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May 6, 2024 | Vol. MMXXIII | Issue 90
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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. For example, the Budget proposes to invest $150 billion over ten years for Home and Community Based Services and proposes to provide $14.4 billion for special education. 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 working on its process to fund the federal government for FY 25. The Labor-Health-Human Services-Education-Related Agencies (LHHS) subcommittees in the House of Representatives and Senate have been holding hearings, accepting testimony from organizations, and are receiving priorities for funding from Members of Congress. AUCD submitted this testimony [CS1] to the House of Representatives and will submit similar testimony to the Senate when it is due on May 24th. AUCD has been also meeting with offices to share its priorities for funding in FY 25.
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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 and Senate Introduce the Long-Term Care Workforce Support Act
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On April 15th, Representative Dingell (D-MI-6), Senator Casey (D-PA), Senator Kaine (D-VA), and Senator Baldwin (D-WI) introduced the Long-Term Care Workforce Support Act (S. 4120 / H.R. 7994). The bills will “ensure that caregiving can be a sustainable, lifelong career by providing substantial new funding to support workers in every part of the long-term care industry, from nursing homes to home-care to assisted living facilities.” Specifically, the bills will increase the number of direct care professionals, including in rural communities; provide pathways to enter and be supported in the workforce for women, people of color, and people with disabilities; improve compensation
for direct care professionals; improve access to and quality of long-term care; and more.
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Plain Language
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On April 15th, Representative Dingell (D-MI-6), Senator Casey (D-PA), Senator Kaine (D-VA), and Senator Baldwin (D-WI) introduced the Long-Term Care Workforce Support Act (S. 4120 / H.R. 7994). The bills will help caregivers have better jobs and give more money to caregivers.
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Action Steps
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Read the bill text. Read the announcement from Representative Dingell. Call and educate your Members of Congress on the importance of improving access to caregivers and paying them a better wage. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.
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U.S. Department of Health and Human Services Finalizes Rule to Strengthen Protections Against Disability Discrimination
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On May 1, the Department of Health and Human Services (HHS), Office for Civil Rights (OCR), finalized a rule that prohibits discrimination on the basis of disability. The rule titled “Discrimination on the Basis of Disability in Health and Human Service Programs or Activities” advances equity and improves the protections provided in Section 504 of the Rehabilitation Act of 1973. Section 504 protects persons with disabilities from discrimination based on their disability by programs that receive federal funding from any federal department or agency. This includes many hospitals, nursing homes, group homes, mental health centers and other health and human service programs. The rule prohibits the use of any measure, assessment, or tool that discounts the value of the life of a person with a disability, defines what accessibility means for websites and phone applications, adopts the U.S. Access Board’s
standards for accessible medical diagnostic equipment, and more. The rule takes effect 60 days after publication.
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Plain Language
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On May 1, the U.S. Department of Health and Human Services announced a new rule that stops the discrimination of people with disabilities when accessing healthcare and human services from places that receive money from the federal government. For example, the rule will make sure that people with disabilities can get access to medical equipment in doctor’s offices.
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Action Steps
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Read the rule. Read the factsheet about the rule.
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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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Centers for Medicare and Medicaid Services Announce Extension of Special Enrollment Period for Health Insurance
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On March 28, the Centers for Medicare and Medicaid Services (CMS) announced an extension of the temporary Special Enrollment Period (SEP) for people in Medicaid or Children’s Health Insurance Program (CHIP) and will be
losing coverage because of the unwinding of the Medicaid Continuous Enrollment Condition Operations that happened during COVID-19. The Special Enrollment Period is an opportunity for people to be able to maintain healthcare coverage as they transition off Medicaid or the CHIP and into a Marketplace health plan that is part of the Affordable Care Act.
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Plain Language
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The Centers for Medicare and Medicaid Services announced that they will be helping people that are moving from Medicaid or the Children’s Health Insurance Program (CHIP) to other insurance until November 30. This will
help make sure that people with disabilities who get health insurance from Medicaid or CHIP do not go anytime without having insurance.
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Action Steps
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Read more about the Special Enrollment Period. Read about the eligibility for the Special Enrollment Period.
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USAging Announces National Caregiver Champion Collaborative
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On April 26, USAging announced the National Caregiver Champion Collaborative (CCC). The purpose of the CCC is to facilitate and support peer networking and engagement for those leading caregiving services and supports. The CCC will create space for sharing
successful strategies and best practices. The CCC is administered by USAging through a cooperative agreement with the Administration for Community Living.
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Plain Language
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On April 26, USAging and the Administration for Community Living announced a new group that will meet to discuss caregiving and support caregivers. The group will be made up of caregivers and will be a place to share the best ways to support them.
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Action Steps
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Read more about the National Caregiver Champion Collaborative.
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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 9, 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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