Aging Out of EPSDT – Part IV: States of Disarray

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The Early and Periodic Screening, Diagnostic, and Treatment program (EPSDT) forces states to extend Medicaid coverage to low-income children for almost every medical service — but adults are a different story. There are genuinely consequential restrictions on Medicaid benefits offered to adults, as many if not most of the services that enable a person with disabilities to maintain their function within their community have very limited coverage options. These include prescription drugs (Adderall for ADHD), respiratory care (inhalers for severe asthma), and therapeutic services (speech therapy for autism-spectrum disorders), as a few common examples.

While every state offers some degree of these optional services, none of them offer coverage for all of the optional services used by people with disabilities. For example, as of 2012:

• Only 23 states offered private nursing service benefits (used by any person with a disability that prevents them from cleaning themselves),

• Only 26 states fully cover speech, hearing, and language disorders,

• Only 32 states fully cover eyeglasses,

• Only 25 states fully cover psychiatric services, and

• There are still 3 states that offer absolutely no mental health coverage!

Restricted Access

The other side of this horrible coin is that there’s no guarantee a disabled young adult will be able to get coverage even provided the state offers a Medicaid program relevant to their needs. That’s because states are given broad leave to limit the scope, duration, and amount of benefits offered to adults. For example, some states’ prescription drug coverage restricts any given individual to receiving just 3 different prescriptions per month. Any parent of a child with severe ADHD can tell you that 3 prescriptions will just cover someone who needs a daily, a school-time, and a ‘booster’ dose of Concerta to be able to function effectively across the day. Heaven forbid that same child also be diabetic and require insulin!

Similarly, many states that offer therapy services such as occupational, speech, or physical therapies only cover a specific number of sessions each year, which is totally acceptable if you’re someone with an injury they’re trying to recover from. For someone with ongoing special needs for whom the therapy acts as maintenance rather than recovery, who needs a therapy session every week or more for all of the foreseeable future, it’s a complete disaster.

Waivering Support

Finally, many states are attempting to reduce health care burdens by offering less-expensive Home- and Community-Based Services (HCBS), by obtaining a special waiver from Medicaid enabling them to create a location-based program. These HCBS waivers are good in a way, because many states wouldn’t offer some services at all without them — but they’re also very bad, because anyone who can’t qualify under a waiver is put on a waiting list and receives no Medicaid services unless they have a genuine medical emergency.

How Bad Is It Really?

Genuinely bad: one recent study showed that, of the roughly three million Americans who need daily assistance to perform the most basic activities (toileting, eating, getting dressed, etc.), fully one million of them weren’t able to get the assistance they needed regularly. Specifically:

• 80% said they regularly go one or more day each month with no clothes on.

• 30% said they had soiled themselves at least once in the last month because they had no other option.

• 10% said they had gone to bed hungry at least once in the last month because they had receive the help they needed to eat.

You may be thinking of senior citizens at this point, but remember — roughly 10% of those three million people are between the ages of 19 and 35. That means that, in the last month, there are thirty thousand American adults who went to bed hungry because they couldn’t feed themselves, and the programs that got them to age 19 vanished out from under them.

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