Families Fear Reduced Access to Essential Autism Therapy
INDIANAPOLIS — Shaunna Thompson faced a childcare crisis when her daughter Abbie was expelled from daycare due to her “all over the place” behavior. Thompson found an in-home provider but was told that Abbie was “too much” to watch every day. This motivated Thompson to seek assistance for her daughter, who was also missing developmental milestones. Abbie, now 3, was diagnosed with autism spectrum disorder last year. Thompson enrolled her in applied behavior analysis (ABA), a therapy that focuses on improving communicative, social, and motor skills. The therapy had a profound impact on Abbie, who said her first word, “Mom.”
However, Medicaid changes coming in January are causing concern for Thompson and other families who rely on the therapy. Indiana plans to limit the cost and reduce the size of the low-income health care program, potentially limiting access to ABA therapy. The cost of Medicaid reimbursement for ABA has increased due to an increasing number of children seeking services and higher billing amounts from providers. The state intends to implement a universal reimbursement rate for the therapy, but it is lower than what providers previously received on average.
Providers and Centers Fear Closure
The new reimbursement rates worry advocates and centers who fear accepting fewer patients or even closing down, as has happened in other states like Colorado. J.J. Tomash, the leader of a Colorado-based ABA provider called BehaviorSpan, described the situation as a crisis due to insufficient Medicaid reimbursement rates. Indiana Act for Families, a coalition opposing the new rates, stated that the proposed rates are 10% below providers’ operating costs. The coalition argued that the state used outdated data in their comparison to pay rates in other states. Providers are concerned that the new rates will not be enough to sustain their operations and are far below the previous statewide average.
Implications for Patients and Staff
Approximately 6,200 children and young adults received ABA services under Medicaid in 2022. The therapy requires an intensive staff-to-patient ratio of 1-to-1, making it highly staff-demanding. Providers anticipate that the new rates will impact staff pay and benefits, leading to high turnover and inconsistent care for patients. Miles Hodge, owner of Shine Pediatric Therapy in Indianapolis, predicts that his center will have to reduce the number of Medicaid patients they can accept due to the changes. The state plans to review the rates every four years, which Hodge believes does not keep up with inflation and may leave many struggling.
State Justification and National Concerns
The Indiana agency overseeing Medicaid justifies the changes by stating that ABA therapy is the only major service category without a uniform reimbursement rate. The agency claims that the rising costs are unsustainable, with ABA expenditures increasing over 50% each year for the past three years. However, as states across the country roll back pandemic-era Medicaid protections, low reimbursement rates pose a threat to access to crucial services for individuals with disabilities. Jennifer Lav, a senior attorney with the National Health Law Program, warns that lower rates during a time of high inflation can lead to staff turnover and shortages, particularly in rural areas.
Families Value ABA Therapy Despite Criticism
While ABA therapy has its critics, families who have found it helpful struggle to imagine a future without access. Natasha Virgil, whose 6-year-old son Elijah Hill benefits from ABA therapy, emphasizes the importance of giving her child the skills to thrive in the world. The therapy has allowed her family to participate in activities outside their home, significantly improving their quality of life. Chanel McClure, whose 2-year-old son King is nonverbal, also expresses concern about the impending changes. ABA therapy has enabled King to communicate and play with other children, and McClure fears that reduced access to the therapy will hinder his progress.
