Uncertainty about Medicaid changes fuels fear for families of those with disabilities

Medicaid and the Americans with Disabilities Act (ADA) help many Americans with disabilities earn a living, attend school, access transportation and receive the medical support they and their families require.

Now, families of those with disabilities are facing an even more uncertain future than they usually do. Medicaid cuts in the budget bill passed by Congress and signed by the president may result in 17 million Americans losing their health insurance.

The 4.5 million Americans with disabilities who depend on home- and community-based care may have reduced access to the care they need as budgets shrink at Medicaid-funded agencies.

Most changes are being phased in over several years, extending into 2028 and beyond.

Meanwhile, on May 16, the Department of Energy proposed eliminating accessibility requirements for more than 17,000 federally funded buildings, potentially making them inaccessible to citizens and employees with disabilities. This has received very little media attention and public outcry.

Families of loved ones with disabilities — children, siblings and others — are working to ensure they will be able to live as independently and comfortably as possible when they’re no longer around. With these new realities, the future has become more uncertain, and they are afraid, plain and simple. They feel as if the rug was ripped out from under them.

When the stock market crashes, we know it will inevitably come back. We don’t know that about government programs. These cuts may be permanent, or funding may be restored under a future administration. Until there is more clarity, it’s important for families to let go of the elements they can’t control and focus on the ones they can. All they can do is plan around what they know today.

The first step (and this applies to every individual and family) is to know what you spend. If you have to divert funds to build savings, where can you find that money? We have most of our clients complete a cash-flow analysis that accounts for every penny, and they are sometimes surprised at money they are spending that they’re not aware of. Cable. Gym subscriptions. Dining out. Credit card interest. Online purchases. Gifts.

Financial planning should be conservative; for example, don’t count on Social Security benefits to increase as they have in the past. How would you manage if your child’s residential facility closed down and you had to bring them home? You hope that won’t happen, but your plans should accommodate some “what ifs.”

Next, look at the programs that are not under threat. We know there will still be Special Needs Trusts and ABLE (Achieving a Better Life Experience) Accounts, which are tools for financial planning for individuals with disabilities.

While ABLE accounts have annual and overall contribution limits and are generally simpler to set up and manage, Special Needs Trusts have no contribution limits and can hold various asset types. Most importantly, they allow a family to set aside funds for a family member without jeopardizing whatever benefits they might still receive in the future.

Life insurance is another important consideration. Parents of a child with disabilities may need to increase their life insurance in order to make sure they leave a substantial estate.

They also need to think about their own health and ability to work. If they get sick, they will want to avoid using up their own money on care. Long-term care insurance has evolved over the years, and now companies offer hybrid policies that have features of life insurance and long-term care. If your employer offers a group long-term care program, take a close look at it.

Finally, I think that advocacy is something everyone can do. Disability rights activists are in Washington right now, trying to protect their hard-won gains. Becoming politically active, perhaps meeting with federal and state officeholders to tell your story, can also be a good way to quell fear because you’re doing something. Parents of a disabled child may also want to become involved in fundraising for the agencies and organizations that serve them.

Medicaid has been a ticket for access to services needed by those with disabilities.

All through history, people with disabilities have had to fight to get things done, and now they’re fighting to keep what they’ve gained. While the political battle continues, take control of what you can and keep a positive outlook as you look into the future.

• Mary Anne Ehlert specializes in financial planning for families with a disabled family member. She is the founder of Protected Tomorrows in Lincolnshire and is a partner in with Simplicity Group. For more information, contact her at (847) 522-8086.