Private Equity and Billable Hours

The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.   Insurance mandates and Medicaid spending have contributed to the growth trend.

Anna Wilde Mathews, Christopher Weaver, and  Tom McGinty at WSJ:

Many autism-therapy providers and an industry group cite studies of young children showing high-hour therapy can help those with severe challenges. Government officials and insurers have scrutinized long hours, at times pointing to other research, disputed by some providers, that raised questions about the correlation between long therapy hours and improved outcomes. New federal guidelines for Medicaid say there is no correlation.

Private-equity firms have poured hundreds of millions of dollars into building national chains of clinics to serve children diagnosed with autism. The Journal’s autism-treatment analysis looked at Centria, majority-owned by THL Partners; Action Behavior Centers, backed by Charlesbank Capital Partners; Hopebridge, acquired by Arsenal Capital Partners; Cerberus Capital Management-backed Lighthouse Autism Center; and Learn Behavioral, majority-owned by Gryphon Investors, which billed fewer hours a week, on average, than its competitors.

All five companies said they individualize treatment, including weekly hours, based on patient needs, not financial considerations.

The four companies with higher-than-average hours said the Journal’s analysis of Medicaid claims didn’t account for differences in the severity of patients’ autism, and that their nap policies aim to accommodate children’s sleep needs. Centria, Action and Lighthouse said their patients had more severe autism than average, justifying more therapy.

Centria said waking a 3-year-old as described by Hosking wouldn’t have complied with its policies, and such an incident wasn’t documented at the time. Action disputed the assertion in the Medicaid guidelines that treatment intensity doesn’t correlate with outcomes.

Former employees of the four higher-hour companies said in interviews they felt pressure to recommend long therapy schedules for children, and that centers sometimes turned away children who needed low weekly hours.

 

 

Provider Favors Licensing

 The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.   Insurance mandates and Medicaid spending have contributed to the growth trend.

In 1971, George Stigler wrote that "regulation is acquired by the industry and is designed and operated primarily for its benefit."  By seeking requirements such as occupational licensing, incumbents seek to limit competition.

Breaking News ABA:

Centria Autism told Florida’s applied behavior analysis (ABA) task force on October 5 that the state should license every provider location, charge each one $1,000 a year for inspections, and reduce Medicaid payments at locations that fail. The company operates in 11 states but does not provide ABA in Florida, according to the Florida Phoenix.

Shevaun Harris, secretary of the Agency for Health Care Administration (AHCA), which runs Florida Medicaid, chairs the task force but does not vote. She said she found it “interesting” that a provider would advocate licensing ABA facilities. “I just want to note our agency has been very intrigued by that concept,” she said, according to the Florida Phoenix. “We’ve had the same conversation here at the agency,” she added, citing “individuals going into people’s homes of very vulnerable kids.”

Florida recorded $6.57 billion in Medicaid and Children’s Health Insurance Program (CHIP) payments for ABA from 2023 through 2025, the highest state total in federal data AHCA presented in August. Lawmakers created the panel in 2026 to recommend changes to the program, from authorization limits to provider billing standards.

Private equity firm Thomas H. Lee Partners acquired Centria in 2019 in a deal reported at $415 million. The 74’s September analysis of federal Medicaid payment data ranked Centria first among the ABA providers it identified, with more than $440 million in payments recorded from 2019 through 2024. CEO David Harbour, who made the licensing pitch, said it could help “create standardization around the services,” according to the Phoenix.

AHCA separately asked whether required technician supervision should rise from at least 5% of service hours to 10% to 20%. Minutes approved at the meeting also document discussion of limits on approved hours. These remain proposals, rather than final task force recommendations.

Texas Proposal to Scrap Children's Autism Program

 In The Politics of Autism, I discuss services for people with intellectual and developmental disabilities.  Some states do a reasonably good job, but Texas is not one of them.

Sasha Draeger-Mazer at The Texas Tribune:

In its budget request to the Legislature for the 2028-2029 biennium, the Texas Health and Human Services Commission (HHSC) proposed eliminating funding for the Children’s Autism Program (CAP) entirely, stunning advocates, providers and parents.

“If the doors just completely close to access that at all, you just feel like it’s all caving in on you, like ‘how am I going to get some help?’” said Israel’s mother Elizabeth Solis, who has another son who obtains services through a CAP-funded program at the University of Houston-Clear Lake’s Center for Autism and Developmental Disabilities; she pays nothing for their services.

CAP, which started in 2008, contracts with 16 providers across Texas to provide focused applied behavior analysis (ABA) therapy to autistic children at a reduced cost based on their families’ incomes and insurance coverage. Children are eligible for up to 720 hours of ABA therapy, which advocates consider the gold standard for autism treatment, over their lifetime.

Over the last two years, the state spent $13.7 million on the program, and this year even expanded the program, extending eligibility to those up to 21 years old and removing a cap on yearly hours. In fiscal year 2026, the state autism program funded treatment for 583 children, but contractors report there are at least 1,000 more children on waitlists statewide.

Planning Legislation on Private Equity in Minnesota

 The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.   Insurance mandates and Medicaid spending have contributed to the growth trend.

Beth Hawkins at The 74:

Citing a recent 74 Million investigation, two Minnesota state senators announced they will seek laws regulating the influence of private equity investment firms on autism therapy providers.

“This report is outrageous,” said Minneapolis state Sen. Zaynab Mohamed, of the Democratic-Farmer-Labor Party. “The idea that Wall Street investors are exploiting these programs for profit is infuriating.”

Over the last decade, private equity investors — who are subject to very limited oversight — have bought hundreds of mom-and-pop autism therapy centers in Minnesota and elsewhere and consolidated them into lucrative networks. This played a major role in nationwide Medicaid reimbursements for a treatment called applied behavior analysis mushrooming from $400 million in 2019 to nearly $2 billion in 2024, The 74 investigation found.

According to a 74 analysis of U.S. Centers for Medicare and Medicaid records, private equity firms own almost half of the 50 companies with the highest claims — accounting for $3.1 billion of the almost $7 billion billed for during the investigation’s six-year window.

TRICARE and ABA

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

 Berkeley Lovelace Jr., Jason Kane and Erin McLaughlin at NBC:

ABA helps children with autism to develop important life skills, said Alycia Halladay, chief science officer at the Autism Science Foundation, a nonprofit advocacy group.

“It’s all about breaking things down into smaller steps, and then also providing the appropriate reinforcement for things,” Halladay said.

“This is how we all learn, by the way,” she added. “We all learn to go to the potty by somebody reinforcing us by going to the bathroom on the potty. We learned to be on time by people reinforcing us and giving us positive accolades for being on time. Kids with autism, they get it more intensely and they get it more directed based on the skill they need help with.”

Most states have mandates requiring private insurers to cover ABA or other behavioral interventions for children with autism, Halladay said.

Those mandates, however, don’t apply to the federal government, including federal programs such as TRICARE, she said. (Some federal programs do cover the therapy for children, including Medicaid and the Federal Employees Health Benefit, the government’s health insurance program for federal employees, retirees and their families.)

In 2021, Kristi Cabiao started a nonprofit called Mission Alpha aimed at pressuring both TRICARE and members of Congress to restore broad coverage of ABA. She lobbied Congress for an independent study reviewing the effectiveness of the therapy, which was launched that same year and conducted by the National Academies of Sciences, Engineering, and Medicine. Last September, the group published a 336-page report affirming that ABA should be included as a basic benefit under TRICARE, without the excessive administrative barriers that have disrupted treatment for children in military families.

The report stated the evidence to support ABA therapy “is robust” and meets “the Department of Defense’s own criteria of reliable evidence.”

Predatory Providers

 The Politics of Autism includes an extensive discussion of autism service providers.  Private equity firms now own many of them.   Insurance mandates and Medicaid spending have contributed to the growth trend.

Christopher Weaver and Anna Wilde Mathews at WSJ:

The autism-therapy industry, once a tiny corner of pediatric care, has exploded into a multibillion-dollar business, fueled by rising diagnoses, new providers entering the market and laws requiring insurers to cover more services. It has also attracted predatory providers who bill for phantom services, pad hours and charge steep fees for care delivered by low-wage workers with minimal training.

The billing abuses run wide. Aetna said the number of investigations that found likely fraud or abusive billing by autism-therapy providers in its private-plan business shot up by 300% between 2024 and 2025—and is on track to rise by another 50% this year.

...

Autism-therapy spending has become one of the fastest-growing healthcare expenses for many private insurance plans, insurers, employers and auditors say. The boom has also made the therapy one of Medicaid’s fastest growing segments, according to a Journal investigation published in March. Medicaid claims data showed providers billed as much as $340,000 per patient a year, the Journal reported.

In the private insurance sector, annual spending on hands-on autism therapy for about 40 large employers covering 3.5 million people doubled to $108 million from 2021 to 2025, according to claims data analyzed by the Health Transformation Alliance. The coalition, which helps companies including Walgreens and American Express track and manage medical spending, said that reflects more patients, more hours of service and higher prices.

...

Most of the therapy is delivered by behavior technicians, who in many states need little more than a high-school degree and often earn as little as $20 an hour. By the end of 2025, about 535,000 people were registered as behavior technicians in a federal database of healthcare providers, an increase of 457% from 2019, an analysis by the Journal found.

The front-line workers are overseen by behavior analysts, more highly trained professionals who often have master’s degrees and licenses and can supervise multiple technicians.

 

Practical Value

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  Uncertainty another major theme of the  book.  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.

Kevin D. Arnold at Psychology Today:

When your child is diagnosed with autism, and you begin an applied behavior analysis (ABA) program, a question quickly follows: How do I know this is actually working?

It is a reasonable question—and it turns out the field of applied behavior analysis answered it more than 50 years ago. In 1968, Donald Baer and his colleagues published the paper that defined what ABA is and what it requires. One sentence has stood as the standard ever since:

“If the application of behavioral techniques does not produce large enough effects for practical value, then the application has failed.” (Baer, Wolf, & Risley, 1968)

...

If you take one thing from this post, let it be this: Ask your child’s BCBA to show you data from outside the clinic. Data that reflects how your child is doing in the situations that matter most to your family. If that data exists and shows meaningful progress, your program is working. If it doesn’t exist, you now know what to ask for.

Practical value. It has been the standard since 1968. You have every right to hold your program to it. Your child doesn’t have the time to waste on a program that doesn’t emphasize practical value

References

Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91–97. https://doi.org/10.1901/jaba.1968.1-91

Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied Behavior Analysis (3rd ed.). Pearson.

Medicaid Cuts

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

 At KFF, Bram Sable-Smith and Andrew Jones report on Medicaid funding for applied behavior analysis:

Efforts to scale back come as state Medicaid programs have seen spending on the autism therapy balloon in recent years. Payments for the therapy in North Carolina, which were $122 million in fiscal year 2022, are projected to hit $639 million in fiscal 2026, a 423% increase. Nebraska saw a 1,700% jump in spending in recent years. Indiana saw a 2,800% rise.

Heightened awareness and diagnosis of autism means more families are seeking treatment for their children, which can range from 10 to 40 hours of services a week, according to Mariel Fernandez, vice president of government affairs at the Council of Autism Service Providers. The treatment is intensive: Comprehensive therapy can include 30-40 hours of direct treatment a week, while more focused therapy may still consist of 10-25 hours a week, according to guidelines released by the council.

It’s also a relatively recent coverage area for Medicaid. The federal government ordered states to cover autism treatments in 2014, but not all covered ABA, which Fernandez called the “gold standard,” until 2022.

State budget shortfalls and the nearly $1 trillion in looming Medicaid spending reductions from President Donald Trump’s One Big Beautiful Bill Act have prompted state budget managers to trim the autism therapy and other growing line items in their Medicaid spending.

So, too, have a series of state and federal audits that raised questions about payments to some ABA providers. A federal audit of Indiana’s Medicaid program estimated at least $56 million in improper payments in 2019 and 2020, noting some providers had billed for excessive hours, including during nap time. A similar audit in Wisconsin estimated at least $18.5 million in improper payments in 2021 and 2022. In Minnesota, state officials had 85 open investigations into autism providers as of this summer, after the FBI raided two providers late last year as part of an investigation into Medicaid fraud.

Rural Youths on Medicaid Get Fewer ABA Hours

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

Straiton-Webster, D., & Ingersoll, B. (2025). Short report: Disparities in hours of applied behavior analysis services for Medicaid-enrolled autistic youth. Autism, 0(0). https://doi.org/10.1177/13623613251392495

Abstract

To date, no studies have investigated whether disparities in hours of applied behavior analysis (ABA) exist in the Medicaid system. We used multilevel modeling to analyze Medicaid billing claims for 1,028 autistic youth under the age of 21 years to examine the extent to which there were disparities in hours of ABA services for Medicaid-enrolled youth based on race/ethnicity and rurality. Although younger children received more hours of ABA, F(1, 964.63) = 118.28, p < .001, there were no statistically significant differences in hours of ABA based on minoritized race/ethnicity status or sex. On average, youth served in rural areas received significantly less hours of ABA per month than those in non-rural areas, F(1, 122.13) = 7.89, p = .006; youth in rural areas received 10.86 less hours per month than those in non-rural areas. Results suggest that publicly funded service systems like Medicaid may reduce ABA service disparities by race/ethnicity. Policymakers should focus on improving service provision for youth in rural areas.

From the article:

We found robust evidence of treatment disparities based on rurality; youth served in rural areas received 10.86 hr less of ABA per month compared to those in non-rural areas. Rural areas experience greater geographic barriers, which affect access to both center-based services (e.g., family’s ability to commute to an agency) and home-based services (e.g., provider’s ability to commute to a family's home). Indeed, a recent study found that providers in this system reported difficulty accessing families in rural areas as a significant barrier to the delivery of ABA services (Straiton et al., 2021). These geographic barriers could lead to a higher number of unscheduled or canceled sessions. Furthermore, based on the uneven geographic distribution of autism services, providers in rural areas may need to serve more youth than those in urban and suburban areas (Drahota et al., 2020; Yingling et al., 2022), which limits the number of treatment hours that can be scheduled per child. To improve access to services in rural areas, policymakers and agency leaders should consider targeted recruitment methods and incentive structures for recent graduates to practice in rural locations, provision of flexible supervision models for new graduates, increased use of telehealth service models, and remote consultation services for complex cases (Albright & Williams, 2021; Dew et al., 2013; Mazurek et al., 2017).

 

Report Supports Tricare Funding for ABA

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

 Karen Jowers at Military Times:

Defense Health Agency officials should formally authorize Applied Behavior Analysis, a widely recognized intervention to help children with autism, as a basic Tricare benefit, according to a report on the findings of a congressionally mandated independent study.

The report, conducted by the National Academies of Sciences, Engineering and Medicine, debunks DHA officials’ repeated assertion that ABA services don’t meet their standards for reliable medical evidence.

The researchers lay out their analysis of why ABA meets Tricare’s own standards, defined in law.

Researchers recommend this major shift in Tricare’s policies for military family members diagnosed with autism spectrum disorder, citing problems with an 11-year-old demonstration project that in effect limits the care available for these children.

“It’s time for ABA to be a basic benefit in the Defense Health Agency,” said Dr. Eric Flake, a retired Air Force colonel who is a member of the committee that conducted the study, during a webinar Tuesday.

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)

...

 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.

...

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.

 ...

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.

...

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.

...

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.