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.

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Aging Out of EPSDT – Part X: Making Ends Meet

This final article about surviving the transition from having your health care needs met by the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program to having to pay for them out of pocket or with extremely limited coverage gets down to brass tacks. We talked for the last two articles about ways that you could get your medical bills paid through alternative routes — now it’s time to talk about what happens when you have to choose between paying for (as an example) your electric bill… or your insulin.

Catch-22s

When you’re a disabled young adult and the Federal and State programs have all collapsed around you, it can seem as though you’re in a nightmare. If you’ve only managed to scrape together a few hundred dollars, what do you pay first, your rent or the copay for your necessary weekly doctor’s visit? In most places, the answer is that you pay your medical bills, and you look for a charity or some other assistance to pay your costs of living. That’s because there are a lot of different costs for living, and there are both government programs and charitable organizations for each — but there are few that are willing to address the problem of a chronically disabled person’s long-term medical bills.

Where to Start

Two good places to start are Disability.gov’s list of Quick Links for low-income individuals and families, and the Federal government’s Benefit Finder. Between the two of them, you’ll find links to sign up for:

• The Supplemental Nutrition Assistance Program (SNAP a.k.a. Food Stamps)

• Medicare Part D (Prescription Drug benefits)

• The Low Income Home Energy Assistance Program (LIHEAP – pays heating bills)

• Rental assistance opportunities through your local Community Action Council

• And several other services.

Basic Budgeting and Money Management Skills

If your particular set of special needs doesn’t preclude keeping a budget and managing your own money, you’ll find that there are plenty of resources out there to help you learn how to do that independently. There’s an excellent PDF available that acts as a basic workbook on budgeting and money management for people with disabilities; find it here. There are also numerous tools available at mymoney.gov as well.

Getting a Car as a Low-Income Disabled Adult

As long as your budgeting skills (above) allow for it, it is possible (albeit challenging) for a disabled adult with a strong story to acquire a car at no cost on the website FreeCharityCars.org. They give away about a car every month, and they have dozens of people sign up every day, so it’s not an easy thing to do — but if you have the time and energy to tell your story, it might just be very, very worth it.

If not, once again, Disability.gov offers a great list of places that offer assistance in obtaining inexpensive cars.

Buying a Home as a Low-Income Disabled Adult

… might sound like a pipe dream, but there are a surprising number of programs that can help you accomplish this noble goal. The list of disabled-friendly mortgage lenders at Disabled-World.com can give you plenty of information to start from, including a list of both nationwide and state-level lenders.

Life after EPSDT and without Medicaid coverage can be extremely challenging — but the resources are out there, and change is being made, even if in tiny increments, every day.

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