Stop the Wait: Remove Harmful Health Care Barriers for Individuals with Disabilities

February 10, 2023

Washington, D.C. – U.S. Representative Lloyd Doggett (D-TX), Ranking Member of the House Ways and Means Health Subcommittee, with Senator Bob Casey (D-PA), Chair of the Senate Special Committee on Aging, and Representative Brian Fitzpatrick (R-PA), Member of the House Ways and Means Health Subcommittee, just introduced the Stop the Wait Act (H.R. 883 and S. 320) to end the harmful waiting periods during which Americans with serious disabilities are denied access to Medicare.

After enduring an often-long application process to receive Social Security Disability Insurance (SSDI) benefits, beneficiaries are barred from receiving payments for the five-month period following the onset of their disability. They must also wait 29 months—a 24-month waiting period after the start of their disability payments—to receive health insurance through Medicare. More appropriately described as “suffering periods,” an estimated 1.6 million Americans are currently stuck in the Medicare waiting period and, in 2018 alone, about 56,000 individuals died waiting for Medicare coverage to begin.

The Stop the Wait Act directs the Social Security Administration to phase out the five-month waiting period to receive SSDI benefits and allow those who are uninsured or unable to afford health insurance to immediately receive Medicare coverage.

“There is no justification for these delays, which deny millions of Americans access to health careand other supports when it is needed most,” said Congressman Doggett. “Restrictions designed to cut costs simply shift costs onto patients when they are most vulnerable. Ending these egregious suffering periods is all the more urgent as more Americans experience Long COVID— a condition that represents the largest new entrant to the disability community in modern history.”

“Social Security and Medicare benefits are crucial for many Americans with disabilities and those waiting for critical care, and those programs must be widely accessible without waiting periods,” said Congressman Fitzpatrick. “The waiting period for those who suffer from disabilities to access the benefits they have earned is arbitrary and unnecessary, and I’m proud to co-lead this bipartisan legislation to get rid of these delays.”

“When you pay into the Social Security Disability Insurance fund, you are entitled to your benefits—that’s the way it should be,” said Senator Casey. “Many people with disabilities, however, must endure lengthy waiting periods to receive benefits and critical health care. The Stop the Wait Act would eliminate these dangerous waiting periods and provide access to necessary benefits and often life-saving care.”

Last year, then-Chairman Doggett convened a House Ways and Means Health Subcommittee hearing to examine health access challenges faced by people with disabilities, including the 24-month Medicare waiting period.

This legislation is endorsed by a number of patient advocacy groups and other organizations, including: American Association of People with Disabilities, UnidosUS, The Arc, Autism Society of America, Little Lobbyists, American Lung Association, American Council of the Blind, National Down Syndrome Congress (NDSC), National Multiple Sclerosis Society, National Brain Tumor Society, Muscular Dystrophy Association, The Spina Bifida Association, Christopher & Dana Reeve Foundation, Epilepsy Foundation, Solve M.E./Solve Long COVID Initiative, COVID-19 Health and Safety Taskforce (CHeST), Pandemic Patients, National Alliance on Mental Illness (NAMI), Families USA, National Association of Councils on Developmental Disabilities, National Disability Institute, Social Security Works, Strengthen Social Security Coalition, Alliance for Retired Americans, Justice in Aging, Association of People Supporting Employment First (APSE), National Committee to Preserve Social Security and Medicare, National Academy of Elder Law Attorneys (NAELA), National Organization of Social Security Claimant Representatives (NOSSCR), National Association of Disability Representatives (NADR), Paralyzed Veterans of America, Special Needs Alliance, American Network of Community Options and Resources (ANCOR), American Association on Health and Disability, Center for Law and Social Policy, Lakeshore Foundation, Community Legal Services of Philadelphia, Public Citizen, Center for Medicare Advocacy, Medicare Rights Center

Leaders of stakeholder groups from across the disability and health advocacy community shared:

“Many members of the complex chronic illness community have personally felt the effects of required waiting periods as they seek compensation from Social Security Disability Insurance (SSDI) and access to Medicare health insurance coverage. Making it easier to access these crucial supports in a timely manner is a key priority for Solve M.E. We are proud to endorse and advocate for the passage of the bipartisan Stop the Wait Act, which will expand healthcare access for individuals with disabilities by phasing out these harmful waiting periods. We’ll continue to work with the office of Congressman Lloyd Doggett and other allies to deliver this important piece of legislation to individuals in the ME/CFS, Long Covid, and other post-infection disease communities.” —Emily Taylor, Vice President of Advocacy and Engagement, Solve M.E.

“Waiting periods for SSDI can be deadly for disabled people. The Stop the Wait Act will allow workers with disabilities to access the benefits they have earned and get the healthcare they need to survive.” —Maria Town, President and CEO, American Association of People with Disabilities

“The COVID-19 Health and Safety Taskforce applauds Rep. Doggett’s reintroduction of the Stop the Wait Act. As the number of Americans experiencing disabling long-term symptoms of COVID-19 continues to increase, we believe Congress must act with urgency to eliminate barriers to critical safety net resources like SSDI. Phasing out the 5-month waiting period for SSDI benefits will ensure that Americans with long COVID have access to the resources they need to thrive in their communities. We urge Congress to pass the Stop the Wait Act without delay.” —COVID-19 Health and Safety Taskforce (CHeST)

“Paralyzed Veterans of America is pleased to once again support the Stop the Wait Act and commends Rep. Doggett for his continued advocacy on behalf of Social Security and Medicare beneficiaries. As an organization representing veterans with significant disabilities who benefit from these programs, we believe the waiting periods imposed for SSDI and Medicare are an undue burden on people who desperately need these supports.” —Heather Ansley, Esq., MSW, Associate Executive Director of Government Relations, Paralyzed Veterans of America

“MDA is pleased to once again endorse the ‘Stop the Wait Act,’ which will end the 5-month waiting period for SSDI as well as the 24-month waiting period for Medicare, enabling people diagnosed with neuromuscular disease to access critical financial and healthcare resources without delay.” —Muscular Dystrophy Association (MDA)

“The 3,500 attorneys and representatives of the National Organization of Social Security Claimants’ Representatives (NOSSCR) strongly support the Stop the Wait Act. The antiquated and unnecessary five-month SSDI wait forces claimants into homeless, borrowing, delayed healthcare, and sometimes death. Now is the time to act—to deliver on the promise of Social Security by correcting an absurd statutory error.” —David Camp, President, National Organization of Social Security Claimants' Representatives (NOSSCR)

"Arbitrary waiting periods present an extreme hardship for vulnerable beneficiaries who simply can’t afford to wait months or years for access to the disability payments and Medicare coverage they urgently need. The Stop the Wait Act will ensure timely access to the benefits they have earned.” —Michael Wener, President, National Association of Disability Representatives (NADR)

“We thank Congressman Lloyd Doggett and his staff’s diligent work on the introduction of the Stop the Wait Act. This legislation is vital to many families and people with intellectual and developmental disabilities to avoid a lapse in coverage due to the current outdated policies surrounding the waiting period for disability insurance benefits. We encourage other members of Congress to join this essential piece of legislation, and we look forward to seeing it cross the finish line.” —Jordan Kough, Executive Director, National Down Syndrome Congress

“The American Lung Association is proud to support ‘Stop the Wait,’ critical legislation to ensure people facing disability or a potentially debilitating condition don’t need to wait an additional five months for support once they are approved to access healthcare and other benefits. For people who qualify for disability and urgently need healthcare like people living with lung cancer, COPD and long COVID, another five months can be the difference between life and death.” —Harold Wimmer, President and CEO, American Lung Association

“CLASP is proud to endorse the Stop the Wait Act. The waiting period to get Social Security Disability Insurance (SSDI) benefits and Medicare health insurance coverage is arbitrary and reckless, resulting in too many disabled people who can no longer work dying each year before getting their Medicare health care coverage. We applaud the Stop the Wait Act for eliminating the five-month waiting period to get SSDI benefits, and for ending the Medicare waiting period for uninsured recipients. We urge Congress to pass the Stop the Wait Act to ensure that all SSDI beneficiaries have efficient access to their payments and to health insurance coverage.” —Ashley Burnside, Senior Policy Analyst, the Center for Law and Social Policy (CLASP)

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