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ASPartOfMe
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14 Mar 2024, 9:25 am

NBC News

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As autism diagnoses have soared in the U.S. in recent years, an army of businesses have sprung up to serve the children who have received them.

Many of the companies swarming the autism services industry are backed by private-equity firms. These entities use borrowed money to buy companies they hope to sell quickly for more than they paid. The industry has taken over a vast array of health care businesses in recent years, even as research has shown that patient care declines at some entities run by private-equity firms. A recent study by academics at Harvard University and the University of Chicago, for example, found that patients at hospitals owned by private-equity firms experienced far more infections and falls. And on March 5, the Federal Trade Commission and Department of Health and Human Services announced an inquiry into private equity and other corporate takeovers of healthcare entities to understand how the transactions might “increase consolidation and generate profits for firms while threatening patients’ health, workers’ safety, quality of care, and affordable health care for patients and taxpayers.”

Among buyouts of autism services companies from 2017 to 2022, 85% were done by private-equity firms, according to Rosemary Batt, a professor at Cornell University’s School of Industrial and Labor Relations. With Eileen Appelbaum, co-director of the Center for Economic and Policy Research, Batt co-wrote a study: “Pocketing Money for Special Needs Kids: Private Equity in Autism Services.” The research estimates that some 135 private-equity firms invested in for-profit companies providing ABA therapy. Because these companies are private, it is difficult to determine the total market share the firms control in autism services, but the top 12 private-equity-backed companies employed 30,000 people and controlled almost 1,300 locations nationwide, Batt and Appelbaum found.

The autism services industry generates revenues of $7 billion a year, and Applied Behavior Analysis, the therapy J.J. received at CARD, is the most popular service offered. Typically requiring intensive and costly therapy sessions of up to 40 hours a week, it is covered by private health insurance and Medicaid in all 50 states. A year of ABA treatment can cost up to $60,000 per child, according to the CDC.

The pandemic savaged many health care operations, to be sure, but the increased debt that private-equity firms typically load onto the companies they buy raised the companies' costs, making Covid’s hit even more of a challenge.

'Clinics run by businesspeople'
Applied Behavior Analysis grew out of research published in 1987 by Ivar Lovaas, a UCLA psychologist. In a study, Lovaas found that nine of 19 children receiving ABA intervention for up to 40 hours a week for two years or more made substantial progress in 10 intellectual and language skills. Subsequent research by others presented similar findings and the industry took off.

Twenty years later, as autism diagnoses were rising nationwide, parents began pushing for ABA therapy and other services to be covered by Medicaid and private insurance. South Carolina and Texas were among the first to mandate coverage in 2007; by 2019, all 50 states were aboard. In 2014, the Centers for Medicare and Medicaid stated that Medicaid must cover medically necessary services for autism.

Although there are several treatments for autism related disorders, including speech and occupational therapy, ABA has become the default recommendation made by many pediatricians when autism is diagnosed, experts in the field say. Some other therapies are not covered by insurance in all states — one reason why private-equity firms have focused their buyouts on ABA therapy companies, Batt and Appelbaum say.

Facilities offering ABA services are typically overseen by a board-certified behavior analyst who assesses each child’s needs and develops individual treatment plans. Once enrolled in a program, a child attends therapy sessions conducted by a registered behavior technician based on those needs. While board-certified behavior analysts receive a graduate level certification, registered behavior technicians need only attain a high school diploma, go through a background check and complete 40 hours of training. They are not licensed by the states in which they operate.

Employment in the field has exploded. According to the Behavior Analyst Certification Board, there are 66,339 board-certified behavior analysts in the U.S., up from 16,376 in 2014. The number of registered behavior technicians has also rocketed, up from 328 a decade ago to more than 160,000 today.

Some researchers question ABA therapy’s effectiveness. In 2020, a report from the Department of Defense, which paid $370 million to cover therapy costs for service-members’ children in 2019, found “limited evidence” of better outcomes using ABA therapy.

Private equity’s sizable investments in ABA therapy extend well beyond Blackstone’s purchase of CARD, and these investments across the industry trouble experts in the field. One is Pablo Juarez, a senior associate in pediatrics, psychiatry and behavioral sciences, and special education at the Vanderbilt University Medical Center. He said that behavior analysts tell him parents of autistic children are pushed into paying for 30 to 40 hours of treatment each week because it generates more profits to the clinics. As co-director of TRIAD, the Treatment and Research Institute for Autism Spectrum Disorders at Vanderbilt, Juarez said he sees this practice more among private-equity-backed clinics.

“These clinics are run by businesspeople, and scheduling patients for smaller periods of time is more labor intensive and diminishes profits,” Juarez said. “I have heard from some behavior analysts that although they may suggest 10, 15, 20 hours a week after the assessment of a new child at a clinic, they come back from meeting with clinic managers and say the child is getting 40 hours.”

'Fast Food ABA'
For the past decade, Bailey of the University of South Florida has run an ABA Ethics hotline, giving him a bird’s-eye view, he said, of problems in the growing industry. Hotline complaints about private-equity-backed companies have been numerous and persistent, Bailey said.

“The original idea was to answer questions, but it quickly moved to complaints about ethics at the company the person worked for,” he said. “People would say, ‘They’ve increased my case load, it’s almost double what it was when I was hired on.’ In order to make more money, the private equity-owned company ups the number of cases, decreases the amount of supervision, and the next thing you know, this is not about treatment, it’s about how many hours we can get.”

Michelle Zeman, a board-certified behavior analyst who is autistic, agrees. “These are financial people who don’t understand the needs of our clients,” she said. “They’re not about helping out the community.”

After private-equity buyouts of ABA centers, staffing, training and supervision at clinics decline, undermining the quality of care, the researchers Batt and Appelbaum found. As a result, they suggest that states implement new minimum client-staff ratios at clinics and increase oversight of the industry.

Other independent research shows a decline in care after private-equity firms buy up health care entities. For example, academic research on nursing homes from 2021 showed 10% higher mortality rates at facilities owned by private-equity firms.

Even though the private-equity experiment with ABA therapy has hit roadblocks, the financial firms continue to target providers for acquisition. Zachary Stevens, a board-certified behavior analyst and the clinical director of Practical Behavior Analysis in Nashville, Tennessee, says that in the recent past he received phone calls and emails every week from private-equity-backed companies hoping to buy his operation. The calls have slowed down a bit, but they still come, and he said he always says no and tries to explain why.

“I tell them: ‘You are asking people who care about other people to conform to a model of therapy that is exploitive of an autism diagnosis,’” he said. “Saying your child needs 30 hours a week of therapy stands on pretty weak ground, but they have taken that and made that the rule of the land for their clinics. They’re creating fast food ABA.”

Elemy is an in-home ABA provider backed by several venture capital firms. Last year, the company pulled out of most of the states it operated in because the centers there were not profitable, laying off staff and abandoning customers. Zeman, the board-certified behavior analyst, said she worked briefly at Elemy and provided NBC News with texts about the downsizing sent to Elemy staff by its founder, Yury Yakubchyk, in 2022.


At the time of this TEDx talk Chloe Everett was a psychology major


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autisticelders
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15 Mar 2024, 7:26 am

thank you, my spouse and I were just talking about this! I forwarded the links on to him.


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ASPartOfMe
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15 Mar 2024, 8:03 am

autisticelders wrote:
thank you, my spouse and I were just talking about this! I forwarded the links on to him.

You are welcome.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


MatchboxVagabond
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20 Mar 2024, 10:27 pm

If this is like anything else that private equity touches, this will quickly become unaffordable to virtually everybody, effectively killing it.



CockneyRebel
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22 Mar 2024, 10:01 pm

I'm glad that I didn't have to go through many hours of that glorified child abuse every week. I was still expected to mask, though. Why is it that when a child masks, parents see it as progress? Maybe their autistic child is masking, because they're scared.


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traven
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23 Mar 2024, 1:44 am

they'll take over everything, from daycare to retirement homes

not unlike the drive for cheap-stuff stores, they?(hedgefunds driven?)
have close down totally fine shops and factories
to put in place cheap plastics that must travel around the world, but ain't even worth the price of travel
- the garbage mafia??? :roll: :roll: The Reason The Mob And The Garbage Industry Are So Connected




MatchboxVagabond
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06 Apr 2024, 5:14 pm

CockneyRebel wrote:
I'm glad that I didn't have to go through many hours of that glorified child abuse every week. I was still expected to mask, though. Why is it that when a child masks, parents see it as progress? Maybe their autistic child is masking, because they're scared.

Because NT parents see it as becoming NT and undiagnosed ND parents think that it meant avoiding the issues.



elotepreparado
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15 Apr 2024, 6:06 pm

MatchboxVagabond wrote:
CockneyRebel wrote:
I'm glad that I didn't have to go through many hours of that glorified child abuse every week. I was still expected to mask, though. Why is it that when a child masks, parents see it as progress? Maybe their autistic child is masking, because they're scared.

Because NT parents see it as becoming NT and undiagnosed ND parents think that it meant avoiding the issues.


But also masking more as NT can make a lot of things easier to in life. Not exactly easier to function. It sometimes makes it harder to function. But it can help avoid bullying and make it easier to be accepted by others. It's just the way things are. People consciously or subconsciously treat people different when they look different.