Report on Private Equity

The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.   After its purchase by Blackstone, the Center for Autism and Related Disorders went bankrupt.

Private Equity Stakeholder Project, "Private Equity in Intellectual and Developmental Disability Services."  Executive Summary:

Private equity firms have been acquiring companies providing services for people with intellectual or development disabilities (IDD). This includes residential facilities, home health and personal care, supported and independent living services, and others. These services were historically provided primarily by non-profits and religious organizations. Through recent buyouts and consolidation, several large private equity owned companies have emerged with tens of thousands of employees at numerous locations across the United States. In some cases, these companies have achieved regional market concentration obscured by complex ownership structures and disparate branding. Case studies in this report illustrate the risks that the private equity business model poses to IDD providers and the people they serve, including:

• Sevita (Centerbridge Partners, Vistria Group)
• Help at Home (Centerbridge Partners, Vistria Group) \
• Broadstep Behavioral Health (Bain Capital)
• Texas Medicaid HCBS provider landscape 
• Advoserv/Bellwether Behavioral Health (GI Partners, Wellspring Capital)

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 PE Cost-Cutting Tactics & Impacts 

• Reducing staffing 
• Failing to provide adequate training 
• Underpaying employees, resulting in high-turnover and understaffing 
• Failing to hire employees with adequate licensing (which can be more costly) 
• Cutting services (e.g., therapy or educational services) 
• Failing to maintain facilities, leading to unsafe or unsanitary living conditions

Optum v. ABA Coverage

The Politics of Autism includes an extensive discussion of insurance and Medicaid services.

A consistent theme in autism policy is very simple:  pay now, or pay later. 

Annie Waldman at Pro Publica:

ProPublica has obtained what is effectively the company’s strategic playbook, developed by Optum, the division that manages mental health benefits for United. In internal reports, the company acknowledges that the therapy, called applied behavior analysis, is the “evidence-based gold standard treatment for those with medically necessary needs.” But the company’s costs have climbed as the number of children diagnosed with autism has ballooned; experts say greater awareness and improved screening have contributed to a fourfold increase in the past two decades — from 1 in 150 to 1 in 36.

So Optum is “pursuing market-specific action plans” to limit children’s access to the treatment, the reports said.

“Key opportunities” are outlined in bullets in the documents. While acknowledging some areas have “very long waitlists” for the therapy, the company said it aims to “prevent new providers from joining the network” and “terminate” existing ones, including “cost outliers.” If an insurer drops a provider from its network, patients may have to find a new clinician that accepts their insurance or pay up to tens of thousands of dollars a year out of pocket for the therapy. The company has calculated that, in some states, this reduction could impact more than two-fifths of its ABA therapy provider groups in network and up to 19% of its patients in therapy.

The strategy targets kids covered through the company’s state-contracted Medicaid plans, funded by the government for the nation’s poorest and most vulnerable patients. To manage Medicaid benefits, states often pay private insurers a fixed amount of funds per patient, regardless of the frequency or intensity of services used. When companies spend less than the allotted payment, they are typically allowed to keep some or all of what remains, which federal investigators and experts acknowledge may be incentivizing insurers to limit care.

United administers Medicaid plans or benefits in about two dozen states and for more than 6 million people, including nearly 10,000 children with autism spectrum disorder. Optum expects to spend about $290 million for ABA therapy within its Medicaid plans this year, and it anticipates the need increasing, documents show. The number of its Medicaid patients accessing the specialized therapy has increased by about 20% over the past year, with expenses rising about $75 million year-on-year.

ABA Controversies

 In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

Jessie Van Berkel reports on ABA at the Minneapolis Star-Tribune:

In recent years, some autistic adults in the United States and around the world who experienced the practice as children have described it as traumatic and said they should not be forced to behave like their neurotypical peers. And a U.S. Department of Defense study published in 2020 examined outcomes for children with autism who received ABA therapy and raised concerns that children were not seeing significant improvement.

There is also national scrutiny of billing practices in the field. The U.S. Department of Health and Human Services Office of Inspector General has been auditing Medicaid claims for ABA for children diagnosed with autism. The office’s website says, “In the past few years, some Federal and State agencies have identified questionable billing patterns by some ABA providers as well as Federal and State payments to providers for unallowable services.”

A spokesperson said a report is expected later this fall and declined to comment on which states are being reviewed.

Hundreds of millions in Medicaid dollars have gone to autism service providers through Minnesota’s early intervention benefit since 2018. Some of the biggest providers, which offer ABA, have received tens of millions of dollars.

ABA remains the “gold standard, or the best interventions we have right now,” said Jessica Simacek with the Institute on Community Integration at the University of Minnesota. The American Academy of Pediatrics states most evidence-based treatment models for children with autism are based on the principles of ABA.

The challenge is trying to affirm neurodiversity while addressing situations where a child exhibits dangerous behaviors, like running away, self-injury or aggression, Simacek said. She doesn’t want parents to be afraid to come forward and say, “Though I celebrate my child, these are areas we need help with.”

Autism Therapy in the US and Israel

In The Politics of Autism, I note that we need more study of how autistic people fare in other countries.

Arkady Bukh at The Times of Israel

In the U.S., ABA therapy is heavily supported by both the government and insurance companies. Many states require insurance to cover ABA, making it more accessible for families. This support has helped the ABA market grow significantly, with projections indicating it could reach $4 billion by 2032.

In Israel, ABA therapy is also widely used for treating autism and is incorporated into public and private healthcare systems, schools, and specialized centers. Attitudes towards ABA therapy in Israel are varied. Many parents and professionals appreciate ABA for its structured methods and positive outcomes. However, similar to the U.S., the autistic community and some professionals are growing critical of ABA’s ethics and intense behavior modification focus. The Israeli government and health insurance providers strongly support ABA therapy.

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Parents and professionals in both countries value ABA’s structured, evidence-based approach. Both have integrated ABA into their healthcare and educational systems.

Nevertheless, cultural differences greatly influence the implementation and perception of ABA therapy, which in turn shape societal attitudes towards it. The focus on individualism in the USA aligns with ABA’s goals of increasing independence and specific skills. American parents and professionals often prioritize interventions that help children gain autonomy, explaining ABA’s wide acceptance.

Conversely, Israel’s collectivist culture promotes a holistic view of therapy, considering the family unit and community alongside individual progress. Israeli families and professionals emphasize communal well-being and cohesion, adapting interventions to include family dynamics and collective goals.

Early Intervention: More Is Not Necessarily Better

 In The Politics of Autism, I discuss evaluation, diagnosis, and early intervention.

A release from the UNC School of Medicine:

When a child is diagnosed with autism, health care professionals often recommend intensive interventions, which can amount to 20-40 hours per week, to support their development.

However, a new study led by Micheal Sandbank, Ph.D., assistant professor in the Department of Health Sciences at the UNC School of Medicine, and other researchers across the United States has found that more does not necessarily mean better.

Using data from 144 early childhood intervention studies, which involved 9,038 children between the ages of 0 and 8, researchers conducted a meta-analysis to determine whether higher intensity interventions provided increased benefits for young autistic children compared to less intensive interventions. They found that intervention outcomes did not improve as intervention intensity increased. Their results were published in JAMA Pediatrics.

"We concluded that there was not rigorous evidence supporting the notion that increasing the amount of intervention produces better intervention outcomes," said Sandbank, who was first author on the study. "Instead, we recommend that practitioners consider what amount of intervention would be developmentally appropriate for the child and supportive to the family."

The most commonly recommended approach for autistic children in the United States is called Early Intensive Behavioral Intervention, or EIBI. The current clinical guidelines regarding intensive intervention arose from a 1987 study, which found that autistic children who received 40 hours of behavioral intervention per week had more cognitive improvement than those who received only 10 hours per week. But many subsequent studies about behavioral intervention methods have provided mixed results and are lacking in quality. Of note, many studies have confused intervention amount with intervention approach, provided null results, or required retractions.

In November 2023, Sandbank found that many low-quality studies are dominating the field and that few studies have adequately examined whether interventions can have adverse effects or harms. Notably, interventions requiring young children to be away from home for long durations of time can deprive them of critical rest, socialization with family members, and more.

"In order to determine what amount of intervention is most effective, while also being minimally interruptive, we need more high-quality primary studies," said Sandbank. "Few high-quality studies systematically compare the same intervention offered at different amounts."

Many different types of intervention may be offered to young children on the autism spectrum. Behavioral interventions systematically teach functional and cognitive skills through direct one-on-one teaching and tend to be very intensive. Developmental interventions focus on improving children's engagement and social interaction through play with their caregivers and are frequently provided for only a few hours per week. Naturalistic developmental behavioral interventions blend behavioral and developmental approaches. All of these interventions can look very similar or very different in their implementation, depending on the provider.

In order to thoroughly investigate the impact of intervention amount, researchers measured it in three ways. They defined "intensity" as the amount of intervention provided within a given time frame (such as hours a day), "duration" as the total amount of time (in days) that intervention is provided, and "cumulative intensity" as an overall metric that describes the total intervention provided over the total duration.

Using these three metrics, researchers explored whether intensity, duration, or cumulative intensity were associated with developmental benefit in young autistic children. At the same time, researchers wanted to determine if the strength of the relationship between the metrics and developmental improvement differed depending on the type of intervention provided.

Their final sample for their meta-analysis included 144 separate studies involving a total of 9,038 participants. Knowing that neuroplasticity, or the brain's ability to adapt, is at its height during this developmental period and may affect the success of intervention, researchers controlled for participant age. They also accounted for the quality of included studies and intervention type with the help of meta-regression models.

Taking all of these factors into account, researchers found no evidence that higher intensity interventions provided increased benefits for young autistic children. The evidence contrasts the results of quasi-experimental studies and some meta-analyses suggesting that high-intensity behavioral interventions are associated with more cognitive gains in young children on the autism spectrum.

"There's probably a minimum amount of intervention needed to provide any benefit at all, and an optimal amount that is dependent on the child," said Sandbank. "Unfortunately, right now, we don't have clear evidence as to what that amount should be," said Sandbank.

This research suggests clinicians should avoid providing any specific amount of intervention as a default recommendation. Instead, clinicians should inform families that no single intervention amount is right for every child, and that a careful balance must be struck to meet the demands of intervention with other needs of the child to ensure that they thrive.


More information: Micheal Sandbank et al, Determining Associations Between Intervention Amount and Outcomes for Young Autistic Children, JAMA Pediatrics (2024). DOI: 10.1001/jamapediatrics.2024.1832

ABA and Gender

 In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

Peterson T, Dodson J, Sherwin R, et al. (May 07, 2024) Comparative Effects of Applied Behavior Analysis on Male and Female Individuals With Autism Spectrum Disorder. Cureus 16(5): e59802. doi:10.7759/cureus.59802

Abstract

Introduction

Current evidence-based treatments for autism spectrum disorder (ASD) are based on applied behavior analysis (ABA). However, research on gender differences in ABA therapy response is limited. This study seeks to (1) confirm the 4:1 male-to-female ratio reported in the literature and (2) identify any possible gender differences in target behaviors over seven timepoints measured every two weeks.

Materials and methods

For three months, from March 19, 2023, to June 11, 2023, a team of 3-5 behavioral technicians per individual collected daily data on general target mastery for 100 individuals with ASD treated with ABA. Data was collected at seven timepoints every two weeks. Descriptive demographics were computed. Two independent sample t-tests were performed to determine significant or nonsignificant gender differences with the seven timepoint variables.

Results

Nonstatistically significant gender differences (p > .05) were found on all seven cumulative target behavior timepoints measured at two-week intervals. For targets mastered Time 1, baseline between males and females, there was no significant difference in the means for males (M = 1.0571, SD = 1.9196) and females (M = 2.0455, SD = 3.9457) (t(90) = -1.591, p = 0.115, confidence interval (CI) = -2.2223, 0.2456, d = -0.389). For targets mastered Time 2, two weeks between males and females, there was no significant difference in the means for males (M = 3.7132; SD = 4.5065) and females (M = 4.0682, SD = 5.1508) (t(88) = -0.310, p = 0.757, CI = -2.6305, 1.92056, d = -0.076). For targets mastered Time 3, four weeks between males and females, there was no significant difference in the means for males (M = 7.0956; SD = 8.7781) and females (M = 8.6136; SD = 11.2799) (t(88) = -0.656, p = 0.514, CI = -6.1173, 3.0811, d = -0.161). For targets mastered Time 4, six weeks between males and females, there was no significant difference in the means for males (M = 13.1728, SD = 16.2003) and females (M = 13.0682, SD = 16.9272) (t(88) = 0.026, p = 0.979, CI = -7.8779, 8.0871, d = 0.006). For targets mastered Time 5, eight weeks between males and females, there was no significant difference in the means for males (M = 17.2096; SD = 18.8546) and females (M = 17.4286, SD = 22.1683) (t(87) = -0.045, p = 0.965, CI = -9.9773, 9.5393, d = -0.011). For targets mastered Time 6, 10 weeks between males and females, there was no significant difference in the means for males (M = 21.0074, SD = 21.3329) and females (M = 20.6818, SD = 26.1231) (t(88) = 0.059, p = 0.953, CI = -10.6752, 11.3262, d = 0.014). For targets mastered Time 7, 12 weeks between males and females, there was no significant difference in the means for males (M = 26.1196, SD = 24.2235) and females (M = 29.6364, SD = 33.7406) (t(89) = -0.536, p = 0.593, CI = -16.5431, 9.5094, d = -0.131).
Conclusions

The study indicates that ABA treatments may be equally beneficial for both genders with ASD, showing no significant gender differences. However, the broad CIs in this study imply a level of statistical uncertainty, indicating potential gender differences, suggesting the results may not be uniform across genders. These findings challenge assumptions on gender-specific treatment responses, implying that ABA treatments shouldn’t be recommended based on gender. Instead, individual needs should guide treatment recommendations. Future research could consider other response moderators like age, ASD severity, or coexisting mental health conditions.

Colorado Closures

 The Politics of Autism includes an extensive discussion of autism service providers.

Some are closing.

Nick Coltrain, The Denver Post:

Since 2021, at least 13 companies—operating about 35 clinics of different sizes—have closed or left the state over reimbursement rates that haven't kept up with rising costs, according to research by the Colorado Association for Behavior Analysis. Those closures have affected treatment for some 1,380 patients, and an estimated 1,000 Coloradans lost their jobs, according to the group.

"Colorado is relatively unique in the Medicaid landscape right now because of the number of programs that have closed and/or exited the state," said Mariel Cremonie-Fernandez, the vice president of government affairs for the national Council of Autism Service Providers.

..

Rebecca Urbano Powell, executive director of Seven Dimensions Behavioral Health, said she watched her waitlist balloon from two months to six months as the industry contracted in recent years. And with low reimbursement rates, she's lost entry-level staff to Starbucks and Walmart, she said, effectively cutting off entry into the behavioral health workforce before workers can get their feet under them.

"They could choose to work with kids with very severe, dangerous behaviors, or go work at Starbucks as a barista, and make the same—if not more—as a barista," said Urbano Powell, who also is board president of the Colorado Association for Behavior Analysis.

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The growing role of private equity investment firms also complicates matters, HCPF warned, as firms buy up providers and close down autism services when they don't hit profit goals.

HCPF cited a national report from the Center for Economic Policy and Research that found private equity firms "move in and skim funds to pay high salaries to executives and outsized returns to private equity partners." The study did not cite any Colorado-specific impacts but noted that many of the firms it looked at operate in dozens of states.

While some budget committee members were "agnostic" to ownership structures of autism providers, as one put it, Sen. Jeff Bridges was more skeptical. While the Arapahoe County Democrat ultimately voted to increase funding, he worried it would set a precedent that investment firms could demand money to pad profits to their liking—and hold autism services hostage to do so.

"To me, it feels like a monopoly," Bridges said. "There's a real problem here if private equity is coming in here and doing what they did to other markets to autism providers. If those folks are getting in the way, then we absolutely have to take the fight to them."

NBC Report on CARD and Private Equity

The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.   After its purchase by Blackstone, the Center for Autism and Related Disorders went bankrupt.

At NBC, Gretchen Morgenson reports: 

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.

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For ongoing CARD customers, things seem to be improving. The company’s founder, Doreen Granpeesheh, bought back most of its operations last August. A psychologist and board-certified behavior analyst, she told NBC News she’s dedicated to reviving the company’s services.

The ABA Debate Continues

 In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

 Jessica Winter at The New Yorker:

In recent years, A.B.A. has come under increasingly vehement criticism from members of the neurodiversity movement, who believe that it cruelly pathologizes autistic behavior. They say that its rewards for compliance are dehumanizing; some compare A.B.A. to conversion therapy. Social-media posts condemning the practice often carry the hashtag #ABAIsAbuse. The message that A.B.A. sends is that “your instinctual way of being is incorrect,” Zoe Gross, the director of advocacy at the nonprofit Autistic Self Advocacy Network, told me. “The goals of A.B.A. therapy—from its inception, but still through today—tend to focus on teaching autistic people to behave like non-autistic people.” But others say this criticism obscures the good work that A.B.A. can do. Alicia Allgood, a board-certified behavior analyst who co-runs an A.B.A. agency in New York City, and who is herself autistic, told me, “The autistic community is up in arms. There is a very vocal part of the autistic population that is saying that A.B.A. is harmful or aversive or has potentially caused trauma.”

Until recently, the American Medical Association officially endorsed “evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy.” Last summer, the medical students’ body of the association proposed that the organization withdraw its support for A.B.A., citing objections by autistic self-advocates. The association did not adopt the resolution as submitted, but its house of delegates eventually approved an amendment removing any explicit reference to A.B.A., and autistic activists spread the word that A.B.A. no longer appeared to have the outright endorsement of the nation’s largest medical society.

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In recent years, private equity has taken a voracious interest in A.B.A. services, partly because they are perceived as inexpensive. Private-equity firms have consolidated many small clinics into larger chains, where providers are often saddled with unrealistic billing quotas and cut-and-paste treatment plans. Last year, the Center for Economic and Policy Research published a startling report on the subject, which included an account of how Blackstone effectively bankrupted a successful A.B.A. provider and shut down more than a hundred of its treatment sites. Private-equity-owned A.B.A. chains have been accused of fraudulent billing and wage theft; message boards for A.B.A. providers overflow with horror stories about low pay, churn, and burnout. High rates of turnover are acutely damaging to a specialty that relies on familiarity between provider and client. “The idea that we could just franchise A.B.A. providers and anyone could do the work—that was misinformed,” [Alison] Singer, of the Autism Science Foundation, said.

Waiting in Michigan

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of qualified professionals.

Andrea M. Stephens and colleagues have an article at Behavior Analysis in Practice titled
Delays to Behavioral Therapy in Michigan for Children Diagnosed with Autism: A Summary of Needs Assessment Outcomes to Inform Public Policy Advocacy Initiatives

Abstract

Children diagnosed with autism spectrum disorder (ASD) are eligible to receive behavioral health services in Michigan, including those based on the principles of applied behavior analysis (ABA). Demand for these specific services far outpaces the number of qualified professionals in the state (Yingling et al., 2022), thus resulting in delayed access to a much-needed service. The purpose of our survey was twofold. First, we surveyed families throughout Michigan (N = 78) to identify the types of barriers encountered and the extent to which families of autistic individuals experience them when pursuing ABA services. Second, our survey assessed the needs of these families during service delays in an attempt to understand how to best support them during this time. Results indicated that 73% of children spent time on a waitlist, varying in duration from 1 month to over 1 year. Further, most caregivers indicated they were concerned about their children’s behavior while awaiting services and would have been interested in training to help them manage behavioral concerns and teach new skills to their children. We conclude by reviewing recommendations for addressing child and caregiver needs during this time and discussing implications for public policy advocacy initiatives.

Indiana Medicaid Cuts

The Politics of Autism includes an extensive discussion of insurance and Medicaid services.

Isabella Volmert at AP:

Indiana’s Family and Social Services Administration said the cost of Medicaid reimbursement for the behavioral therapy, commonly referred to as ABA, has ballooned in recent years because of the growing number of children seeking the services and the amount that providers have billed the state. The state plans a universal, hourly reimbursement rate for the therapy, but the planned amount is lower than what providers have previously received on average.

Advocates and centers worry this will mean accepting fewer patients or even closing, as has happened in other states such as Colorado this year.

“Companies just kept leaving and it just kind of turned into a crisis situation,” said J.J. Tomash, who leads an ABA provider in Colorado called BehaviorSpan. He blamed Medicaid reimbursement rates that have not kept up with the cost of living.

Medicaid began covering the services in 2016, and providers in Indiana set their own rates until now. But centers say the new rates are still not enough to keep them running and are far below the previous statewide average of $97 per hour.

Indiana Act for Families, a coalition opposing the new rates, said the proposal is 10% below providers’ operating costs. Although Indiana has said the new rates are aligned with pay in other states, the coalition argued the state used outdated data in their comparison.

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ABA is not without critics. Zoe Gross, advocacy director at the Autistic Self-Advocacy Network, said ABA’s goal is to eliminate behaviors considered autistic and teaches children to conform with neurotypical behaviors.

“It teaches you that the way you naturally behave is not OK,” she said.

But families who have found it helpful find it hard to imagine a future without access.

Venture Capital and Autism

The Politics of Autism includes an extensive discussion of autism services  

Michael Bernick at Forbes:

Can venture capital drive innovation in the autism field, as it has in other fields? Can the dynamism of capital markets be applied to autism’s stubborn challenges of diagnosis, therapies, services and employment?

In the past few years, several autism-focused venture capital funds have been launched, including Moai Capital, Autism Impact Fund, and Neuvation Ventures. Their founders and chief leaders have family members on the autism spectrum, and come to their funds with a strong sense of mission and urgency. The funds are structured as traditional venture capital funds, aiming to maximize investor returns, but with focus on products for improving the lives of individuals with autism.

Anyone in the autism community today—persons with autism, family members, advocates—will be encouraged to see the innovation already underway in the field. Companies in the venture capital portfolios are rapidly advancing the sciences in diagnostic techniques, early intervention, and therapies/therapeutics to address autism co-morbidities.

Currently the autism diagnosis is a behavioral one—behaviors are observed and evaluated and fit into categories. The process is given to wide variation in interpretations and to misuse. Companies in the venture capital portfolios are developing blood tests and brain imaging tests that can far more effectively give meaning to any autism diagnosis.

The main behavioral intervention today is Applied Behavioral Analysis (ABA). ABA is difficult to access, very uneven in quality of services, and effective with only a limited number of children with autism. Portfolio companies, drawing on speech and language technologies as well as big data insights, are developing alternatives to ABA.

Pushback Against Cuts in Indiana

The Politics of Autism includes an extensive discussion of insurance and Medicaid services.

Whitney Downard at Indiana Capital Chronicle:

A bipartisan group of lawmakers from both chambers sent a letter to Gov. Eric Holcomb earlier this week urging him to reconsider the proposed rate cuts for Applied Behavioral Analysis (ABA) therapy, a specialized form of treatment for autistic children.

The letter, authored by Shelbyville Republican Rep. Robb Greene, was signed by 13 senators and 29 representatives from across the state. Greene, a freshman legislator, shared the impact of ABA therapy on his young son. Rep. Robb Greene, R-Shelbyville (Photo from the House Republicans)

“When my son, RG, was diagnosed with (Autism Spectrum Disorder) at age 3, he was functionally non-verbal. At an age when many parents are experiencing the joy that accompanies each milestone, we were told that our son had the developmental parity of a nine-month-old,” Greene wrote in a statement.

“… Within 2 months (of ABA therapy), RG went from very few vocalizations to the start of meaningful exchanges with us, his peers and his therapy team. Within the first year, he acquired many necessary life skills, such as beginning and mastering potty training, efforts made toward dressing himself and learning coping mechanisms that enabled our family to socialize together in more public settings,” Greene continued.

Greene said RG’s current ability to communicate basic needs and advocate for himself wouldn’t have occurred without “intensive” ABA therapy. His son now attends kindergarten at the family’s local public school.

“Simply put, ABA saved my son’s life,” Greene said.

Medicaid ABA for Autistic Adults in Nevada

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Tabitha Mueller at The Nevada Independent:

A need for access to lifelong autism treatment services is one of the reasons Sen. Heidi Seevers Gansert (R-Reno) sponsored and helped pass SB191 during the 2023 legislative session.

The measure expands the coverage age for Applied Behavior Analysis (ABA) therapy services for people with autism from 21 to 27 for those receiving Medicaid, a government-funded health insurance for low-income people and those with disabilities. Seevers Gansert said she introduced the legislation as a way to provide relief for families and individuals who faced losing coverage as they aged out.

“There was a cliff. The child would reach a certain age, and then there were really no services available unless someone could afford to do it out of pocket,” Seevers Gansert said. “And for the Medicaid population, they can't afford to do anything out of pocket.”

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 The little-noticed bill expanding coverage for ABA services passed unanimously out of both chambers of the Legislature in early June. Gov. Joe Lombardo signed it on June 13. 

The legislation is estimated to cost about $2.7 million over the next biennium, with $1.8 million coming from the federal government and the rest coming from state and local funds.

As of this year, under Medicaid, more than a thousand patients younger than 21 with autism receive ABA services in Nevada. 

Seevers Gansert estimates that the new legislation will help expand coverage for ABA services to nearly 130 adult patients on Medicaid, according to information provided by the state. Officials with Nevada Medicaid also said the law could lead to continued care and improved health outcomes for those with autism spectrum disorder and potential savings for out-of-pocket expenses.

But some of these numbers could be affected by statewide shortages of ABA providers and the high cost of treatment — two factors that Board Certified Behavior Analyst Molly Halligan knows first-hand.

Proposed IN Medicaid Limits

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Shari Rudavsky and Kayla Dwyer, Indianapolis Star

 To contain costs, the Families and Social Services Administration, which oversees Medicaid, is proposing standardizing rates for the therapy at a level that many providers worry could threaten their ability to continue providing these services. FSSA disputes this, saying the rate they came up with is based on providers' own cost data. That's true, but FSSA is proposing rates at the low end of a wide scale.

Currently, the hourly reimbursement providers receive from the state varies from $46 an hour to five times that. The average is $91 an hour.

Now the state is proposing instituting a flat rate of $55 an hour for the most common form of therapy ― meaning, in comparison to what the providers have been accustomed to receiving, a small handful of providers would get a bump, but most would experience a dramatic decrease.

Providers, too, agree that there needs to be a standardized rate. But choosing $55, as FSSA is proposing, goes too far, too quickly, they argue.

"I definitely think there’s some middle ground, but what we're experiencing now, if these in-center ABA therapy centers are to close, they (the children) are going to be pushed into the school system that’s already overwhelmed," said Hillori Wanninger, a board certified behavior analyst with Shine Pediatric Therapy. "This is a very rippling effect."

Doreen Granpeesheh Gets CARD Back

 The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.  There are critics.

Dietrich Knauth at Reuters:

The Center for Autism and Related Disorders, which operates 130 treatment centers in the U.S., received bankruptcy court approval on Wednesday to sell itself back to its founder for $48.5 million.

The Nevada-based company, which is majority-owned by private equity firm Blackstone (BX.N), filed for bankruptcy in June, saying its business had suffered from higher labor costs, unprofitable long-term contracts with government and commercial healthcare providers, and a long-term shift to telehealth services.

U.S. Bankruptcy Judge David Jones approved the sale at a court hearing in Houston, Texas, saying he was "pleasantly surprised" the company's bankruptcy auction had managed to drive up the sale price from an initial $25 million bid.

"This is an important asset," Jones said. "Not only does it provide jobs and fill a spot in the market, it also provides a very valuable service to a segment of our population that needs help."

CARD Developments

 The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.  There are critics.

At Forbes, Phoebe Liu reports on the Center for Autism and Related Disorders:

By the time Blackstone took over, the company had already been struggling with employee turnover, especially that of entry-level therapists, due to a combination of low wages, the emotionally taxing work and frequent cancellations that led to an unstable income and schedule. [Doreen] Granpeesheh says CARD’s wages were “competitive” and emphasizes that its 24% turnover rate at that time among therapists was fairly standard in the autism treatment industry—not CARD-specific issues. Granpeesheh stayed on as CEO until the end of 2019. She wrote in a LinkedIn post in January this year that she stepped down because she was “tired and wanted time with [her] family … 40 years was long enough.”

Things got worse during the pandemic. Closures followed.

On June 11, 2023, CARD filed for Chapter 11 bankruptcy with just $2 million of cash in the bank and more than $240 million in debt, according to court filings, which also show that Granpeesheh now has a 21% stake in the bankrupt CARD. (Employees who reinvested some of their shares have 9% and Blackstone has the remaining 70%.)

Two days prior, as part of the bankruptcy proceedings, Granpeesheh and her business partner Sangam Pant—a managing partner at CARD from 2014 to 2019—entered an agreement to purchase the company for just $25 million, on top of assuming some of CARD’s liabilities. Granpeesheh says she can’t disclose the exact breakdown of the deal but that she is the majority owner; court filings say she will be responsible for 60% of guaranteed debts.

...

But she will have to face an environment that isn’t as friendly to ABA as it was in CARD’s fastest-growing days. Although punitive measures in ABA like using electric skin shock to correct behavior are mostly phased out, the therapy still has its critics, who say it prevents autistic children from engaging in self-stimulatory behavior like repeated motions or noises that can bring them relief. The University of Stirling’s Botha says the therapy is based on a “cruel” premise of making autistic people “appear normal.” The American Medical Association voted to remove its explicit endorsement of ABA at its annual meeting in mid-June, citing a need for more research on ABA’s potential negative effects and on treatment alternatives.

Outcome Standards

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Jamie Pagliaro at Health Affairs:

For children with autism, there are several competing forces at play that could potentially impact their futures. In an effort to help these children lead the most productive and successful lives, legislation mandating coverage of applied behavior analysis (ABA)—the current gold standard of treatment for autism—is making this valuable treatment accessible to all.

ABA is a systematic approach to teaching new skills such as communication, social interaction, and pre-academic and daily life skills, and reducing behaviors that may interfere with learning or present danger, using behavioral principles such as positive reinforcement. But the rapid explosion in demand for ABA and infusion of private equity into the industry raises concerns about the limited number of providers and the quality of services they deliver. In 2021, more than 50 private-equity firms held or previously held a majority stake in an autism service platform. And there are questions about how to transition from today's fee-for-service model to one focusing on patient-centered care, which is key to making quality a top priority, even in the face of economic pressures.

...

Getting lost in the fray is how providers can ensure patients achieve the best clinical outcomes. By changing the focus, the industry has the opportunity to set the stage for value-based care arrangements. This approach is one in which funding is based on outcome rather than the traditional fee-for-service model, which is the current payment structure for ABA with most health plans. However, even if the industry can agree on changing the focus, a critical component is still missing.

 The current void relates to generally accepted methods of measuring or predicting outcomes for individuals with autism receiving ABA treatment and standards for determining treatment dosages.

Big Merger of Providers

The Politics of Autism includes an extensive discussion of autism service providers. 

Laura Lovett at Behavioral Health Business:

Intellectual and developmental disability (IDD) nonprofits Merakey and Elwyn have announced their intentions to merge.

The pair recently signed a non-binding Memorandum of Understanding to create a joint company with a 12,000-person workforce caring for 55,000 individuals in 16 states. The partners said the merged company will be focused on delivering holistic care and coordinating physical, behavioral and educational services for people with IDD.

Combining the companies’ entities would create a business with just under $1 billion in annual revenue. Last year, Merakey reported $618 million in revenue, with Elwyn reporting roughly $385 million.

“We believe that this combination could dramatically improve the delivery of programs and services for our individuals and improve their quality of life, and we are tremendously excited about its potential,” Joseph S. Martz, CEO of Merakey, said in a statement. “An affiliation would maximize the resources to allow for significant new investment in programs and permit technology improvements that would be game-changing in terms of delivering a coordinated array of services.”

Lafayette Hill, Pennsylvania-based Merkey operates in 12 states. It provides behavioral health, IDD and educational services. The provider will bring 8,000 employees to the merger.

Meanwhile, Elwyn is a Media, Pennsylvania-based provider that offers education, treatment and supportive services to children and adults with autism and IDD. Founded in 1852, the provider currently operates in eight states.

Autism and Digital Services

The Politics of Autism includes an extensive discussion of autism service providers.  Since the book's publication, a big change has consisted of a massive increase in private equity and other investments.

At Digital Health Business and Technology, Gabriel Perna reports that startups are providing everything from online services to job-hunt platforms for autistic people.

“If you’re a tech company like Airbnb and you have venture capital, your mentality is typically, ‘grow, grow, grow,’” said Sarah Trautman, CEO of defy community, a company focused on preventing burnout among clinicians. “They don’t care if you’re running a huge deficit, they just want to get to scale and add in profit later…The issue that I think people are failing to consider is this requires human capital, and it really requires a ton of human capital.”

The money flowing into autism care has been plentiful. According to Digital Health Business & Technology’s funding database, more than $700 million in venture money has gone into autism-focused digital health startups since 2017. There have been 28 deals, including 17 in the last two years. That includes a $219 million round for Elemy in October 2021, a $105 million round for Brightline in March and a $60 million round for Cortica in June 2021. While most of these startups companies are singularly focused on autism, others like Brightline and Cortica aim to reach multiple patient populations.

...

One key reason for investor interest in the space is that every state has enacted a mandate requiring insurance carriers to cover services for autism spectrum disorder. Jonathan Mueller, CEO of Element RCM, a revenue cycle management company for autism service companies, said the funding trends follows what’s happened in other areas of medicine, such as home health and hospice care, after they were made reimbursable through insurance.

... 

Aaron Blocher-Rubin, founder and CEO of Arizona Autism United, a community-based nonprofit that provides ABA and other services to families, and other critics have concerns over the virtualized board-certified behavioral analyst model. “Autism is way too complex. Therapists are way too underqualified to be expected to [only receive virtual support]. There’s no research on a model like this,” he said.