Medicaid is the nation’s primary health insurance program for people with disabilities, but it is so much more than health care. For individuals with disabilities and their families, Medicaid also funds vital supports to keep them in their communities.

People with disabilities who are eligible for Medicaid often live in or near poverty. They rely on Medicaid for stability, support, and services. However, Medicaid can be extremely challenging to navigate—requiring people to spend significant time and effort learning how the system works, how to complete all of the necessary paperwork, and waiting for appointments to access critical care and services. If people are unable to navigate these challenges, they risk losing essential care, services, and stability.

In 2022, The Arc and its chapters asked families nationwide about their challenges navigating Medicaid.

Terri, who has a child with Down syndrome, notes that complications with the Medicaid application process have meant her family has “missed out on eight years of having co-pays covered, on financial support for the diapers her son wore until he was seven, and on assistive devices to help him walk and talk. Despite being well-educated, I found the paperwork really daunting,” says Terri. “The cynic in me wondered if it was complicated by design, to frustrate people from applying.”

Frances, a self-advocate from Colorado, has received Medicaid for over 40 years. Still, she encounters many difficulties in navigating the Medicaid system. According to Frances, “It is frustrating because I do not know what my co-pay is on a doctor visit and I will receive a bill that I do not understand. When I call to ask for more information, it is often hard to talk to a person and get a call back when I leave a message.”

Many people on Medicaid are required to reapply or prove they are still eligible for services on a yearly or even semi-annual basis. For Frances, this is the biggest barrier. “I have to work with the Department of Human Services and submit proof of housing and income,” she says. “But because they are not meeting with people in person, I have to fax these documents, and it is very difficult to get a hold of someone at the office to do this. I wish I could submit this paperwork in person.”

Monique, a disability professional from California, recounts the difficulties of trying to get a specialized wheelchair through the Medicaid system for an individual with Parkinson’s disease. Monique notes that it took “multiple months to get the process started.” This long wait time meant the person with a disability had to use a rented wheelchair “which was not adequate for [him] and his staff.” By the time the chair arrived over a year later, the man was already in a nursing home. “[He] died a week later,” says Monique. “[He] never even sat in his wheelchair or was able to see it.”

In the coming months, navigating Medicaid will likely get even more complicated. There have been special rules in place to protect people from losing Medicaid during the COVID-19 pandemic. In April 2023, these rules will end, and states will likely begin kicking millions of people off Medicaid.

Accessing Medicaid should be made easier, not harder. The Arc will continue to advocate to strengthen and protect Medicaid for people with disabilities and their families so that everyone can navigate it and access this vital support.