Testifying Before Congress on Bridging Health Equity Gaps for People with Disabilities and Chronic Conditions

Today, as we approach year three of the COVID-19 crisis, The Arc testified before the Committee on Ways and Means, Subcommittee on Health, in the U.S. House of Representatives.

Bethany Lilly, The Arc’s Senior Director of Income Policy, represented people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them; all of whom have directly experienced the barriers that people with disabilities face in accessing health care.

Below is a summary of Lilly’s remarks before the committee. You can access her full testimony here.

My name is Bethany Lilly and I am the Senior Director of Income Policy at The Arc of the United States. I am here today representing people with intellectual and developmental disabilities, their families and friends, and the essential frontline disability service providers who support them.

As a person with a disability, I want to acknowledge exactly how devastating the past two years of pandemic have been to my community. Millions of people with disabilities and our loved ones have lost their lives or faced two years of isolation and lockdown to protect ourselves. The frontline health care workers serving people with disabilities have faced the same risks and we mourn those we have lost, like Angie Reaves of Virginia.

My written testimony goes into detail about the common challenges and barriers that people with disabilities have accessing health care, the impact the pandemic has had on all of this, and how we can move forward to build a more equitable system. But to provide some highlights:

All people with disabilities need health insurance, but we currently have a very haphazard system of multiple private and public options that leaves many gaps: Medicaid, Medicare, the VA, the Indian Health service, employer-sponsored coverage, and Affordable Care Act to name a few. These gaps in access are concerning for everyone, but even more so for people with disabilities who often rely on health care to maintain their existing level of functioning and lives. In particular, the two-year waiting period for access to Medicare for Social Security Disability Insurance beneficiaries leaves people with very work-limiting disabilities without affordable health care. This is why we strongly support Chairman Doggett’s Stop The Wait Act. We also support efforts to close the Medicaid expansion coverage gap and improve the affordability of ACA subsidies.

Availability of particular services is also crucially important for people with disabilities. Many people with disabilities rely on home and community-based services (HCBS) not only to keep themselves healthy but to allow them to fully participate in their communities. Approximately 23% of all COVID deaths occurred in congregate settings that are the alternative to HCBS. So it is no surprise that both people with disabilities and older adults prefer those community settings. And this is why over 800,000 people across the United States are on waiting lists for HCBS. We desperately need comprehensive investment in HCBS so that people with disabilities can access the services they need. I know many Members of this Committee have co-sponsored the Better Care Better Jobs Act and I thank you all for supporting that investment in people with disabilities.

But access to HCBS isn’t enough–people with disabilities also need other comprehensive services. We need an out-of-pocket cap in Medicare Part D so beneficiaries aren’t on the hook for thousands of dollars in out-of-pocket costs for life-saving medication. Medicare needs to cover all basic health care services, including comprehensive dental, vision, and hearing benefits in Part B so that people with disabilities have access to these services.

And the health care system as a whole must acknowledge and treat people with disabilities as real people. During the past two years, our network had to repeatedly bring lawsuits or file complaints with HHS about crisis standards of care and hospital visitor policies discriminating against people with disabilities and their families. Unfortunately, this kind of discrimination is not new. Research makes it clear that many in the medical profession do not see people with disabilities having the same quality of life as people without disabilities and the health care systems reflect this.

The deep-seated bias against people with disabilities is all the more concerning knowing that COVID is a mass-disabling event. I know members of this Committee have done some work to address the needs of people experiencing Long COVID and other post-viral conditions like my fellow witness and I hope we see those investments soon. It is also crucial that we have data on people with disabilities, experiencing COVID and otherwise, that is collected with full stratification of reporting by key demographic groups.

Finally, about two other things on which the Committee has focused legislatively. First, I hope that investments the Committee has proposed to invest in medical students with disabilities are enacted soon–this is an effective way to begin to reverse bias and push back on the misconceptions about people with disabilities within the health care system. And second, I hope that we see action soon on telehealth–recent Data for Progress polling shows that 80% of all likely voters want the telehealth flexibilities created during the pandemic extended and many people with disabilities do too! We just need to ensure these options are available and accessible to all people with disabilities, just like they need to be for those in rural areas as well!

And that’s an important point about ensuring people with disabilities are included: If a policy works for people with disabilities, it will work for everyone. Working on solutions is how people with disabilities and organizations representing people with disabilities have responded to the pandemic–we have come together and explained our needs and asked to be included in the development of responsive policy.