UnitedHealthcare, the health insurance giant, is under intense scrutiny following revelations of internal cost-cutting measures aimed at limiting coverage for children with autism. Recent reports reveal aggressive tactics to restrict access to the gold standard therapy known as applied behavior analysis (ABA), which is necessary for many young patients on the autism spectrum.
According to internal documents obtained by ProPublica, UnitedHealthcare's subsidiary, Optum, is actively pursuing these measures primarily targeting children enrolled through state-contracted Medicaid programs. These plans provide coverage for the poorest families, including thousands of children diagnosed with autism. The company's decision to tighten controls over therapy access is believed to be driven by rising costs associated with the dramatic increase in autism diagnoses—over the past two decades, rates have soared from 1 in 150 children to 1 in 36.
The company recognizes ABA as the "evidence-based gold standard treatment for those with medically necessary needs,” yet it has unveiled plans to prevent new providers from joining the existing network and terminate contracts with those already providing services. This strategy is compounded by the acknowledgment of nationwide provider shortages, resulting in long waitlists for families seeking necessary treatment.
One of the families impacted by these changes is the Menard family from Louisiana. Sharelle Menard recalls the devastating struggles her son, Benji, faced due to his severe autism. "He would get so frustrated because he couldn’t communicate," she stated, highlighting how ABA therapy helped him finally embrace small words and improve his communication. Unfortunately, the tide has turned as Optum lately denied him the full hours of therapy his clinicians deem necessary, citing inadequate progress over his long-term treatment of six years.
The denial from Optum reads, "Your child still has a lot of difficulty with all autism-related needs. Your child still needs help, but it does not appear..." This has left Benji's future uncertain and brought back concerns of regression. His improvements have been remarkable, but they hang precariously on the insurance decisions being made, as insufficient therapy could trigger negative behavioral outcomes and hinder his learning experience.
Whitney Newton, Benji's behavior analyst at Aspire, condemned the denial, emphasizing, "We know what he needs. It’s our right as the provider to determine..." Newton's sentiments reflect the frustrations voiced widely among clinicians who feel insurance companies are making arbitrary decisions without considering the broader consequences for child development.
The fallout from UnitedHealthcare's cost-cutting plan poses serious questions around legality as well. Advocates like Karen Fessel, who heads the Mental Health and Autism Insurance Project, have characterized the insurer's tactics as "unconscionable and immoral," especially amid the pressing needs of families with children requiring focused interventions. By law, insurers are mandated to cover mental health treatments equally with physical ailments, raising concerns whether UnitedHealthcare is violating federal regulations.
Despite being financially profitable—recording $22 billion net profits last year—the pressure to control costs has led to decisions perceived as prioritizing profits over child welfare. Reports indicate Optum is not only denying therapy requests but also engaging in rigorous reviews of therapy needs, sometimes leading to outright denials of what clinicians argue is medically necessary.
Sharelle Menard expressed fears of losing the progress her son has made, stating, "This motivation and momentum — when you lose it, it’s so hard to get it back." Benji's story exemplifies the struggles countless families face when insurance barriers obstruct access to life-changing therapies.
Legal experts warn about the ramifications of these cost-cutting efforts. The inconsistency of coverage for mental health as opposed to physical health has raised flags among advocates pushing for equitable healthcare access. Deborah Steinberg, a senior health policy attorney, emphasized, "The company may be violating Medicaid regulations..." illustrating the broader legal challenges the insurer could face.
Benji continues to receive treatment, albeit without the assurance of AMA coverage from his insurer. His therapists persistently strive to secure the necessary hours for his growth and stability, pending the outcome of appeals from previous denials. Every six months, they must revisit authorization requests, creating inconsistencies and uncertainties for the therapeutic plan.
Experts suggest the need for early interventions like ABA is more than just about immediate relief. Lori Unumb, Advocate for Autism Services, stated, "If these kids get the intervention they need as children, then there will be tremendous cost savings over..." illustrating long-term benefits both for families and the healthcare system.
Even with the challenges posed by insurance companies, the demand for services remains overwhelming, as evidenced by the burgeoning waitlists for therapy access. McCoy, the founder of Aspire, noted her center currently accommodates over 260 children on the waitlist, showcasing the high demand against dwindling resources.
Benji's story is one of many narratives exposing the alarming trend among insurance providers to tighten coverage for necessary care, leaving families to navigate complex healthcare landscapes fraught with obstacles. While the Menards continue to fight for Benji’s access to therapy, advocates and healthcare professionals are rallying for systemic changes to secure consistent care for all children who need it.
