September 16, 2024 | Vol. MMXXVI | Issue 95

Budget and Appropriations

On September 9, both chambers of Congress came back into session. Speaker of the House Mike Johnson (R-LA-4) put forward a continuing resolution (CR) to fund the government for the next 6 months, which he then pulled from the floor due to division within his caucus. The Senate has yet to introduce legislation to fund the government. The Senate and House are expected to come together to pass a continuing resolution in order to fund the government by October 1.

Plain Language 

Congress has come back after taking a break in August. The House of Representatives and the Senate both need to work on funding the government.

Action Steps

Call and educate your Members of Congress on the importance of increasing funding for programs for people with disabilities in FY 2025. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.

Congress Works on Passage of the Autism CARES Act of 2024

The House of Representatives and Senate continue to work on passage of the Autism CARES Act (H.R. 7213/S. 4762). The House is expected to vote on the CARES Act this week under suspension of the rules, and the Senate is still working on its timing. The updated version of the bill, to be voted on in the House of Representatives, reconciles the difference between the House and Senate bills and includes many things that AUCD has advocated for, including language to:

• Recognize the need to strengthen the capacity of Leadership Education in Neurodevelopmental Disabilities (LEND) Programs

• Expand the research of the NIH and ensure research includes people with higher support needs

• Publish a report on how to increase Developmental-Behavioral Pediatricians (DBPs)

• Create a new center focused on communication needs

• Provide training and technical assistances to states to improve access to evidence-based services, tools, and technologies to improve communication

Plain Language 

Congress is working on timing for when they will vote on the Autism CARES Act. The bill will improve research and training focused on people with autism and other developmental disabilities.

Action Steps

Call and educate your Members of Congress on the importance of supporting and passing the Autism CARES Act by September 30.

You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121. AUCD and the Autism Society of America have drafted this policy brief to help in outreach to offices.

Senator Sanders Introduces Legislation to Address Long COVID Crisis

On August 2, Senator Bernie Sanders (I-VT) introduced the Long COVID Research Moonshot Act of 2024 (S. 4964), which would provide “$1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to support Long COVID research, the urgent pursuit of treatments, and the expansion of care for patients across the country.” Long COVID is a chronic condition that affects many people who have had COVID-19. It can include organ damage, autoimmunity, and other long-term symptoms. According to the National Center for Health Statistics, around 3 in 10 adults in the U.S. who have had COVID report getting Long COVID—approximately 17 million adults.

Plain Language 

Senator Sanders introduced legislation to fund research on Long COVID, which is when people have certain COVID-19 symptoms for longer than 3 months. Not much is known about Long COVID, even though it affects millions of people.

Action Steps

Read more about the Long COVID Research Moonshot Act.

Bipartisan Group of Senators Urge CMS to Provide Medicare Coverage for Standing Elevation Systems in Power Wheelchairs

On August 9, Senators Tammy Duckworth (D-IL), Bob Casey (D-PA), and Marsha Blackburn (R-TN) sent a letter to the Centers for Medicare and Medicaid Services (CMS) calling for Medicare coverage of standing systems embedded in power wheelchairs. Currently, Medicare beneficiaries must pay out of pocket for these standing systems, even though they help many people get around more easily and are considered by many to be medically necessary. The Senators note that the “systems enable users to achieve a standing position, which can greatly enhance their independence, improve metabolic functions, reduce the risk of secondary complications, such as pressure sores and osteoporosis, and improve their overall physical and mental well-being.”

Plain Language 

Senators Tammy Duckworth, Bob Casey, and Marsha Blackburn sent a letter to ask the Centers for Medicare and Medicaid Services to help people who use power wheelchairs afford a certain part of their power wheelchair.

Action Steps

Read the letter to CMS.

Senator Casey Holds Aging Committee Hearing on Caregiving

On August 7, Senator Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, held a field hearing on caregiving, entitled “From Infancy to Aging: The Effects of Caregiving Across the Lifespan.” Witnesses included Pennsylvania caregivers, home and community-based services recipients, and providers, all of whom spoke to the challenges of the workforce shortage and the lack of availability of care.

Plain Language 

Senator Bob Casey held a hearing where he heard from people with disabilities who receive home and community-based services, caregivers, and other people involved in home care.

Action Steps

Watch the hearing.

Office of Disability Employment Policy Announces New Digital Accessibility Resource

On August 8, the Office of Disability Employment Policy (ODEP) at the U.S. Department of Labor announced a new resource on digital accessibility for people with disabilities. Supporting Digital Accessibility in the Public and Private Sectors summarizes challenges that people with disabilities face accessing information and communication technology and provides strategies for employers who want to improve digital accessibility in their organizations. The resources, from ODEP’s Employer Assistance and Resource Network on Disability Inclusion (EARN), also details federal legal requirements regarding access to information, technology, and services.

Plain Language 

Many people with disabilities do not have equal access to the internet and other technology. The Department of Labor has a new document that would help people access the services you can find online, like applying for a job or learning more about an issue.

Action Steps

Read Supporting Digital Accessibility in the Public and Private Sectors.

National Council on Disability Releases Report on Disability Inclusion in Clinical Trials

On August 14, the National Council on Disability (NCD) released a report entitled “The Implicit and Explicit Exclusion of People with Disabilities in Clinical Trials.” This report details the persistent exclusion of people with disabilities in clinical trials and the need to ensure people with disabilities are included to be able to address health disparities. The report finds that while “multiple efforts in recent years have been made to enhance diversity in clinical trials…disability is not included as a dimension of diversity in such efforts.”

When people with disabilities are not included in clinical trials, the scientific community lacks important information about how they will be affected by various treatments and prevents them from benefiting from new treatments. NCD also found that even though people with Down syndrome are at higher risk of developing Alzheimer’s disease during their lifetime, clinical trials for Alzheimer’s treatments exclude this population. The report details how longtime exclusion from clinical trials has negatively impacted people with disabilities.

Plain Language 

The National Council on Disability has a new report that talks about how people with disabilities are often not included in research. This is a problem because if people with disabilities are not included in this research, people do not know if certain drugs or treatments will help them. In the advocacy movement, we say “nothing about us, without us” so it is known that including people with disabilities in research is important.

Action Steps

Read NCD's report.

Social Security Administration Announces Efforts to Simplify SSI Applications

On August 27, the Social Security Administration announced that it was implementing a new effort to simplify application processes for people applying for Supplemental Security Income (SSI). The Administration will “offer an online, streamlined application for some applicants starting in December” by establishing a fully online iClaim application that will make the experience of applying for benefits more user-friendly and less time-consuming.

Plain Language 

The Social Security Administration is making it easier and faster to apply for Supplemental Security Income (SSI), which helps many people with disabilities.

Action Steps

Read about the new efforts to simplify SSI applications.

U.S. Department of Housing and Urban Development Releases Guidance for Public Housing and Mainstream Vouchers

On August 20, the U.S. Department of Housing and Urban Development (HUD) released guidance creating “new alternative requirements and waivers that enable public housing agencies (PHAs) to better utilize Mainstream Vouchers to help persons with disabilities transition from and avoid institutional settings.” Mainstream Vouchers provide housing assistance to people with disabilities, especially for people transitioning out of non-integrated settings like institutions and people at risk of institutionalization or homelessness. The new guidance includes giving participants more time to search for housing before they need to request an extension and allowing PHAs to establish a separate waiting list for the voucher in the event it might help ease the burden of finding eligible applicants.

Plain Language 

The U.S. Department of Housing and Urban Development is making it easier for people with disabilities to find and access public housing.

Action Steps

Read the guidance from HUD.

Interagency Autism Coordinating Committee (IACC) to Hold Strategic Plan Update Meeting

On Monday, September 23, the Interagency Autism Coordinating Committee (IACC) will hold a virtual meeting to discuss the draft 2024 IACC Strategic Plan Update, which focuses on co-occurring conditions in autism. The call will be from 9:00 AM ET – 11:00 AM ET. Learn more and register.

Register for the White House Office of Public Engagement Aging and Disability Communities Call

The White House Office of Public Engagement regularly hosts calls to discuss any federal updates that will affect older adults and people with disabilities. The next call is September 19 at 2:00 PM ET. Register.

Check out the latest episode of "Tuesdays with Liz: Disability Policy for All"

“Tuesdays with Liz: Disability Policy for All” is a YouTube video series highlighting current issues and hot topics in disability policy. Past guests of Tuesdays with Liz include U.S. Senators, U.S. Representatives, agency officials, AUCD leadership, and key members of the disability community.

Liz Weintraub is AUCD's Senior Advocacy Specialist and the host of "Tuesdays with Liz: Disability Policy for All."

Liz has extensive experience practicing leadership in self-advocacy and has held many board and advisory positions at state and national organizations, including the Council on Quality & Leadership (CQL) and the Maryland Developmental Disabilities Council.

Find the full playlist on YouTube or check out the latest episode featuring U.S. Representative Marc Molinaro from New York.

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