Aging Out of EPSDT – Part VI: HCBS’ Collapse

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 folks 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’t 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 doesn’t sound dire at first, until you realize that waiting lists only move when someone 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 (i.e. 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’t afford the rate of increase. Because they don’t 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.

Aging Out of EPSDT – Part II: Losing Medicaid

One of the primary questions for any disabled youth that is turning 19 (21 in some states) is “Will I still be eligible for Medicaid when I age out of the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program?” The answer to that question depends largely on whether or not the state you live in has accepted the Medicaid Expansion that came along with the Affordable Care Act.

If Your State Accepted the Medicaid Expansion

Children turning adult in states that took the Medicaid Expansion (32 out of the 51 counting the District of Columbia) continue to receive the same coverage they did before provided their individual income remains 138% of the Federal Poverty Level or lower. Furthermore, newly-adult folks who were ineligible for Medicaid due to their family’s income now become eligible as long as their income remains low (as above.)

These extended forms of coverage end at age 26, at which point many will be right back in this same hellish scenario, only slightly older — the exception is those adults with disabilities who remain legal dependents of their parents; they are covered for as long as their parents are employed. Again, the transition will still occur, but it is delayed until their parents retire. Furthermore, see the next post for reasons why you might lose the coverage you need even if you retain Medicaid coverage in the broad sense.

If Your State Declined the Medicaid Expansion

Children becoming adults in the remaining 19 states (Alabama, Florida, Georgia, Idaho, Kansas, Maine, Mississippi, Missouri, Nebraska, North Carolina, Oklahoma, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, Wisconsin, and Wyoming) have a very different struggle ahead of them.

For them, there is exactly one pathway to Medicaid eligibility: they must qualify as low-income (75% or less of the Federal poverty level, roughly $7250/year in 2015), and they must be receiving Supplemental Security Income (SSI, a.k.a. ‘disability’ benefits). While it’s trivial for many young adults with disabilities to meet the income requirements, it’s startling how many of them cannot qualify for SSI as adults — about 3 out of 4 lose their Medicaid access due to SSI’s strict disability standards.

That means that every year, thousands of young adults with severe medical conditions that are often disabling — cystic fibrosis, diabetes, severe asthma, HIV, and even cancer! — and who easily meet the income requirements are denied Medicaid and SSI in the same stroke of a pen.

Different Standards for Adults and Children

This is because the Social Security Administration (the government agency responsible for SSI benefits) applies a much more stringent set of criteria to adults than they do children. Of course, they also issue a re-determination on issues of disability whenever a covered person turns 18, at which point an estimated 30% of all enrolled children lose their SSI benefits, which means they lose Medicaid coverage as well.

More than half of those who lose SSI and Medicaid simultaneously end up completely without any form of medical coverage. This is due to the fact that the ACA was written anticipating a mandatory Medicaid Expansion (which the Supreme Court ruled unconstitutional and made optional). The ACA’s subsidies of health insurance were specifically written to leave out people who made less than 100% of the Federal Poverty Level on the assumption they would be ‘caught’ by the Medicaid Expansion. When some states declined that program, they forced thousands of Americans into a situation where there is no way they can afford medical care, no matter how disabled they are.