the mistaken ideology that every individual has unlimited potential for achievement in mainstream society, and that autism is not even a disability.
As the NCSA stated in a letter to The New York Times, this viewpoint even led one author to advise parents of children with autism that their children are “perfect.”
And as noted below, this ideology has been associated with the closure and privatization of congregate care facilities for persons with developmental disabilities and with efforts to end guardianship of those persons by family members.
But as Lee Elizabeth Wachtel, medical director of the Neurobehavioral Unit at the Kennedy Krieger Institute, wrote:
When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.
What the video is getting at, in our view, is the importance of distinguishing between different degrees of disability in setting policy for people with disabilities.
We think the failure to make those distinctions is what is in common among the movements to further deinstitutionalize and privatize services to the disabled, end guardianship, and close sheltered workshops, among other programs and services.
Those movements have had a major impact, causing policy makers and the media to overlook the needs and, in some cases, even the existence of people with the most severe levels of autism and other disabilities.
Attacks on guardianship
The failure to recognize different levels of disability is behind a growing movement to replace guardianship with Supported Decision Making (SDM). SDM is an arrangement in which individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, and living arrangements, and in other areas.
In typical fashion, SDM bills currently pending in the Massachusetts Legislature (H.272 and S.124) avoid the question whether everyone is really capable of making their own decisions in those very important areas. SDM proponents don’t appear to recognize that there are some individuals who do not have the cognitive skills necessary to make reasonable decisions. Those people need guardians – preferably guardians who are family members.
It should be clear from the video on severe autism behaviors that the children engaging in those self-injurious actions are not in a position, and may never be in a position, to be able to make their own life choices.
Yet one of those SDM- promoting groups – the Autistic Self-Advocacy Network – states on its website that:
People with disabilities usually get put under guardianship because other people think we can’t make choices. This is bad. People with disabilities want to keep the right to make our own choices.
Integrated employment
The ideology that everyone can function in mainstream society led to the closures of all remaining sheltered workshops in the state in 2016.
The charge was that the workshops limited the potential of the clients by keeping them out of the mainstream workforce. But the result has been that hundreds if not thousands of clients of the Department of Developmental Services (DDS) have been left in DDS day programs with little or nothing to replace the work opportunities they previously had.
For a potentially significant number of DDS clients, mainstream work settings have never been a viable option. Those persons aren’t able to function in those settings or don’t desire to do so.
It’s all about money and privatization
The ideological position that the community-based system of care is working perfectly for everyone fits with a decades-long push by successive administrations in Massachusetts and corporate providers for more privatization of the DDS system. According to the ideology, all persons with developmental disabilities can reach their full potential in the community system, unlimited by institutional constraints.
But as the video narrator notes, people with severe autism need “a continuum of care that includes intensive and specialized services that are usually provided in disability-specific educational, vocational, and residential settings.”
As the narrator says, parents of persons with severe autism are looking for a “seat at the table” when it comes to setting policy for caring for persons with developmental disabilities. They want policy makers to recognize that given the wide range in the severity of autism and other developmental disabilities, one-sized policies don’t fit all.
Our July newsletter is available onlne
The July 2021 issue of our newsletter, The COFAR Voice, is now available on our website, with articles reporting that:
- The Department of Developmental Services (DDS) has decided to finally lift family visitation restrictions in light of declining COVID rates in group homes and other residential facilities.
- New data show the number of DDS clients entering the mainstream workforce dropped after October 2019.
- The Legislature has upheld Governor Baker’s proposed cuts in funding for state-run DDS group homes, ICFs, and day programs; but COFAR made progress this past spring in getting Senate sponsors for budget amendments to restore that funding.
We also have an article about the retirement in June of Colleen M. Lutkevich, COFAR’s longtime, volunteer executive director. But not to worry — Colleen will continue to be available to do what she has done for 35 years — advocate on behalf of families and guardians of persons with intellectual and developmental disabilities.
Check out those articles and more in the new newsletter.
As usual, we welcome your thoughts about these issues, and your feedback in the comments section below.
Why we won’t be at the bill signing at Fenway Park
Tomorrow, Governor Patrick will be at Fenway Park for the ceremonial signing of three pieces of legislation that are intended to make major changes in the care and services for the developmentally disabled in Massachusetts.
Many advocates will be there, but many if not most of those in attendance will be corporate providers to the Department of Developmental Services, who played key lobbying roles in the drafting of each piece of legislation last spring. As a result, as we have pointed out, each of these new laws (because Patrick signed them for real in August) is flawed in a major way.
There really is no reason to celebrate unless and until changes are made in the laws, so we won’t be at the event tomorrow. In a nutshell, here are the problems with the laws:
1. National Background Check law: The law authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. It will ultimately require that both current and prospective caregivers in the DDS system submit their fingerprints to a federal database maintained by the FBI. Those requirements are long overdue, but they will be further delayed under the new law.
The fingerprint requirements will not be phased in under the law for all current employees in the system until January 2019, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained.
COFAR and the VOR, a national advocacy group for the developmentally disabled, sent a joint message to lawmakers this week that states: “Much harm can be done to vulnerable people due to the delayed implementation and the ambiguous language that we hope was not the intent of the Legislature.”
When COFAR contacted the Legislature’s Judiciary Committee last summer to ask why the committee had approved the delays and the ambiguous provision in the new law’s requirements, a staff member referred us to Johnston Associates, a Beacon Hill lobbying firm. A member of the firm said providers and some other advocates had pushed for the delays. No one could or would give us an answer as to why language was inserted that appears to allow the hiring of employees before their background checks are done.
2. The ‘Real Lives’ law: This legislation had been pushed for years on Beacon Hill by the providers. The stated intent of the measure is to introduce “person-centered planning” into the DDS care system by allowing each DDS client to “direct the decision-making process” and manage their own “individual budgets” for care.
In the wake of criticism earlier this year from COFAR, legislators removed a provision from the bill, which would have named the Association of Developmental Disabilities Providers and the Arc of Massachusetts to a board that would advise DDS in developing the person-centered planning system. Another provision that was thankfully removed would have established a “contingency fund” to compensate providers that lose funding when clients move out of their residential facilities.
But the new law still raises a number of concerns, including providing what appears to be only a limited role for guardians and family members in the person-centered planning process. The law also introduces a central role in the process for vaguely defined “financial management services” and other privately run entities.
In a joint statement this week, the VOR and COFAR called on legislators to “ensure that vulnerable individuals with intellectual and developmental disabilities have the support of legal guardians, when appointed, rather than financial managers or independent facilitators” in undertaking person-centered planning.
The joint statement also urged legislators to add a provision to the law ensuring that persons seeking DDS services would have an explicit choice among a range of care options and settings, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care. State-operated care is often not presented as an option to people seeking DDS residential services. Those persons are instead presented only with the option of corporate provider-operated residential care.
3. The DDS eligibility expansion law: This legislation is intended to fill a major gap in DDS care in Massachusetts by extending eligibility for services to people with autism and two other specified disabilities known as Prader-Willi Syndrome and Smith-Magenis Syndrome.
Until the enactment of this law, DDS had restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test. That left out many people with developmental disabilities, including autism, even though those conditions may severely restrict an individual’s ability to function successfully in society. If those people score higher than 70 on an IQ test, they are routinely denied services.
However, in specifying three developmental disabilities that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that often result in many of the same types of functional limitations, such as Williams Syndrome, spina bifida, and cerebral palsy. The new law was the product of closed-door negotiations among legislators, administration officials, and selected advocacy organizations.
In addition to changing that eligibility standard, the new law establishes a permanent new autism commission and authorizes the establishment of tax-free, individual savings accounts to pay for a variety of DDS and other services. The commission will consist of 35 members, including legislators, administration officials, the Arc of Massachusetts, and advocates from autism advocacy organizations. There are no seats on the commission for any advocates of state-run care for the developmentally disabled.
The VOR and COFAR urged legislators this week to make changes in the law “to better identify and serve eligible individuals in need of services and supports.”
In sum, while these new laws have many well-intentioned supporters, major changes are needed in each piece of legislation to enable it to fulfill its purpose and prevent it from doing more harm than good. It is not yet time for everyone to pat themselves on the back as will no doubt be happening tomorrow at Fenway Park.
New DDS eligibility law will leave many out in the cold
Like at least two other bills signed into law this month, a new law that will make adults with autism and certain other conditions eligible for services from the Department of Developmental Services was the subject of closed-door negotiations between key legislators, selected advocates, corporate providers, and the department during the past legislative session.
And like the new “Real Lives” and national background check laws, the resulting omnibus DDS eligibility law, while well-intentioned, raises a number of uncertainties and questions.
The problematic definition of “developmental disability”
The new law specifies that in addition to people with intellectual disabilities, people with autism and conditions known as Prader-Willi Syndrome and Smith-Magenis Syndrome will be eligible for DDS services. Until now, state law has restricted eligibility for DDS services to people with “intellectual disabilities,” as measured by a score of approximately 70 or below on an IQ test.
The existing eligibility standard has left out many people with developmental disabilities, including autism, even though those conditions may severely restrict an individual’s ability to function successfully in society. If those people score higher than 70 on an IQ test, they are routinely denied services.
In addition to changing that standard, the new law establishes a permanent new autism commission and authorizes the establishment of tax-free, individual savings accounts to pay for a variety of DDS and other services.
We have written before about the lack of services available to people with autism, Prader-Willi Syndrome, and other developmental disabilities. It’s unclear, however, how many additional people will be helped by the new law and how many will be left out, in part because of the way the law was drafted, and in part because it is unclear how many people with developmental disabilities currently go without services in Massachusetts. The administration does not maintain a publicly disclosed waiting list for services.
We are glad to see that the Legislature has recognized that having an intellectual disability is not necessary to establish that an individual has severe functional limitations and needs DDS services. The Disability Law Center (the DLC), a federally funded legal advocacy organization in Massachusetts, maintains that Massachusetts is the only state in the nation that has had such a narrow standard for eligibility for services.
But in specifying three additional conditions that make individuals eligible for DDS services, the new law necessarily leaves out other conditions that can and often do result in many of the same types of functional limitations, such as Williams Syndrome, spina bifida, and cerebral palsy. We raised concerns about that aspect of the legislation earlier this year, noting that the selection of the specific conditions listed in the legislation was not subject to a public hearing before the Children, Families and Persons with Disabilities Committee, but was the result of closed-door negotiations.
A post currently on the The Massachusetts Association of Developmental Disabilities Providers (ADDP) website homepage states that the ADDP’s affiliated organization, the Arc of Massachusetts, played a key role in those final negotiations over the DDS eligibility law and the two other new laws as well — the national background check and Real Lives laws.
COFAR and the DLC supported a previous definition of developmental disability in the DDS eligibility legislation, which did not specify a limited number of conditions, such as autism or Prader-Willi Syndrome. The previous definition stated only that a developmental disability involves “substantial functional limitations” in three or more “major life activities,” which include such things as self-care, “receptive and expressive language,” learning, mobility, the capacity for independent living, and economic self-sufficiency.
We have noted that specifying certain conditions as eligible for state services and leaving out others may violate both the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability. Withholding support for this restricted definition, in addition to COFAR, is the DLC. As one advocate noted, the addition of three specified conditions for DDS eligibility to the existing requirement of intellectual disability “does very little to move us out of the bottom tier of all states” in the narrowness of the state’s eligibility criteria for services.
The lack of a state-care option
Another potential problem with the new law has to do with the makeup of the permanent autism commission. The commission specified in the law will consist of 35 members, including legislators, administration officials, the Arc of Massachusetts, and advocates from autism advocacy organizations. There are no seats on the commission for any advocates of state-run care for the developmentally disabled.
We think this is an unfortunate oversight in the makeup of the commission because we believe that state-run group homes and other facilities will be needed to accommodate the influx of new people who will become eligible for care under the new law. As we have pointed out, the administration has been underfunding and even dismantling state-run care options for people with intellectual disabilities, and designating provider-run settings as their only option in most cases.
With potentially thousands of people added to the DDS eligibility lists as a result of the new law, a large percentage of that population will still not be able to get residential care or services due to a lack of DDS resources for community-based care. If DDS continues to close state-operated group homes as it has been doing, this is only going to continue to make the situation worse.
State-run residential care is provided in Massachusetts by staff with better pay and training than is usually available in provider-run facilities. As a result, we think an advocate of state-run facilities on the autism commission would introduce a needed point of view in the commission’s deliberations.
We did support the addition to the autism commission of a member with clinical knowledge of Smith-Magenis Syndrome. Amendments to the legislation, which added that member to the commission and added Smith-Magenis Syndrome (SMS) to the conditions listed in the law, were filed on behalf of the Duzan family, whose daughter, Sara, has SMS. The amendments were adopted.
As we have reported, Sara Duzan has been subjected for many years to poor conditions and treatment in provider-run residential facilities, according to her family. Part of the problem in her care has been that few providers are knowledgeable about SMS, which is often characterized by behavioral outbursts. As a result of that lack of knowledge, Sara has often been subjected in residential facilities to the inappropriate use of restraints. In addition, members of the Duzan family themselves have often been inappropriately and unfairly blamed by providers, probate court judges, and even clinicians and state administrators, in our view, for causing Sara’s outbursts.
Other issues
Another area of uncertainty in the new DDS eligibility law concerns its authorization of so-called ABLE accounts, which allow families of developmentally disabled people to establish tax-free savings accounts for expenses including education, housing, and supports and services. It is unclear what relationship these accounts might have to “individual budgets” established under the newly signed Real Lives law. We have expressed concern that those individual budgets do not appear to fall under the control of guardians of disabled clients.
Like the Real Lives law, which provides for the involvement of private financial managers in administering clients’ individual budgets, the new DDS eligibility law provides for the authorization of private entities to manage individual ABLE accounts.
As is the case with the national background check and Real Lives laws, we hope that the Legislature addresses the problems we have identified in the DDS eligibility law in its upcoming session.
New DDS background check law has delayed requirements
A new national criminal background check law in Massachusetts may well have a major, positive impact on services and care for people with developmental disabilities in the state.
But under the law, the background check requirement is delayed for many, if not most, current employees in the Department of Developmental Services system for more than four years, until January 2019. The requirement is delayed for a year and a half for prospective employees in the system.
The long-awaited law, which was signed by Governor Patrick last week, authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. The law will ultimately require that both current and prospective caregivers in the system submit their fingerprints to a federal database maintained by the FBI. The law applies to DDS employees, employees of corporate service providers to the department, and caregivers over the age of 15 of persons living at home.
Up to now, persons hired to care for clients in the DDS system have had to submit only to an in-state criminal background check, which identifies only criminal arrests and convictions in Massachusetts, and does not identify any convictions a job applicant might have from another state. A national background check system will fill in that potential gap in the applicant’s history.
The new law’s fingerprint requirements, however, will be phased in through January 2019 for current employees, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained. That provision states the following:
Department-licensed, funded or approved programs and providers of transportation services on behalf of any department-licensed, funded or approved program may hire individuals without first obtaining the results of a state and national fingerprint-based criminal history check (my emphasis).
It’s not entirely clear to us what the intent of this provision is or what its impact might be. It appears to allow people to be hired before they are cleared through the FBI database. The provision does not specify a time frame for obtaining the background check results after an individual is hired.
Does this provision mean that even after January 2019, someone could be hired by DDS or a provider and could work for weeks or possibly months with developmentally disabled people before their background results are obtained or before their backgrounds are even checked? Furthermore, does the provision allow for that leeway even for in-state background checks?
I contacted the staff of the Legislature’s Judiciary Committee earlier this week to ask about that provision and the provisions phasing in the background check requirements until 2016 and 2019. It was apparently in the Judiciary Committee that these provisions were inserted. Interestingly, the Judiciary Committee staff person I talked to referred me to Philip Johnston Associates, a Beacon Hill lobbying firm, which was apparently involved in the final negotiations over the bill, apparently on behalf of DDS corporate providers.
On Tuesday, I spoke to a member of the Johnston Associates firm, who said she was unsure as well about the intent of the provision that appears to allow the hiring of individuals prior to checking their backgrounds, and that she would get back to me. I have not yet heard back from her. I also placed two calls on Monday and Tuesday to the state Department of Criminal Justice Information Services, which is in charge of administering the law. I have yet to get a return call from that department.
The Johnston Associates staff member said the providers and other advocates involved in negotiations over the background check legislation pushed for phasing in the fingerprint requirements due to concerns over the time needed to implement them. A member of the Association of Developmental Disabilities Providers expressed a concern in a news article last week that the new fingerprint requirements could prove burdensome to smaller provider agencies.
It is not clear to us though that more than four years is really needed to phase in the national background check program for current employees in the DDS system, or that a year-and-a-half delay is needed before requiring new employees to be fingerprinted. We’re skeptical that that much time is needed, partly because we’ve witnessed a lack of urgency on the part of both the Legislature and the administration for the past several years in just getting this law passed. It seems possible that that lack of urgency is being carried over into implementing the law’s requirements.
National background check legislation had been proposed each year for up to a decade by then Representative Martin Walsh, now mayor of Boston, before it was finally enacted this year. Each year, the legislation would get stuck in either the Judiciary or House Ways and Means Committees, or both, and then would die at the end of the session. The administration did little during that time to lobby for passage of the measure. As a result, Massachusetts has been only one of a handful of states without a national background check program for people with developmental disabilities.
Meanwhile, the federal government has stood ready to assist the state with grant money under the Affordable Care Act to help implement the new background check law; but Massachusetts has declined to apply for that federal money, which has available since 2010. The state has even been slow to implement national background checks for school teachers and children’s day care providers.
While we’re glad to see that the DDS national background check bill is finally law, we hope the administration now shows a true commitment and sense of urgency in getting it to work.
Autism definition and commission bill raises some concerns
Process does matter, and we have a number of concerns about what happened to the process in the surprise adoption by the state House of Representatives last week of a major piece of legislation affecting people with autism in Massachusetts.
The bill (H. 4047), which was passed by the House on April 16, ties together a number of separate pieces of legislation, including a bill that would expand eligibility for state services both to persons with autism and a condition called Prader-Willi Syndrome. The combined bill also includes language from a separate bill that would establish a permanent state autism commission in Massachusetts (H. 3777).
We acknowledge the good intentions of the leadership in the House in trying to extend state services potentially to thousands of people with autism who currently do not qualify for care from the Department of Developmental Services because they don’t meet the Department’s definition of intellectual disability. We also have no objection to the establishment of a permanent autism commission.
But the omnibus bill, as it is being referred to, raises a number of concerns:
1. H. 4047 adopts a restricted definition of developmental disability that, as we have previously noted, leaves out people with many types of disabilities other than autism and Prader-Willi Syndrome, which is a condition often associated with autism. That restricted definition was a compromise, negotiated between DDS and a small group of legislators and advocates. It has not had a public hearing and may violate both the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability. Among the organizations withholding support for this restricted definition, in addition to COFAR, is the Disability Law Center.
2. The bill as a whole does not appear to have been considered by the Children, Families, and Persons with Disabilities Committee, which is the main committee of cognizance in the Legislature over DDS-related issues.
3. The original legislation establishing the autism commission (H. 3777), which was incorporated into H. 4047, does not appear to have been considered by the Children, Families and Persons with Disabilities Committee either. That previous bill appears to have gone from the State Administration Committee to the House Ways and Means Committee before being incorporated into H. 4047, without ever coming before the Children and Families Committee.
Our main concern about H. 4047 is that, as currently written, it would appear to violate the federal Rehabilitation Act (29 U.S.C., Section 794) and Article 114 of the Massachusetts Constitution. The bill specifies DDS services for certain developmental disabilities but not others, such as cerebral palsy, epilepsy, spina bifida, and traumatic brain injury, and cognitive impairments such as Williams Syndrome. This, on its face, would appear to be discriminatory and could potentially invite lawsuits.
H. 4047 defines “developmental disability” as a “severe, chronic disability of an individual 5 years of age or older that is attributable to mental or physical impairments resulting from intellectual disability, autism or Prader-Willi Syndrome.” Prader-Willi Syndrome is a condition often associated with autism.
State law currently restricts eligibility for services from DDS to persons having an “intellectual disability” as measured by an IQ score of approximately 70 or below. Intellectual disabilities are considered a subset of developmental disabilities.
Currently, thousands of people in the state are developmentally disabled in that they are unable to care for themselves or otherwise function adequately in society; yet, many of them are ineligible for services from the state because they do not have an intellectual disability. However, even though it excludes thousands of people from DDS eligibility, the current eligibility standard is, in itself, not necessarily a violation of the Rehabilitation Act or the state Constitution. That’s because it is based on an IQ threshold above which an individual is not considered by DDS to be intellectually disabled.
Ironically, in expanding the DDS eligibility statute to include people with autism and Prader-Willi Syndrome, the state may be opening itself up to a lawsuit because the distinction between disabled and non-disabled will no longer be based on a clear standard of measurement but rather on what appears to be an arbitrary list of developmental conditions. If you happen to have the right condition, i.e., autism or Prader-Willi Syndrome, you will get DDS services; but if you happen to have cerebral palsy or Williams Syndrome, you won’t get them.
Under a previous eligibility expansion bill that both COFAR and the DLC supported, developmental disability was defined as a condition “attributable to a mental or physical impairment,” which results in “substantial functional limitations” in three or more “major life activities.” Those activities included self-care, receptive and expressive language, learning, mobility, self-direction, a capacity for independent living, and economic self-sufficiency. Like the current DDS eligibility standard, that previous definition of developmental disability attempted to distinguish between disabled and non-disabled persons. It did not arbitrarily select some disabilities for inclusion and exclude others.
We understand the DDS’s concern that if eligibility for services is opened up to all persons with developmental disabilities, the state may be unable to afford the resulting costs of care. But adopting a seemingly arbitrary list of those who will be eligible and those who will therefore be excluded doesn’t seem to us to be the right solution.
Other states have found acceptable solutions to this problem, and we think Massachusetts should seek to join them. In the meantime, we hope the Senate will send H. 4047 back to the Children and Families Committee, which can at least subject all of the provisions in the proposed legislation to a public hearing.
Compromise bill expands DDS eligibility to some, but not all people with developmental disabilities
After months of negotiations with a limited group of advocates for the developmentally disabled, key state legislators have approved a draft of a bill intended to expand services to people who are not currently eligible for help from the Department of Developmental Services.
The bill (H. 3715) would expand eligibility for residential and other services to people with what is now referred to as Autism Spectrum Disorder, although the legislation uses the older term “autism” to describe the group. The bill also specifically mentions Prader-Willi Syndrome – a disability often associated with autism.
While a step forward, the compromise bill appears to leave out a number of other disabilities that are eligible for similar services in many other states, such as cerebral palsy, epilepsy, spina bifida, and traumatic brain injury, and cognitive impairments such as Williams Syndrome.
We understand top Patrick administration officials were concerned about the price tag in including a large list of developmental disabilities in the bill. State law currently restricts eligibility for services from DDS to persons having an “intellectual disability” as measured by an IQ score of approximately 70 or below. Intellectual disabilities are considered a subset of developmental disabilities.
Currently, thousands of people in the state are developmentally disabled in that they are unable to care for themselves or otherwise function adequately in society; yet, they are ineligible for services from the state because they do not have an intellectual disability.
The new bill, which appears to have been hastily drafted, would extend DDS services to people with developmental disabilities, but would restrict the definition of a developmental disability to “a severe, chronic disability of an individual 5 years of age or older that is attributable to a mental or physical impairment’s (sic) resulting from intellectual disability, Autism or Prader-Eilli (the spelling should be Prader-Willi) Syndrome.” The bill was approved on October 21 by the Children, Families, and Persons with Disabilities Committee and sent to the Health Care Financing Committee.
Colleen Lutkevich, COFAR Executive Director, cited, as an example of someone who would fall through the cracks of the new legislation, a person with normal intelligence but with a severe level of cerebral palsy that precludes him or her from being able to feed or toilet himself or herself. Under the compromise bill, that person would not be considered developmentally disabled and therefore would still not qualify for services. “Services are needed at all levels for people with all types of disabilities,” Lutkevich said.
A previous draft of the bill had not specified any developmental disabilities in expanding DDS eligibility, but had defined developmental disability as a condition “attributable to a mental or physical impairment,” which results in “substantial functional limitations” in three or more “major life activities.” Those activities included self-care, receptive and expressive language, learning, mobility, self-direction, a capacity for independent living, and economic self-sufficiency.
That previous draft would have included people with disabilities such as cerebral palsy if those disabilities were severe enough to cause substantial functional limitations in three or more major life activities. As such, the previous draft would have “focused pragmatically on the challenges faced by the individual and their family, and avoided leaving people to fall between the cracks,” as one advocate described it.
We are hopeful that the Legislature and the administration will find a way to include in this bill all those who are in need of DDS services. Many other states have figured out ways to avoid leaving vulnerable people behind, and Massachusetts should be among those innovative states.
Thousands falling through the cracks in the DDS system
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.
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.
COFAR blog 