By Michael Atkins, The Arc of the United States

Medicaid is the nation’s primary health insurance for people with disabilities, covering over ten million people with disabilities under the age of 65. For many people with intellectual and developmental disabilities (IDD), Medicaid provides even more than insurance – it’s a lifeline. Millions of people with disabilities rely on Medicaid’s home and community-based services (HCBS) to live independently in their communities. This includes daily tasks such as getting around and being part of the community, on-the-job support, dressing, bathing, taking medication, and much more.

Unfortunately, many states have years-long waiting lists for HCBS or are only able to provide limited support to limited people. There are currently over 650,000 people waiting to receive Medicaid-funded HCBS. For those lucky enough to have HCBS, finding direct care workers to fulfill those hours is nearly impossible – or at constant risk – due to unlivable wages. To make matters worse, Medicaid continuous coverage protections that were created to mitigate COVID-19 impacts are set to unwind, and millions of people may lose their coverage altogether.

A number of news reports have indicated that Medicaid may be under consideration for cuts in an upcoming deal on the debt limit. These cuts could lead to a devastating loss of coverage for people that rely on the program. Because Medicaid is the primary payer of HCBS, and HCBS is a service that is optional for states to provide, HCBS programs could be one of the first on the chopping block if cuts to Medicaid were to take place. For people with IDD, the loss of HCBS would deprive them of the support they need to be independent.

With nearly 600 state and local chapters, The Arc is the largest national community-based organization advocating for and with people with IDD and their families. For the past year, The Arc has been collaborating with state chapters in every region of the country to learn how Medicaid works for people with disabilities and to closely monitor changes to Medicaid access and services. Our chapters have shared hundreds of stories from self-advocates with disabilities and their family members to document how Medicaid supports families, how Medicaid’s strict eligibility rules negatively impact people with IDD, and the unnecessary complications of the Medicaid system. The Arc is analyzing information collected by state policy experts and relies on the perspectives of people directly receiving Medicaid to track the potentially disastrous impact of Medicaid disenrollments across the country. One thing has become abundantly clear— the unwinding of Medicaid’s continuous coverage will result in more confusion and leave people without the essential care, supports, and services that they need to live independently in the community.

As states restart Medicaid eligibility reviews, the needs of people with disabilities must be at the forefront. Many people with IDD and their families already face challenges in navigating our complex health care system. Program participants need to know that they must complete a renewal, which may prove difficult as studies show the majority of people covered by Medicaid are unaware that Medicaid renewals are restarting. States should make every effort to reach people who may have moved, or people who do not have a stable living arrangement, to inform them of their need to apply for renewal. States should also help Medicaid enrollees update their current mailing address and phone number with their Medicaid agency prior to sending any forms out. Furthermore, renewal forms are often confusing and inaccessible. They include complicated legal language and needlessly burdensome reporting requirements.  States should have accessible in-person and virtual options to complete Medicaid renewal forms, with staff trained to help people navigate this process and gather necessary documents. If an individual is no longer eligible for Medicaid, states should help them obtain coverage through the Affordable Care Act marketplace.

With up to 15 million people expected to lose Medicaid coverage during this renewal process, people with IDD face increasing difficulties in access and coverage. The Arc has created a host of resources to ensure people with IDD know their rights, understand the process, and are ready for Medicaid renewals. We encourage you to use and share these resources with your networks to ensure people with disabilities have access to the information and support necessary to protect their vital Medicaid coverage.