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Wednesday, June 5, 2019

The Cliffs of Autism

In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
Medicaid and private insurance have their own cliffs

Joseph Lee, the brother of an autistic person write at The Globe Post about a Medicaid cliff:
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.
...
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..
Blythe Bernhard at Disability Scoop:
While nearly every state requires insurance companies to cover autism therapies, most cut off mandatory coverage beyond childhood.
Age caps for people with autism are arbitrary since “they don’t suddenly become cured at age 18 or age 21,” said Lorri Unumb, CEO of the Council of Autism Service Providers.
This year, however, several state legislatures including New Mexico, New York, Utah and Virginia removed age restrictions on insurance coverage. About a dozen states now require coverage regardless of age.