As my autistic sister Esther prepares to begin high school in August, dwindling boxes of medication, growing piles of healthcare bills, and the forgotten faces of once-frequent therapists have been my family’s latest causes of distress.
Over the past fourteen years, we have watched childhood sources of financial and therapeutic support wane substantially for Esther. Facing the expiration of federally mandated support upon her 21st birthday, the question of how we can continue providing the best care for her into adulthood remains alarmingly unresolved.
This crisis of care for families of autistic children has never been more urgent. An estimated half a million young Americans with autism will transition to adulthood over the next decade. Many will find themselves losing access to much-needed therapy and healthcare services they had growing up.
Medicaid’s Age Caps
The crux of this issue is Medicaid’s age caps. Like most families of autistic children, the few therapy sessions we can afford for Esther rely heavily on the Early Periodic Screening, Diagnostic, and Treatment (EPSDT) Medicaid benefit, which entitles children to any services medically necessary to address their health conditions. This entitlement discontinues, however, after the age of 21.
This looming “services cliff” places families of autistic children in the greatest danger; per the Center for Disease Control, it already costs parents $17,000-$21,000 more per year to care for an autistic child than for a child without autism. Facing a future of uncovered healthcare and ever-rising medication, education, and caregiver costs, many parents are forced to discontinue their children’s life-changing therapy regimens past childhood. As their services dwindle, children like my sister face a future of isolation and mental regression, exacerbated by their parents’ old age and the loss of therapy sessions and school social circles.
To Esther and my family, the EPSDT age cap is an insult. It advances an underlying societal stigma that autistic adults are hopelessly unintelligent and incapable. Having access to a comprehensive range of services should be guaranteed for all people with disabilities who are among the most medically fragile and have the most complex needs.
Restricting autistic adults from these services doesn’t just neglect the simple fact that autism is a lifelong developmental disability – more harmfully, it conveys the notion that autistic adults are lost causes that society should stop investing in.
Medicaid and EPSDT Reform
Age caps for health insurance mandates must be removed or counteracted to ensure proper care for these individuals. Despite concerns that such measures are unrealistic, Virginia’s recent expansion of autism insurance mandates to include all ages suggests that guaranteed EPSDT access for all autistic adults in America is a very plausible reality.
Healthcare coverage should be indiscriminate for all people, young or old, disabled or not. More importantly, a society that neglects the disabled is neither humane nor morally upright. As their siblings, parents, friends, and fellow citizens, we carry a human responsibility to cry out for those who are unable to speak for themselves.
Autism CARES Act
The recent Autism CARES Act of 2019 seeks to remedy the drop-off in support for autistic adults. Unlike past legislation, this bipartisan bill directly addresses age-related disparities in autism through “across the lifespan” provisions.
The bill provides adults with opportunities for transition services, including job training, disability-accommodated education, and even independent living coaching. Without congressional action, however, the current Autism CARES Act will expire on September 30 and with it, $260 million of annual funds. As that deadline rapidly approaches, I plead with you to voice your support.
My sister represents a discarded population of Americans with disabilities whose battle against tremendous societal odds grows ever Sisyphean. By demanding laws that provide autistic adults with needed health and supportive services, we empower and equip them for lives of community participation and personal fulfillment. Simultaneously, we combat the stigma of hopelessness and alleviate the burdens of families who have committed their entire lives to fight on their children’s behalf.