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Father writes about how he and his son finally broke free of the grip of Applied Behavior Analysis

November 25, 2022 2 comments

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.

Baker administration does not appear to have projected the impact of higher state funding on direct-care wages

November 7, 2022 Leave a comment

(COFAR Intern Joseph Sziabowski contributed to the research for this post.)

On July 28, Governor Baker signed the Fiscal Year 2023 state budget, which, among other things, directed for the first time that hundreds of millions of dollars be spent to raise the wages of direct-care staff working for corporate human services providers.

But more than a quarter of the way through the fiscal year, questions remain about the legislation, including the amount by which those wages will be raised.

The budget provision appears to be a big win for thousands of caregivers in the Department of Developmental Services (DDS) system, whose low wages have resulted in staffing shortages that have reached critical levels. Up to that point, the administration and Legislature appeared to have done little to address the staffing crisis.

However, neither DDS nor the Executive Office of Health and Human Services (EOHHS) appear to have projected the level to which the average direct-care wage in Massachusetts will increase due to the budget legislation.

The legislation (line item 1599-6903 of Chapter 126 of the Acts of 2022), specifically requires that any corporate human services provider receiving state funding under a special provider reserve account direct at least 75% of that funding to compensation for direct-care and front-line staff.

The legislation appropriated $230 million for the provider reserve account for Fiscal 2023. The 75% funding provision would appear to require that a total of $173 million in the reserve account be directed by human services providers to boost direct-care wages.

The legislation, however, did not set a target wage for direct-care workers that providers would be expected to pay under the line item funding requirement. The budget line item, in fact, implies that the Legislature does not currently know what the wage distribution is for direct-care workers in Massachusetts.

In our view, it is problematic that despite appropriating hundreds of millions of dollars in funding to the providers, neither the administration nor the Legislature appear to have set a goal as far as wages of the providers’ direct-care workers are concerned.

COFAR has called for a target minimum wage of $25 per hour for those workers. The U.S. Bureau of Labor Statistics (BLS)  lists an average direct care wage of $16.80 throughout the country as of May 2021. (The BLS wage category is Social and Human Services Assistants in Residential Intellectual and Developmental Disabilities facilities.)

There is a difference of more than $8 per hour, or nearly 50%, between the average direct care wage in the nation and what COFAR has proposed for workers in Massachusetts. But whether our goal or something considerably less might be achieved by the budget legislation is apparently unknown.

It also isn’t clear that the increased funding will actually find its way to the direct-care workers and will not be diverted to the provider executives. In our October 12 email query to both EOHHS Secretary Marylou Sudders and DDS Commissioner Jane Ryder, we also asked if the administration had issued any guidance to providers regarding the payment of higher direct-care wages, and how the money would be audited and tracked. As noted, we have not received any answers to those questions.

Legislative staffer assumes there is no wage projection

In response to the questions above, which we also posed to the Legislature’s Children, Families, and Persons with Disabilities Committee, a committee staff member said she had been informed by EOHHS that the administration has “set benchmarks from which providers choose to pay their direct-care workers – so pay rate decisions on exceeding those rates are still up to providers for the privatized group homes.” The benchmarks appear to be the BLS average wages noted above.

The legislative staffer added that, “I take this to mean they (the administration) don’t have projections for a raise in wages, whether they will exceed the benchmark rates or not. They will at least have to be at the benchmark rates.”

In other words, the administration appears to be concerned only that current and future rates paid by providers to their direct-care workers in Massachusetts be comparable to the national average rates calculated by the BLS.

Legislature does not know direct-care wage distribution

The Legislature, in fact, does not appear to know what the current wage distribution is for direct-care workers in the state’s human services system.

The Fiscal 2023 budget line item states that EOHHS to provide the Ways and Means committees as of March 3 of next year with a comparison of the median wages earned by direct-care and other workers in Massachusetts with the 75th percentile wage estimate by the BLS.

What that seems to mean is that the Legislature would like to know whether direct-care workers in Massachusetts are in the upper quarter of the BLS wage range in the country. That still would not require EOHHS to project the likely impact of the requirement in the Fiscal 2023 budget that the providers spend 75% of their reserve fund revenues on raising those wages in Massachusetts.

Baker takes credit for increased funding to providers

On October 3, Governor Baker “touted” increases in funding his administration has provided to the corporate human services providers  — more than $800 million since 2015, according to The State House News Service. But in his remarks to the Massachusetts Providers’ Council, Baker apparently didn’t address the potential impact of the increases on direct-care wages.

In the same article, the News Service noted that, “The human services sector has struggled for years to attract and retain workers due to the combination of lackluster pay and the difficult nature of the work.”

The article didn’t question why a nearly billion-dollar increase in provider rates would not substantially raise the “lackluster pay” to the providers’ workers.

As we reported in August, much of that money appears to have gone to the providers’ executives. Between Fiscal Years 2012 and 2020, total compensation of CEOs, executive directors, and other DDS provider executives doing business in Massachusetts rose from $102.4 million to $125.5 million. That was a 23% increase.

Also, the average compensation paid per executive rose in that period from approximately $161,000 to $184,000 — a 14% increase.

As we have previously reported, both the state auditor and inspector general have found that increased state funding to the providers hasn’t necessarily translated into higher direct-care wages.

We are hopeful that this year will mark a meaningful increase in direct-care worker pay. But thus far, there has been no information as to what the actual impact of the increased funding will be on those wages.

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