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.

 

ABA Funding Turmoil

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Cases of fraud and overbilling have led to a backlash.

Maya Goldman at Axios:

Where it stands: States and Medicaid managed care plans are scrutinizing more autism program spending and imposing cost controls.

• Nebraska cut Medicaid payments for applied behavioral analysis by up to 80% last year. Indiana policymakers have proposed payment caps and reduced rates. New York is considering legislation that would make similar changes.
• Medicaid managed care insurers like UnitedHealth Group have also limited coverage for applied behavioral analysis in some states.

Yes, but: The changes are causing significant upheaval for families that have been using applied behavioral analysis.

• One mother in Arizona told Axios Phoenix that her 3-year-old son spent eight months on a waitlist for services before he got into a program last year.
• Their insurance plan has since removed the provider from its network. The mother said she'll probably have to quit her job when her son loses coverage for his 40-hour-a-week therapy in May.
• North Carolina reversed some cuts to Medicaid payment for applied behavioral analysis services last year after families of kids with autism sued the state.

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.

A release from Brown University:

Private equity firms have acquired more than 500 autism therapy centers across the U.S. over the past decade, with nearly 80% of those acquisitions occurring over a four-year span, according to a new study from researchers at the Brown University Center for Advancing Health Policy through Research.

Study author Yashaswini Singh, a health economist at Brown's School of Public Health, said the work highlights how financial firms are rapidly moving into a sensitive area of health care without much public scrutiny or data on where this is happening or why.

"The big takeaway is that there is yet another segment of health care that has emerged as potentially profitable to private equity investors and it is very distinct from where we have traditionally known investors to go, so the potential for harm can be a lot more serious," Singh said. "We're also dealing with children who are largely insured by Medicaid programs, so if private equity increases the intensity of care, what we're really looking at are impacts to state Medicaid budgets down the road."
Study findings and national context

The findings of the analysis were published in JAMA Pediatrics and offer one of the first national assessments of private equity's growing role in autism therapies and services. Autism diagnoses among U.S. children have risen sharply in recent years, nearly tripling between 2011 and 2022, and the condition has been in the national spotlight amid political debate falsely linking autism to childhood vaccines.

The researchers, Singh said, did not evaluate the impacts of private equity ownership on access to treatment, quality of care or the experience of families seeking services. The findings do suggest that investment has been concentrated in states with higher rates of autism diagnoses among children and states that have fewer limits on insurance coverage.

The researchers identified a total of 574 autism therapy centers owned by private equity firms as of 2024, spanning 42 states. Most of those centers were acquired between 2018 and 2022, the result of 142 separate deals. The largest concentrations of centers were in California (97), Texas (81), Colorado (38), Illinois (36) and Florida (36). Sixteen states had one or no private equity-owned clinics at the end of 2024.

States in the top third for childhood autism prevalence were 24% more likely to have private equity–owned clinics than others, according to the study.

The scale and speed of acquisitions underscore the growing trend of private equity's entry into the market. According to Singh, researchers were prompted to investigate after hearing anecdotal reports from families and health providers about changes following private equity takeovers.

The primary concern is private equity firms putting money over families, said Daniel Arnold, a senior research scientist at the School of Public Health.

"It's all about the financial incentives," Arnold said. "I worry about the same types of revenue generating strategies seen in other private equity-backed settings. I worry about children receiving more than the clinically appropriate amount of services and worsening disparities in terms of which children have access to services."

To establish a baseline of where private equity firms are investing and why, the team used a mix of proprietary databases, public press releases and manual verification of archived websites to track changes in ownership. Unlike public companies, private equity firms and private practices are not required to disclose acquisitions, making data collection challenging and labor-intensive.

The team now hopes to examine how private equity ownership affects outcomes, including changes in therapy intensity, medication use, diagnosis age or how long children stay in treatment. They will determine whether these investments are helping meet real needs or are primarily a way to make money.

"Private investors making a little bit of money while expanding access is not a bad thing, per se," Singh said. "But we need to understand how much of a bad thing this is and how much of a good thing this is. This is a first step in that direction."

Iowa Lifts Dollar Cap and Age Limit for Insurance

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

Kayla James at KCCI-TV in Des Moines:

A new Iowa law that expands insurance coverage for Iowans with autism, impacting families across the state went into effect Jan. 1. It’s one many are calling "life-changing," including a family in Ankeny.

The Lust family says the law, HF 330, has the power to make real change for so many people across the state. It updates state insurance rules to remove annual and lifetime dollar caps on autism coverage in group plans covered under Iowa law, meaning insurers can no longer cut off autism benefits once a family reaches a specific spending limit. It also removes an age cap.

Under the previous state law. coverage was capped at $36,000 per year, and Iowans with autism spectrum disorder were covered until they turned 21-years-old.

...

The law also adds limits on insurance companies. It prevents them from capping the number of outpatient visits for autism treatment or applied behavior analysis.

State Representative Eddie Andrews sponsored the bill.  He is a candidate for the Republican gubernatorial nomination.

Andrews says institutions have been hard at work since the bill was signed to make sure they can provide care for adults, too.

“Normally it would have already started on July 1 of last year, but we gave them extra time to expand and prepare for today, so they should be ready to go,” said Andrews.

These changes give a sense of security for people and families like Brandon’s, who continue to watch him succeed and grow.

“A lot of us parents — we call it 'the cliff' when they turn 18 because a lot of things start ending — and so it’s nice that this is one thing that’s going to be able to continue for him,” said Kerry Lust.

Disparities in Autism Screening

In The Politics of Autism, I discuss the evaluation and diagnosis of young children.  Screening is an important part of the process.

Harrison, A.J., Bowman, K.L., Bub, K.L. et al. Examining Sociodemographic Factors Related to Autism Screening Rates of Children in Early Intervention. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-07154-7

Abstract:

Purpose

Routine developmental screening is essential for early identification of autism. Reliable autism screening is even more valuable for individuals from minoritized groups who are often under-detected and receive later diagnoses. Despite this importance, disparities in access to screening and accurate identification persist. Given these disparities, we were interested in examining group differences in autism screening rates at 18 and 24 months of age among children referred to Georgia’s Part C Babies Can’t Wait (BCW) program between 2018 and 2022.
Method

Among a sample of 52,282 infants and toddlers enrolled in BCW, as hypothesized males and children with private insurance had higher screening likelihoods compared to females and children with public insurance.

Results

Unexpectedly, Black and Hispanic children were more likely to be screened than their counterparts. To examine this further, an examination of screening timing revealed that White and male children were more likely to be screened before their referral to BCW compared to peers.

Conclusion

This reveals continued inequities in screening timing but suggests that BCW providers serve an important role in identifying children who may have been missed in other settings.

From the article:

Using a large sample of families participating in state-funded EI, the current study documented continued sociodemographic variability in terms of autism screening rates and the timing of autism screening among young children. The first research question focused on who received screening and the second research question focused on timing differences within children who were screened. In alignment with previous research (Eldeeb et al., 2023; Evans et al., 2018; Kuhn et al., 2021), we found that males and children from families with private insurance were more likely to be screened at either 18- or 24-months compared to females and families that did not report having private insurance. In this dataset, we observed a higher prevalence of autism screening rates among Black children compared to White peers, and Hispanic children compared to non-Hispanic children. More specifically, within this dataset, Black and Hispanic males living in metropolitan settings were more likely to be screened compared to White and non-Hispanic peers. This finding contradicts past research showing inequities in screening rates among racially and ethnically diverse children (Aylward et al., 2021; Carbone et al., 2020; Hirai et al., 2018; Mandell et al., 2009; Wiggins et al., 2020). To further explore the current dataset, among those with screening data we examined if this date was before or after their enrollment into BCW. It was revealed that the unique racial finding indicated an underlying screening disparity in regard to timing. Among the subset of children screened, we observed that White children were significantly more likely to be screened before enrollment in EI (BCW), whereas Asian, Native American and Alaskan, and Black children were more likely to be screened after entry into BCW. These data highlight that delays in screening are still prominent for some minoritized groups but also demonstrate how community agencies can help ensure universal screening across groups.

Early screening of autism primarily falls under the jurisdiction of primary care physicians engaging in early well visits (Coury et al., 2017). Previous research has documented that autism screening is not equitable across practices. For example, pediatricians with high rates of patients with Medicaid have very low rates of autism screening (Arunyanart et al., 2012). The sociodemographic differences observed in this study reveal the continued prominence of screening disparities among minoritized racial and ethnic groups in these traditional screening settings. This also aligns with research from minoritized communities documenting a lack of support from primary care physicians (Horiuchi et al., 2023; Mendoza et al., 2024), which leads to the need to advocate with greater fervor to receive care equitable to peers. Given these persistent sociodemographic screening discrepancies in primary care settings (Wallis, 2021), other community providers are being called upon to help fill the early autism screening gap (Fein et al., 2017; Nowell et al., 2015). In this study, the higher screening rates within BCW for Black and Hispanic children not previously screened highlight the crucial role EI providers can play in improving screening disparities. These study findings align with the documented gap that Spanish-speaking Latine parents often encounter between when they first voice their concerns and the actual age of diagnosis (Wallis et al., 2022).

The finding in this study that autism screening more readily occurred in males compared to females aligns with much of the existing literature (Eldeeb et al., 2023; Evans et al., 2018). These persistent findings reflect the bias to more readily notice autism in children representing the White male autism phenotype (Cruz et al., 2024; D’Mello et al., 2022). Thus, more research must focus on better understanding the female autism phenotype and how it may be overlooked using current screening and diagnostic assessment practices (Napolitano et al., 2022). For example, autistic females may have strengths in their social-communication skills and have a higher tendency to mimic and imitate social skills when compared to autistic males, which might result in hesitancy to deem screening necessary (Head et al., 2014).

Of note, geography or urbanicity also played a meaningful role in our findings. Children from rural areas were more likely than those from metropolitan areas to be screened before BCW and children from micropolitan areas were less likely to be screened before entry into BCW (e.g., screened later than children in metropolitans). The difference between metropolitan and micropolitan areas aligns with previous research showing a higher prevalence of autism rates in urban areas of the United States that likely have a high density of university-medical centers, such as Atlanta, Georgia (Bradshaw et al., 2024). This is likely due to differences in proximity to qualified providers, available resources at the county level, and other sociodemographic factors that are often associated with rural settings (e.g., education level and race; Bradshaw et al., 2024; Vanegas et al., 2023). The finding that children from rural areas were being screened earlier than metropolitan areas was less expected. Research documenting close relationships between rural doctors and patients might serve as one potential explanation for this finding (Desjarlais-deKlerk & Wallace, 2013) but this does not align with the majority of the published data (Antezana et al., 2017).

Families with lower incomes have documented disparities in accessing a myriad of treatments (Smith et al., 2020) and assessment services (Zuckerman et al., 2014). Similar to past research documenting diagnostic disparities tied to public insurance (Kuhn et al., 2021), in this study, children from families reporting having private insurance were more likely than those that did not report it to be screened. General factors preventing equitable care reported by families most commonly include financial stress, a limited number of available providers and resources, a lack of parent and/or provider education, and societal stigma (Aylward et al., 2021; Elder et al., 2016; Zuckerman et al., 2017), many of which have a financial component. Barriers specific to the low-income community documented in the literature include the pronounced shortage of adequate providers among households that rely on Medicaid (Aylward et al., 2021). Parents often serve a crucial role in the identification process (Raspa et al., 2015); however, documented knowledge deficits among low-income populations related specifically to the early childhood delays most related to autism also can contribute to screening delays (Campbell et al., 2019).

 

Barriers to Adult Diagnosis

Abu-Ramadan, T.M., Tassone, A.U., Andrzejewski, T.M. et al. Diagnostic Experiences and Barriers to Diagnosis Among Autistic Adults in the United States: Associations with Diagnostic Timing and Gender. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-06986-7

Understanding Autistic experiences with autism diagnostic processes in the United States is an important priority, including whether assessment experiences differ by diagnostic timing (whether individuals were diagnosed as a child or adult) and gender. Autistic adults (N = 129) who self-consented to participate in online research completed a survey assessing various domains of assessment experiences (e.g., factors leading to an assessment, assessment visits, emotional reactions to diagnosis, post-diagnostic support, diagnostic satisfaction, diagnostic barriers). Analyses examined correlates of diagnostic satisfaction and differences in diagnostic experiences by diagnostic timing and gender (cisgender women, cisgender men, gender diverse group). Fewer barriers to diagnosis, receiving a written report, seeing fewer providers, receiving post-diagnostic resources, and feeling relieved in response to the diagnosis related to higher diagnostic satisfaction. Adult-diagnosed individuals were more likely to raise the question of whether they were Autistic themselves, have mental health concerns contribute to seeking an assessment, and have more positive emotional reactions to the diagnosis compared to child-diagnosed individuals. Barriers and desired post-diagnostic supports also differed by diagnostic timing. Cisgender women and individuals in the gender diverse group were more likely to feel relieved in response to their autism diagnosis. The gender diverse group was most likely to desire post-diagnostic support regarding trauma and suicidality and reported the highest number of barriers to diagnosis. Diagnostic timing and gender relate to a range of diagnostic experiences. Findings highlight the importance of enhancing post-diagnostic support and reducing barriers to assessment, particularly across Autistic people of different genders.

From the article:

Experiencing more barriers to diagnosis was associated with lower overall diagnostic satisfaction (Lewis, 2017), with barriers differing across diagnostic timing and gender. Although total barrier scores did not differ across diagnostic timing, those diagnosed in adulthood reported higher levels of barriers regarding cost and lack of health insurance compared to those diagnosed in childhood. Financial barriers were more commonly reported by individuals diagnosed in adulthood, aligning with prior research identifying cost as a key obstacle to autism assessment for adults (de Broize et al., 2022). These barriers may include difficulties finding an in-network provider who conducts adult assessments, travel expenses, and indirect costs such as lost wages or childcare. However, research suggests these concerns are also widespread among caregivers of Autistic children (Smith-Young et al., 2025). Thus, cost may be a structural barrier in autism diagnostics throughout the lifespan, necessitating policy changes like insurance reform, expanded public services, and financial assistance for adults and families seeking evaluations. Child-diagnosed individuals reported higher levels of barriers about understanding what the provider is saying, and not seeing themselves in the current idea of what autism is. There may be fewer resources for disclosing autism diagnosis to youth (Smith et al., 2018), although recent research has sought to address this gap in partnership with Autistic people (Almog et al., 2024).

 

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.

Data on Autism and Public Insurance

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

Center for Medicaid and CHIP Services, Division of Quality and Health Outcomes. 2024 Medicaid and CHIP Beneficiaries at a Glance: Autism. Centers for Medicare & Medicaid Services. Baltimore, MD. Released July 2024.

Approximately 5 percent of children ages 3 to 17 with public insurance have Autism or Autism Spectrum Disorder (ASD), as reported by parents. The Centers for Medicare & Medicaid Services (CMS) provides states with several options under the federal Medicaid program for providing services to eligible individuals with Autism or ASD, including access to therapy services, preventive services and other licensed practitioner services. The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit requires that all children enrolled in Medicaid, and at state option children enrolled in the Children’s Health Insurance Program (CHIP), receive screenings designed to identify health and developmental issues, including ASD, as early as possible. EPSDT also requires that Medicaid programs provide medically necessary diagnostic and treatment services to covered children. 

 Key Findings • Children with public coverage were reported to have significantly higher rates of Autism or ASD than children with private or no current coverage. • Half of children with public coverage who were reported to have Autism or ASD were diagnosed by age 4.

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.

Autism CARES Reauthorization

 In The Politics of Autism, I discuss the congressional role in the issue.

Anne Roux at the Policy Impact Project of the AJ Drexel Autism Institute:

The federal Autism CARES Act, which has existed for the past 17 years, is due for renewal by September 30, 2024. This law authorizes funding and guidance for autism surveillance, training, and research programs. Before these programs began in the early 2000s, there was little to no policy that directly addressed autistic people’s needs. Thanks to the establishment of the CDC’s Autism Developmental Disabilities Monitoring (ADDM) program, research and policy activities have grown exponentially, as ADDM quantified the dramatic increase in autism prevalence – now 1 in 36 children.

Findings from scholarly activity, and the aging of the earlier cohorts of autistic youth, have generated new thoughts regarding the focus of Autism CARES Act investments. In recent months, leading autism advocacy organizations have issued statements and provided testimony with recommendations for updates to the Autism CARES Act.*

...

Some proposals also call for restructuring how recommendations for autism research funding are made and how autism policy is coordinated.

Our own services research at the Policy and Analytics Center receives funding through the Autism CARES Act. This funding is critical because services research, which focuses on services that are needed and used by autistic people, has always been allocated less than 10% of autism research funding. This means there is limited research funding focused on improving people’s functioning and quality of life. We have used this funding to advance understanding of the needs of autistic transition-age youth, the needs of autistic individuals who have been historically under-represented in research, and physical health issues common among autistic people. This funding also partly supports publication of the National Autism Indicators Reports which advise decisionmakers and advocates on how autistic individuals and their families are faring. As such, we are uniquely positioned to speak to how the Autism CARES Act could better address the needs of autistic transition-age youth and adults.

Our recommendations:

We concur with the need for increased services research and policy initiatives focusing on:

• autism care, particularly in the areas of adult diagnosis, which is often prohibitively expensive yet required for program eligibility; mental health; and delivery of physical health services in ways that are appropriate for the sensory and cognitive needs of autistic individuals
• the communication needs of non-speaking individuals
• daily life challenges of autistic adults, including accommodations for sensory needs
• an emerging crisis stemming from limited systems-level capacity to support autistic individuals as they age, particularly those who have aging care partners

We concur with the need for research to improve the system of care for autistic individuals who require round-the-clock support (both long-term and intermittent, depending on people’s needs); and we add the need for research to also improve the system of care for autistic individuals who do not meet eligibility requirement for care given absence of a discrete intellectual disability (but who often have severe and persistent mental illness that interferes with functioning).

We further recommend research and policy focusing on:

• Effective supports (e.g., financial, respite, training, emotional) for families who are the primary providers of care for autistic people who cannot live on their own, or who cannot find or fund accessible and safe living arrangements in a place of their own. These needs are exacerbated by long wait lists for Medicaid home- and community-based services, a significant shortage of direct support workers, and difficulty finding affordable housing and funding for rental assistance.
• Understanding of capacity and efficacy of public health insurance mechanisms which are the primary funding source for care of autistic individuals, including investigation of the large numbers of young autistic persons receiving dual Medicaid-Medicare benefits.
• Cross-system capacity to deliver services and supports in the areas of employment, housing, and planning for the transition into adulthood.

*We reviewed recommendations from the Autism Society of America, the Association of University Centers on Disability, Autism Speaks, and the Autism Science Foundation

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Neighborhood Disadvantage and Autism Diagnosis

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

Xin Yu and colleagues have a report at JAMA Psychiatry titled "Neighborhood Disadvantage and Autism Spectrum Disorder in a Population With Health Insurance."

Key Points

Question Is neighborhood disadvantage associated with a higher likelihood of the diagnosis of autism spectrum disorder (ASD) in a population with health insurance?

Findings In a cohort study that included 318 372 children with health insurance, neighborhood disadvantage at birth was associated with a higher likelihood of ASD diagnoses, independent of maternal education.

Meaning Providing resources for early intervention and family support in communities with a higher likelihood of ASD is important, while maintaining investment for universal screening.

Abstract

Importance Family socioeconomic status has been associated with autism spectrum disorder (ASD) diagnoses. Less is known regarding the role of neighborhood disadvantage in the United States, particularly when children have similar access to health insurance.

Objective To evaluate the association between neighborhood disadvantage and the diagnosis of ASD and potential effect modification by maternal and child demographic characteristics.

Design, Setting, and Participants This cohort study examined a retrospective birth cohort from Kaiser Permanente Southern California (KPSC), an integrated health care system. Children born in 2001 to 2014 at KPSC were followed up through KPSC membership records. Electronic medical records were used to obtain an ASD diagnosis up to December 31, 2019, or the last follow-up. Data were analyzed from February 2022 to September 2023.

Exposure Socioeconomic disadvantage at the neighborhood level, an index derived from 7 US census tract characteristics using principal component analysis.

Main Outcomes and Measures Clinical ASD diagnosis based on electronic medical records. Associations between neighborhood disadvantage and ASD diagnosis were determined by hazard ratios (HRs) from Cox regression models adjusted for birth year, child sex, maternal age at delivery, parity, severe prepregnancy health conditions, maternal race and ethnicity, and maternal education. Effect modification by maternal race and ethnicity, maternal education, and child sex was assessed.

Results Among 318 372 mothers with singleton deliveries during the study period, 6357 children had ASD diagnoses during follow-up; their median age at diagnosis was 3.53 years (IQR, 2.57-5.34 years). Neighborhood disadvantage was associated with a higher likelihood of ASD diagnosis (HR, 1.07; 95% CI, 1.02-1.11, per IQR = 2.70 increase). Children of mothers from minoritized racial and ethnic groups (African American or Black, Asian or Pacific Islander, Hispanic or Latinx groups) had increased likelihood of ASD diagnosis compared with children of White mothers. There was an interaction between maternal race and ethnicity and neighborhood disadvantage (difference in log-likelihood = 21.88; P < .001 for interaction under χ24); neighborhood disadvantage was only associated with ASD among children of White mothers (HR, 1.17; 95% CI, 1.09-1.26, per IQR = 2.00 increase). Maternal education and child sex did not significantly modify the neighborhood-ASD association.

Conclusions and Relevance In this study, children residing in more disadvantaged neighborhoods at birth had higher likelihood of ASD diagnosis among a population with health insurance. Future research is warranted to investigate the mechanisms behind the neighborhood-related disparities in ASD diagnosis, alongside efforts to provide resources for early intervention and family support in communities with a higher likelihood of ASD.

Pennsylvania Governor Acts on Insurance

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

 A release from Governor Josh Shapiro:

Today, Governor Josh Shapiro and Pennsylvania Insurance Department (PID) Commissioner Michael Humphreys announced that starting on January 1, 2024, the Shapiro Administration will require all commercial insurers to meet their obligations under Pennsylvania law to provide coverage for autism benefits.

The PID published a Notice in the Pennsylvania Bulletin on November 4, 2023 announcing that by no later than January 1, 2024, PID will require insurers offering commercial health insurance policies that include coverage for autism services to handle claims for those services in a manner that complies with the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) and Pennsylvania’s mental health parity requirements.
...

The Shapiro Administration is working to make mental health parity a true reality in Pennsylvania – and part of making this a reality includes requiring that commercial insurers comply with all mental health parity laws to cover autism services fairly and consistently. With this action, the Shapiro Administration will require those insurers to fully comply with parity requirements in administering autism coverage, which means recognizing that autism services are mental health benefits.

Some commercial insurers have historically categorized autism services as a physical health benefit while other insurers categorize all services for autism as mental health benefits. Most of the major health insurers offering comprehensive health insurance in Pennsylvania already treat autism as a mental health condition, subject to parity requirements. PID’s Notice directs the remaining insurers to do the same.

In his first budget address, Governor Shapiro called for stronger mental health parity and directed Commissioner Humphreys and the PID to hold insurers accountable to ensure that mental health benefits are covered fairly. As a result, PID announced that it has strengthened its review of mental health and substance use disorder coverage in 2024 health plans and will enhance its compliance review of mental health and substance use disorder parity requirements to prevent potential violations before they have a chance to harm Pennsylvania consumers.

...

Categorizing autism as a mental health benefit will make a positive impact on the approximately 55,000 Pennsylvanians with autism by requiring health insurers to adjust their insurance policy form language and claims handling processes to provide Pennsylvanians with autism the protections afforded by the mental health parity provisions. As a result, health insurers may not: charge higher copays or deductibles for autism services than for physical health services, cover fewer autism service visits than they would for other health conditions, impose an annual limit for autism services, as well as other safeguards afforded by state and federal parity laws.

“Parity between coverage for autism-related care and other services has long been a goal of the disability community,” said Rep. Jessica Benham. “I am grateful to Governor Shapiro and his Administration for prioritizing this change, which is a step in the right direction toward ensuring greater access to care for individuals with developmental disabilities.”

Drexel University’s A.J. Drexel Autism Institute is a partner of the Commonwealth’s ASERT (Autism Services, Education, Resources & Training) Collaborative, which is funded by the Pennsylvania Department of Human Services’ Bureau of Supports for Autism and Special Populations. The mission of the ASERT Collaborative is to innovate, collaborate, and lead to improve access to quality services, data, and information; to provide support, training and education in best practices; and to facilitate the connection between individuals with autism, developmental disabilities, and special populations, families and key stakeholders at local, state, and national levels.

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Eagles Autism Foundation Executive Director Ryan Hammond joined the Shapiro Administration and the A.J. Drexel Autism Institute for the announcement. The Eagles Autism Foundation helps to fund innovative research, drive scientific breakthroughs, and provide critical resources to create a major shift from awareness to action in the autism community.

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PID believes that treating autism as a mental health condition is consistent with the Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria, which was in effect at the time of enactment of Act 62 of 2008, state and federal MHPAEA laws, as well as generally recognized independent standards of current medical practice, including both the current edition of the DSM and the current edition of the International Classification of Diseases, as recognized in the federal mental health parity regulatory definition of “mental health benefit.” The DSM is the authoritative source under Pennsylvania’s autism law, Act 62.

Pennsylvania law requires coverage of the diagnostic assessment and treatment of autism spectrum disorders by certain group insurance policies or contracts. Through the Affordable Care Act, that law also applies to individual and small group policies. The Department has monitored the coverage of autism services, including whether they have been covered as a mental health condition subject to the federal MHPAEA law that was adopted into state law in 2010.

For support with insurers, Pennsylvanians can contact PID’s Consumer Services Bureau online or at 1-877-881-6388. For more information on the Shapiro Administration’s commitment to supporting Pennsylvanians with autism, visit pa.gov/autism.

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Prevalence and State-Level Autism Resources

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

 Johanna S. Kester and colleagues have an article in The Journal of Disability Policy Studies titled "Variance in Autism Prevalence: Links With State-Level Autism Resources."  Abstract:

The prevalence of autism spectrum disorder (ASD) has varied over time and across the United States. This variability is likely related to external factors, such as regional differences in ASD-related resources. The study reported on here examined the links between ASD prevalence as measured by Individuals with Disabilities Education Act (IDEA) Part B child count data and four aspects of state infrastructure (health care and insurance policies, clinical resources, research infrastructure, and awareness-raising individuals/organizations). This study also investigated whether these constructs varied by geographical region. The data for this study were abstracted from publicly available databases. Information on state infrastructure was gathered from high-quality reports, resource guides, certificant registries, and databases. More comprehensive ASD-relevant insurance and health care policies, more clinical resources, and greater research infrastructure were associated with higher ASD state prevalence rates as measured by the IDEA Part B child count data. Prevalence of ASD was higher in eastern U.S. states compared with southern U.S. states, but state-level ASD resources did not statistically significantly differ across geographic regions. Implications for research, practice, and policy are discussed.

The Health of Parent Caregivers

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Hamre, Kristin; Nord, Derek; and Andresen, John (2023) "Caregiver health: Having a child with ASD and the impact of child health insurance status," Developmental Disabilities Network Journal: Vol. 3: Iss. 2, Article 5. Available at: https://digitalcommons.usu.edu/ddnj/vol3/iss2/5 

The abstract

This study aims to understand the health outcomes of parents with children with autism spectrum disorder (ASD) and the interactive effect of child health insurance status. The

study utilized 2014-2018 pooled National Health Interview Survey data to construct weighted national estimates and assess main and interaction effect logistic regression models. Findings show parents of children with ASD experienced significantly poorer health compared to parents of children without autism. Insurance status was found to significantly interact with child ASD status. Compared to parents of children without ASD who used private insurance, parents who had a child with ASD who used private insurance, public insurance, or were uninsured were found to have 1.5-, 3.2-, and 2.1-times higher odds of poorer health, respectively. Future research and implications on policy and practice are discussed.

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.

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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.

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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.

   

Many People with Disabilities Lack Long-Term Care Plans

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Sam Whitehead at Salon:

Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.

Families, researchers, government officials, and advocates worry that the lack of planning — combined with a social safety net that's full of holes — has set the stage for a crisis in which people with disabilities can no longer live independently in their communities. If that happens, they could end up stuck in nursing homes or state-run institutions.

"There's just potential for a tremendous human toll on individuals if we don't solve this problem," said Peter Berns, CEO of the Arc of the United States, a national disability-rights organization.

About one-quarter of adults in the U.S. live with a disability, according to the Centers for Disease Control and Prevention. Nearly three-quarters of Americans with disabilities live with a family caregiver, and about one-quarter of those caregivers are 60 or older, according to the Center on Developmental Disabilities at the University of Kansas.

But only about half of families that care for a loved one with disabilities have made plans for the future, and an even smaller portion have revisited those plans to ensure they're up to date, said Meghan Burke, an associate professor of special education at the University of Illinois in Urbana-Champaign.

"Engaging in it once is good, right? But you can't only engage in it once," she said. "It's a living document, because things change, people change, circumstances change."

Burke's research has found several barriers to planning for the future: financial constraints, reluctance to have hard conversations, trouble understanding government services. Creating plans for people with disabilities also is a complex process, with many questions for families to answer: What are their relatives' health needs? What activities do they enjoy? What are their wishes? Where will they live?

ABA and Private Equity

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 investments.

Tara Bannow at STAT:

ABA has long been viewed as the gold standard for kids with autism, so much so that every state mandates insurance coverage. For some families, it is the only option that insurance will cover at all.

But like other pockets of the health care industry, this one has been transformed over the past decade by a flood of investments from private equity firms, drawn by the promise of insurance reimbursement and the rising rate of autism in children across the U.S., now estimated at 1 in 44 kids.

Families and clinicians who once believed fully in the promise of ABA say the financial investors’ fixation on profit has degraded the quality of services kids receive, turning it into the equivalent of fast food therapy. They’ve grown disillusioned with the industry, they told STAT. Some are now questioning whether the therapy is helpful at all, or even harmful, especially after a recent Fortune article detailed an allegation of physical abuse at one chain.

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But several people working in the industry say that private equity, in an effort to save money on time-intensive assessments, often uses “cookie cutter” treatment plans that are at times simply copy-pasted from one client to the next, which they said runs counter to how the therapy is intended to work.

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One board-certified behavior analyst — the master’s-level clinicians who supervise ABA technicians — said she was shocked when she started working at Autism Learning Partners in Texas. It was very different from her experience running a small, independent ABA firm there that shut down during the pandemic. She said she felt like a “billing machine, trying to make as much money for private equity as possible.”

Unanticipated Consequences: Insurance, Private Equity, and ABA

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 investments.

The law of unanticipated consequences is at work.

Erica Fry at Fortune:.

[State-mandated nsurance coverage] has revolutionized access to autism services in America, making early intervention affordable for families. The shift, reflected in a recent CDC-led analysis, is striking: Per-child spending by employer-sponsored health insurance plans on young children with ASD increased 51% between 2011 and 2017 (over the same period, spending increased just 8% for kids with no ASD diagnosis). Annual per-child spending on intensive behavioral therapy, i.e. ABA, increased 376% in that period, from $1,746 per child to $8,317 per child; for 14.4% of kids with ASD, spending on that therapy in 2017 exceeded $20,000.bers suggest, insurance reform turned ABA into a big business. The mandates unleashed a gold rush, with large investors working to consolidate the fragmented provider landscape and build up regional platform companies specializing in the expensive, time-consuming therapy. “It’s like vultures now,” says Michi Medley, an Oklahoma-based family advocate and autism professional. “All these companies are coming in, and there’s so many of them, families don’t know who’s who.”

Between 2012 and 2021, the Braff Group, a health care M&A Advisory firm, identified 223 deals done in this sector. Nearly 90% of transactions over the past five years have involved private equity, according to the firm’s proprietary analysis; what Braff calls the most “frenzied” period, from 2017 to 2019, was characterized by PE firms buying up ABA providers at 10 to 15 times their annual profits: Big names like Blackstone, KKR, TPG, and Cerberus have all made investments in the space. One of the Braff Group publications compared investor enthusiasm for autism services to that of “fan boys to the latest Star Wars release.”

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Lorri Unumb, the parent advocate who now serves as CEO of the Council of Autism Service Providers (CASP), remembers being dumbfounded when an industry investor boasted that his company hired a supervising therapist for every 40-50 patients (10-15 is the industry standard). Having been so involved in the advocacy that created the industry’s funding stream, Unumb now feels responsible to ensure quality in the industry. “These kids don’t get a do over,” she says. “You can’t just put a shoddy program out there and waste these children’s most important window to change the trajectory of their lives.”

Another urgent question is whether the autism-therapy workforce is trained and equipped to deliver effective care. The ABA industry heavily relies on two categories of workers: Board Certified Behavior Analysts (BCBAs)—the graduate level professionals who design and oversee a child’s ABA program—and Registered Behavior Technicians (RBTs), the industry workhorses who implement the therapy and work with autistic children many hours a day. RBTs, who are sometimes called ABA therapists, get 40 hours of training for the job, and are supposed to be supervised for 5% of their hours.

In general, the workforce is very young and inexperienced. As of July 2022, there were 57,000 BCBAs in the country, up from 20,000 in 2015, along with 120,000 RBTs, all of whom have been certified since 2014 when a professional certification program was created.

The varied readiness and competence of this workforce worries Erick Dubuque, director of the Autism Commission on Quality, a non-profit accreditation body for organizations offering ABA services. “We have a real serious issue with our training programs,” he told me, explaining that many programs get away with offering the “bare minimum,” despite the vulnerability of the population workers will be serving, because of high demand in the field. In a 2020 study, Dubuque and colleagues identified more than 20,000 additional providers that claim a BCBA credential but don’t actually have one. Individuals who work in the field and spoke with Fortune shared concerns about feeling ill-equipped for the job, which sometimes involves managing difficult situations where they might be kicked, hit, or bitten by a combative child. Others commented on a lack of professionalism among their colleagues, sharing stories in which therapists made fun of their clients’ autistic behaviors.