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May 20, 2024 | Vol. MMXXIII | Issue 91
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Budget and Appropriations
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Following the State of the Union, President Biden released his Fiscal Year (FY) 2025 budget. Many programs that provide direct services to people with disabilities, such as Medicaid’s Home and Community Based Services (HCBS) and special education are proposed to get increases. The budget also proposes to level fund many other programs for people with disabilities including the programs under the Developmental Disabilities and Bill of Rights Assistance Act, including the University Centers for Excellence at $43 million and the Autism and Developmental Disabilities program (that includes the Leadership in Education and Neurodevelopmental Disabilities program) at $56
million.
Congress is holding hearings and writing the appropriations bills. On May 16th, Chairman Cole (R-OK) released the schedule for the mark-up of the twelve appropriations bills, including the Labor-Health-Human Services-Education and Related Agencies (LHHS) bill. The LHHS bill is scheduled for mark-up on Thursday June 27th in the LHHS Subcommittee and to be marked-up in the Appropriations Committee on July 10th. Chairman Cole also released the Interim Fiscal Year 2025 Subcommittee Allocations. These allocations are the amount of funding that each appropriations bill will have to allocate to programs in its jurisdiction in FY 25. The Senate is also working to hold hearings and write bills. The LHHS Subcommittee is also accepting public testimony until May 24th.
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Plain Language
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Congress has also already begun work to fund the government for next year, Fiscal Year 2025. The President has released his FY 2025 budget and Members of Congress are sharing their priorities with the Committee that decides how much money programs get each year.
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Action Steps
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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.
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House of Representatives Marks Up the Autism CARES Act of 2024
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On May 16th the House Energy and Commerce Subcommittee on Health held a mark-up on 23 pieces of legislation, including the Autism CARES Act of 2024 (H.R. 7213). Representative Guthrie (R-KY-2) introduced an amendment to the bill on behalf of Representative Smith (R-NJ-4) that included additional changes to the text. The bill will support and expand the research of the Institutes of Health, support the capacity of the existing Leadership in Education in Neurodevelopmental Disabilities
programs, require a report on how to increase the number of Developmental Behavioral Pediatricians, and more. The subcommittee voted the bill out of committee 22-0. The next step is the for the bill to be marked-up in the full committee.
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Plain Language
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On May 16th, the House Energy and Commerce Subcommittee on Health voted on the Autism CARES Act of 2024. This is the first step in the process. The bill will improve research and training focused on people with autism and other developmental disabilities. The bill passed in the subcommittee with a vote of 22-0.
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Action Steps
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Read the bill text. Watch the mark-up. Call and educate your Members of Congress on the importance of improving research, training, and services for individuals with autism and other developmental disabilities. 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.
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House and Senate Introduce Domenic and Ed’s Law
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On May 15th, Senator Coons (D-DE), Senator Vance (R-OH), and Representative Magaziner (D-RI-2) introduced Domenic and Ed’s Law (S. 4333 / H.R. 8407). The bipartisan, bicameral legislation will allow a parent whose child develops a total and permanent disability to be eligible for a student loan discharge.
Currently, a student who has an injury or illness resulting in a total and permanent disability is eligible to have their federal student loans discharged, but parents who have borrowed loans are not. The bills were referred to the House Education and Workforce Committee and the Senate Health, Education, Labor and Pensions Committee.
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Plain Language
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On May 15th, Senator Coons (D-DE), Senator Vance (R-OH) and Representative Magaziner (D-RI-2) introduced Domenic and Ed’s Law (S. 4333 / H.R. 8407). The bills will allow parents to get rid of their student loans for their child when their child becomes permanently disabled.
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Action Steps
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Read the bill text. Read the announcement from Senator Coons. Call and educate your Members of Congress on the importance of making sure parents can afford college. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.
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House and Senate Introduce Alternatives to Guardianship Education Act
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On May 8th, Senator Casey (D-PA) and Representative Gay Scanlon (D-PA-5) introduced the Alternatives to Guardianship Education Act (S. 4283 / H.R. 8328). The bills will help increase awareness of alternatives to guardianship, like supported decision making and shares information and resources with health care workers,
educators, family members, and court personnel through education programs. The bills also require states to collect data on guardianships and creates grant programs to implement education programs to increase awareness of guardianship alternatives and more. The bill was referred to the House Education and Workforce Committee and the Senate Health, Education, Labor and Pensions Committee.
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Plain Language
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On May 8th, Senator Casey (D-PA) and Representative Gay Scanlon (D-PA-5) introduced the Alternatives to Guardianship Education Act (S. 4283 / H.R. 8328). Guardianship is when someone else makes some decisions for a person with a disability. This bill will help teach people about different ways to help people with
disabilities to make decisions without guardianship.
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Action Steps
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Read the bill text. Read the announcement from Representative Senator Casey. Call and educate your Members of Congress on the importance of alternatives to guardianship. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.
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Reminder: Food and Drug Administration Announced Proposed Rule to Ban Electrical Stimulation Devices
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A reminder that the Food and Drug Administration is accepting comments on the proposed rule until May 28! On March 26, the (FDA) announced a new proposed rule that would ban the use of electrical stimulation devices that are used for self-injurious or aggressive behavior. Currently, it is legal to use electrical stimulation
devices to modify the behavior of children and adults. The FDA has determined these devices put people at a substantial risk of illness or injury that cannot be solved with just labeling changes. This proposed rule comes after a court decision to vacate a prior ban on electrical stimulation devices passed in the Federal Food, Drug, and Cosmetic Act.
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Plain Language
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The Food and Drug Administration (FDA) has announced a new rule that would end the use of devices that given an electric shock to a person’s skin so they stop a behavior. The FDA thinks that using these devices can seriously hurt a person. The FDA is accepting comments until May 28 about why it should stop these devices from
being used.
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Action Steps
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Read the rule and submit comments.
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More Information and Resources on New and Forthcoming Regulations
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The Administration on Community Living has put together this summary of some of the new and forthcoming regulations that will protect the rights and support people with disabilities in healthcare and other federally funded programs. These rules include:
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Register for the White House Office of Public Engagement Aging and Disability Communities Call
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The White House Office of Public Engagement regularly hosts calls to discuss any federal updates that will affect the older adults and people with disabilities. The next call is May 30, at 2:00 PM EST. Register.
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Check out the latest episode of Tuesdays with Liz: Research for All
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"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 Development Disabilities Council.
This April and May, AUCD is releasing a new series called "Tuesdays with Liz: Research for All." Check out the first episode in the series featuring Andrew Houtenville from the University of New Hampshire Institute on Disability in "Tuesdays with Liz: Employment Statistics for People with Disabilities from StatsRRTC."
Find the full playlist on YouTube or check out the latest episode featuring U.S. Senator Chris Murphy.
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