​Reeve Advocacy Round-Up

Posted by Reeve Staff in Daily Dose on January 25, 2022 # Advocacy and Policy

CapitolWith 2021 officially behind us, we’ve put another year of advocacy in the books.

It was a year of uncertainty, beginning with the January 6 insurrection at the U. S. Capitol and then the continuation of the COVID-19 pandemic through the emergence of new variants.

But it was also a year of opportunity. A new presidential administration was sworn into office, and a new party gained the majority in both chambers of Congress. New governors, state legislatures and local policymakers took office all around the country. Hundreds of millions of COVID-19 vaccines were administered, helping the nation get back to some sense of normalcy while being protected from a serious illness.

And 1,483 new advocates signed up to join our efforts and lend their voice to important policy discussions impacting the lives of people with paralysis and spinal cord injury (SCI). Thanks to the dedication and focus of our entire grassroots and Reeve Regional Champions, we have accomplished a lot this year on behalf of our community. Here are some highlights.

Congressional Appropriations

Every year, ensuring the continued funding of the National Paralysis Resource Center (NPRC) is among our top advocacy priorities. Because the NPRC is funded through annual Congressional appropriations, it presents a great opportunity for the Reeve Foundation and our advocates to educate members of Congress on the important work of the NPRC.

In 2021, our advocates sent over 1,500 emails to House and Senate offices sharing how the NPRC continued to help the paralysis and SCI communities and urged their Representatives to continue funding at $9.7 million. Our Regional Champions also conducted key meetings, throughout the year, garnering support for the Langevin-Fitzpatrick Dear Colleague letter to the Appropriations Committee. As a result of these efforts, the House included $9.7M in their appropriations bill.

Later in the year, we learned that the Senate appropriations subcommittee on Labor, Health and Human Services, and Education, released language that directed another $1 million for the NPRC.

Since Congress has funded the government via a continuing resolution through February 18, we will continue to urge Congress to complete the funding process with the $1M increase intact. This increase demonstrates the impact of the Reeve Foundation’s advocates, and we are grateful for their continued support of our priorities.

Total and Permanent Disability Program Reform

Last April, the Reeve Foundation joined 16 other disability rights groups in sending a letter to Secretary Miguel Cardona and Social Security Administrator Andrew Saul, requesting the Department of Education reform provisions in the Total and Permanent Disability (TPD) discharge program that have created significant barriers for people with disabilities.

The TPD discharge program allows student loan borrowers with a total or permanent disability to have their federal loans forgiven. We requested the Department of Education match data with the Social Security Administration (SSA), as they do with the Department of Veterans Affairs (VA), to automatically enroll eligible borrowers into the TPD discharge program, as well as eliminate the 3-year financial monitoring requirement all together.

In August, the Department of Education announced they would be making those changes. The Department also announced they would be discharging over $5 billion in loans. We were glad to have had an opportunity to work with coalitions to achieve this policy solution.

RAISE Family Caregivers Council

The RAISE Family Caregivers Act of 2018 directed the Secretary of Health and Human Services (HHS) to develop a national family caregiving strategy. This created the RAISE Family Caregiving Council, a board of 15 members comprising of caregivers, individuals with disabilities, health care and social service providers, state and local officials, veterans, and others.

In September, the RAISE Council delivered their initial report to Congress that outlines the challenges of family caregivers, the programs available to support them, and 26 recommendations for better supporting family caregivers. This will serve as the foundation for the national family caregiving strategy.

We thank the entire council for their hard work and would like to offer a special thanks to one of our Reeve Regional Champions, James Murtha of Michigan, who served on the council.

Complex Rehab Technology

We continued our work this year, with other coalition partners, to achieve Medicare coverage of seat elevation and standing systems in power wheelchairs.

In early October, Reeve advocates sent 690 letters to House offices urging them to sign onto the Langevin-Young letter to CMS Administrator Chiquita Brooks-LaSure, urging the agency to proceed with opening the NCD Reconsideration Request for public comment in a timely fashion. That letter received a bipartisan sign-on from 75 members of the House of Representatives.

While this issue is still ongoing, the broad support the Langevin-Young letter received will hopefully elevate the issue for CMS to resolve in 2022.

Air Carriers Access Amendments Act

The paralysis and spinal cord injury communities have known for a long time that air travel is fraught with emotional, financial, and even physical harm. From the difficulties in navigating airports, to the irreparable damage of essential wheelchairs in stowage, to injuries boarding or deplaning an aircraft, it is little wonder so many individuals report they’d rather drive long distances than fly.

That’s why we spent 2021 working closely with Paralyzed Veterans of America (PVA) and other disability rights groups to advocate for the Air Carriers Access Amendments Act (H.R. 1696). This bill would update the Air Carriers Access Act, originally passed in 1985, to ensure planes are designed to accommodate the needs of people with disabilities and allow for a private right of action if the airline fails to meet accessibility standards.

Our advocates sent 1,216 letters to Congress asking members to support this legislation, and we held an educational webinar on this bill in July. Those efforts have helped garner 23 cosponsors to date, and we are working to gather more ahead of the Federal Aviation Authority (FAA) reauthorization in 2023.

Home and Community-Based Services

When President Biden released his first budget in March 2021, it called for an investment of $400 billion to support home health care for Americans with disabilities and the aging. This was welcome news, as the disability community has been strongly advocating for additional support for home health care since the start of the pandemic.

The House ultimately included $150 billion in-home care funding in its version of the Build Back Better legislation. Smaller than the president’s request, but still a significant investment. As the summer wore on and negotiations in Congress heated up, the framework of the Build Back Better act continued to shrink, and there was a real worry that the provision would be dropped entirely.

After activating our grassroots, the Reeve Foundation sent 2,176 letters to Congress urging them to keep home care funding in Build Back Better and held meetings with key offices to educate them on the importance of this issue.

While the fate of the Build Back Better Act, President Biden’s signature domestic legislation, is still in question, the provision that increases investment in-home health care has emerged as one of the most broadly popular on Capitol Hill. That’s a testament to the hard work of our advocates and partnerships with our coalition partners.

Obviously, none of these accomplishments would have been possible without those advocates across the country who are willing to take action when called upon and share their stories with Congress. There is still much work to be done, but we can’t wait to get back to work in 2022 and continue to build on the momentum we have built together.

If you are interested in adding your voice to our advocacy efforts, you can sign up to become an advocate or contact Chris Carson, our policy and advocacy coordinator, at [email protected]. Or join our next Regional Champions policy briefing to learn more.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.