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, aka 'disability' benefits). While it's trivial for many young adults with disabilities to meet the income requirements, it's startingling how many of them can not 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 person turned 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 unconventional 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 declared 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.