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

Become Your Adult Child’s Home Care Provider

Some states have programs that allow a parent or sibling to get money from Medicaid to provide medical care for their loved one with special needs. The programs are called “Cash and Counseling” or “Self-Directed Care” depending on the state. They are 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 to use the program, and the state will evaluate it to determine how many hours of home care it needs each week to function. They use the “fair and customary” rate paid to homecare workers in their geographic area, multiply it by the estimated number of hours they think their loved one will need, and give them a budget for that amount to work. They can choose to pay anyone (in some states, you must pass a nursing class) and they can choose to pay any amount equal to or greater than the state 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 a huge benefit to family caregivers around the world.)

Moving to a state with better Medicaid coverage

If you live in one of the 19 states that have not yet accepted Obamacare Medicaid expansion (Alabama, Florida, Georgia, Idaho, Kansas, Maine, Mississippi, Missouri, Nebraska, North Carolina, Oklahoma, South Carolina, Dakota del South, Tennessee, Texas, Utah, Virginia, Wisconsin, or Wyoming), it may be hard to accept, but moving to one of the remaining 31 states (or the District of Columbia) might actually be your best benefit. This can be a difficult decision, naturally, it depends on many factors, including the search for housing and employment, but if you can make the move, the effects on your disabled loved one can be enormous.

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

1. Make sure the Medicaid programs available in your destination state actually cover your loved one (see Part III of this series).
2. Check the income and resource limits and make sure you still qualify. (Some states offer a reduction in resource limits; others do not.)
3. Move.
4. Declare your new state of residence.
5. Apply for Medicaid in your new state of residence.
6. Close your Medicaid in your old state.

It’s not the easiest thing to do, but it could be the best.

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