The prevalence of autism diagnoses has increased in recent years as autism awareness has risen. Developmental and behavior deficits are often attributed to autism. Autism is a spectrum. Symptoms vary from slight to severe. States and the federal Medicaid program began to require coverage for autism therapy. Private equity has taken notice and began to invest. As a result, autism clinics – much of the therapy paid by Medicaid – have sprung up all over the country. State expenditures on autism treatment have expanded rapidly. The following is from a New York Times investigation:
Nationwide, Medicaid spending on autism therapy nearly tripled between 2020 and 2024. In some states it grew much faster: Colorado Medicaid now spends more on autism therapy than on all emergency department visits. North Carolina, which spent $121 million in 2022, projects it will spend over $1 billion next year.
The New York Times investigation identified some benefits, but numerous abuses of Medicaid coverage of autism. For parents, autism therapy is tantamount to free daycare. If it could improve behaviors of preschool children that would be a bonus. In many cases, treatment centers employ sales personnel to recruit parents to enroll their kids. The children are diagnosed by in-house psychologists, whose incentives are to boost revenue, or lose their jobs or bonuses.
Treatment in Medicaid-funded autism centers is often excessive. Children are frequently subjected to grueling hours of instruction, likely benefiting the treatment center’s bottom line more than the child. Parents are sometimes told they could not enroll their children in treatment unless they agreed to 25, 35 or even 40 hours a week. That is far more than young preschool kids can absorb. Parents are even sometimes advised to hold kids out of kindergarten and primary school for several years to remain in treatment, setting the kids back academically.
Finally, Behavioral counselors (sometimes called technicians) complain of their kids being arbitrarily subject to increases in therapy sessions with little justification. In other cases, technicians complained about the curriculum being too sparce and being given too few tasks to train to fill the allotted time, thus having to repeat tasks the child already mastered.
ABA therapy is based mostly on one 1980s study that only enrolled 38 students, who were not randomly assigned to treatment. This study found intensive one-on-one teaching, called applied behavior analysis (ABA) could improve autism symptoms. ABA involves getting small rewards for acting correctly and small punishments for negative behavior. The study found ABA therapy could train children to behave normally and teach children techniques to more easily adjust to society. The study supposedly found that 40 hours a week of training worked better than 10 hours per week. The problem is that the curriculum has not been fully validated, with knowledge of which therapy is beneficial and which is ineffective and potentially harmful. Forty hours versus ten is not useful information without knowing the type of training, the age of the subjects and whether benefits persist. More from NYT:
Recent studies of A.B.A. therapy have mixed findings. One major evidence review in 2018 found “weak evidence” that it reduces autism symptoms. Countries have split on whether the service is worth paying for. Some Canadian provinces cover the therapy. Britain does not.
Autism therapy does not come cheap. While North Carolina Medicaid pays about $70 per hour for therapy, Nebraska paid double that until the state reduced the amount. Critics contend the primary goal of autism treatment centers is revenue, rather than treatment.
Some companies seemingly game the system to maximize revenue but still stay within legal limits. Others do not bother with the annoying details of recruiting health care professionals, hiring staff, enrolling children, and providing therapy. They just bill Medicaid millions for care never provided. This happens because states have done little to police their programs. More from NYT:
Autism clinics operate with little state oversight. Unlike day care facilities, they are not subject to regular inspections despite young children spending long hours there.
The high payment rates and limited oversight may also contribute to more overt types of fraud. On Thursday, prosecutors charged two Minnesota autism clinic operators with fraudulently billing the government $46.6 million for services never delivered or given to children with fake diagnoses.
The outcome of mandated autism coverage could have been predicted by any economist. Furthermore, pilot programs should have tested therapy, and parameters established before high priced preschools were allowed to proliferate. Once started, it is difficult both politically and legally to put on the brakes.
Read more at NYT: Short Naps, Long Hours: How Autism Clinics Squeeze Medicaid Dollars Out of Preschoolers
This makes me wonder whether there was some financial reason for officially retiring the “Aspergers syndrome” terminology and removing any differentiation from autism in general.