In the previous 7 posts, we've looked at 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 that 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 that 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 intimate 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 awful.

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 hard the easiest thing to do – but it might just be the best.