Aging Out of EPSDT – Part VIII: Strategies

In the previous 7 posts, we’ve looked in detail at what exactly is wrong with the system that forces children with disabilities covered by Medicaid’s Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program to become adults with disabilities covered by… nothing at all. Now, it’s time to look at how those same families can find some way to cope with the realities of the broken system they work inside of.

Become Your Adult Child’s Home-Based Care Provider

Some states have implemented programs that allow a parent or sibling to get money from Medicaid to provide health care for their loved one with special needs. The programs are called “Cash and Counseling” or “Self-Directed Care” depending on the state. They’re available in Alabama, Arkansas, Florida, Illinois, Iowa, Kentucky, Michigan, Minnesota, New Jersey, New Mexico, Pennsylvania, Rhode Island, Vermont, Washington, and West Virginia.

In short, your Medicare-eligible loved one must apply for the use of the program, and the state will assess them to determine how many hours of in-home care they need each week to function. They use the “fair and customary” rate paid to in-home care workers in your geographical area, multiply it by the assessed number of hours they believe your loved one will need, and give them a budget of that amount to work with. They may choose to pay anyone (in some states, you must pass a nursing class), and they may choose to pay any amount at or above the state’s minimum wage. (Note that this gives them the freedom to stop paying you and pay a professional for a period of time if you need a break, which is an enormous benefit to the family caretakers of the world.)

Move to a State with Better Medicaid Coverage

If you live in one of the 19 states that have not yet accepted Obamacare’s Medicaid expansion (Alabama, Florida, Georgia, Idaho, Kansas, Maine, Mississippi, Missouri, Nebraska, North Carolina, Oklahoma, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, Wisconsin, or Wyoming), it may be difficult to accept, but moving to one of the remaining 31 states (or the District of Columbia) might actually be in your best benefit. This can be a tough call, naturally — it’s dependent on a lot of factors, not the least of which is finding housing and employment — but if you can make the move, the effects on your disabled loved one can be enormous.

If you do attempt to go this route, there are a few things you will need to do:

1. Make sure that the Medicaid programs available in your target state will actually cover your loved one (see Part III of this series).
2. Check the income and resource limits and ensure you will still qualify. (Some states offer a spend-down for resource limits; others do not.)
3. Move.
4. Declare your new home state.
5. Apply for Medicaid in your new home state.
6. Shut down your Medicaid in your former state.

It’s hardly the easiest thing to do — but it might just be the best.

Aging Out of EPSDT – Part IX: More Strategies

In the last post, we talked about how families with disabled children aging out of the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program in a non-Medicare-expanded state might deal with the likely failure of the system to provide for their loved one’s health care. We’re doing the same thing here, but looking at a handful of smaller programs.

Military Benefits

If you are a veteran and the parent of a disabled adult child, you can ask the military to designate your child an Incapacitated Dependent, which will qualify them for limited TRICARE benefits. Like most such benefits, those offered by SSI and Medicare are more comprehensive, but should they not qualify, TRICARE can at least contribute something.

Start a Charity

There are a startling number of ways to ask for charitable donations in today’s connected world, from old-school options like putting coin banks on the counters of local stores to social-media-friendly options like GoFundMe. These can be highly successful short-term options, but they tend to not last over an extended period of time. Also, in most states, the only wise way to deal with the proceeds of such a charity is by setting up a Special Needs Trust — any other disbursement might end up counting as income for the person with special needs, and thus quite accidentally get them kicked off of Medicaid or SSI. Ask a lawyer before you go this route.

Apply for a Grant

Not that many grants exist in the United States for families — most of them are by organizations, for organizations — but a few do. The list available at JoyfulJourneyMom.com is a good place to start for nationwide resources; for more local opportunities, inquire at your Area Agency on Aging. Finally, consider looking up resources specific to your loved one’s disability, such as this list for people on the autism spectrum.

Seek a Tax Break

For certain extremely poor families who spend an extraordinary amount taking care of a disabled loved one, the tax break for medical expenses might be worth their while. Essentially, everything you pay for your family’s medical expenses over 10% of your adjusted gross income is deducted from that taxable income. It’s really not much, but for families in such desperate straits that 11% or more of their gross income is going to medical bills, it could literally be a lifesaver.

Leveraging Existing Resources

Many families, while poor in income due to economic circumstances and burdened by staggering amounts of debt, nevertheless have some surprising resources at their disposal. If you know for certain that your disabled loved one is going to be able to get coverage by a certain time, you could consider getting a reverse mortgage and pulling some money out of your home’s equity to help you make it that far.

Bridge Loans

Similarly, several lending institutions (particularly credit unions and other local banks) offer ‘bridge loans’ to families who can show that they have a defined waiting period they need to cover in order to ‘bridge’ successfully onto Medicaid or a similar comprehensive program. These loans will need to be paid back, but they are a tool that shouldn’t be discarded out-of-hand.

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.