One of the most-favored ways for states to deal with youths with disabilities that are aging out of the Early and Periodic Screening, Diagnostic, and Treatment program (EPSDT) is to move them into the Home- and Community-Based Services (HCBS) program. The HCBS provides those newly-adult people with disabilities the opportunity to obtain Medicaid waivers that can be used to pay for health care services either at home or in a privately-run community dedicated to their particular kind of disability. It has two major problems: it can not handle the existing caseload, and it's in the middle of getting reformed because it's already too expensive.

Waiting for Health Care

Those much-vaunted HCBS waivers only pay for a certain number of people; Everyone else goes on a waiting list. That does not sound dire at first, until you realize that waiting lists only move when someone is currently receiving HCBS coverage passes away – and most of these spots are being filled with young adults who have decades of life in front of them!

There are currently more than half of a million Americans on such waiting lists, trying to figure out how to make ends meet until their coverage kicks in. In some states, you can get a child with special needs put on the waiting list for adult HCBS services the day they turn 14 … and then still watch them wait for 5 or more years past their 19th birthday until they actually receive the coverage they need, paying for their health care out-of-pocket the whole time.

HCBS 'Frantic Reforms

The HCBS system started gaining popularity in 1995 as a less-expensive alternative to institutional care (ie nursing homes). In that year, HCBS spending was $ 5 million for the entire country. Since then, however, the cost has risen significantly every year, to $ 44 million in 2014. Medicaid's administrators are panicking, because they can not afford the rate of increase. Because they do not want to appear to be attacking the disabled community directly, their strategy of choice has been to attack the privately-run communities that have cropped up around the country to serve the special-needs population.

They've done so by massively broadening the definition of “institutional,” so suddenly thousands of nonprofit communities that served the disabled populace and were paid via the HCBS waiver system are no longer eligible for those waivers. It's not a matter of any given young adult with special needs being unable to qualify for HCBS – it's a matter of the government systematically declaring the 'communities' of the 'community-based services' to be no longer officially 'communities,' but rather 'institutions.' So now, when you age out of EPSDT, even if you qualify for Medicaid, you might be told that the only people allowed to take care of you are your family members.

According to the Center for Medicare Services, the Medicare / Medicaid system will begin to consume 100% of Federal revenue by 2050 if nothing changes, so these restrictions are absolutely necessary. But there's another option that makes far more fiscal sense, if only people would open their eyes to it – we'll discuss that in the next post.