April 18, 2025
Dear Down Syndrome Community,
As we navigate the evolving landscape under a new Administration and Congress, we recognize that understanding the policy proposals and changes impacting individuals with Down syndrome can be an overwhelming task. We are writing to flag some issues that are of grave concern to the United Coalition for Down Syndrome (UCDS) and provide resources to keep you up-to-date and help inform your action decisions.
UCDS is a coalition of national Down syndrome organizations that unite to facilitate collective action and speak with a unified voice concerning critical issues that impact the Down syndrome community in the United States. All of our organizations remain steadfastly non-partisan, focusing our policy agenda solely on the well-being of individuals with Down syndrome and their families.
The issues outlined below (see appendix) represent important policy changes that will disproportionately impact people with Down syndrome and their families. Research is also an important priority and more information will be coming in a separate document.
We urge you to contact or meet with your federal legislators with the following messages:
| Issue | Position | Call to Action – where to go & what to do |
| Medicaid | UCDS opposes all attempts to cap, cut, or otherwise limit and weaken Medicaid. | ● NDSC has an action alert here. ● NDSS has an action alert here. |
| US Department of Education | UCDS believes a strong Department of Education is critical to ensure protections for students with disabilities. | ● NDSC has an action alert here. ● NDSS has an action alert here. |
| Administration for Community Living | UCDS calls for the restoration of ACL and its important programs. | ● Call your Members of Congress – you can call the Capitol Switchboard at 1-202-224-3121 and ask to be connected to your Representative and Senators (you can find out who represents you here). ● Call the Department of Health and Human Services at 1-877-696-6775. ● Call the White House at 1-202-456-1414. |
Now is the time to take action!
We understand that keeping track of these developments can be overwhelming. It is easy to feel powerless; however, we know from experience that the Down syndrome community possesses a powerful collective voice that has proven effective in the past, such as when we successfully pushed to remove discriminatory language that would have restricted access to the latest Alzheimer’s drugs.
We urge you to invest just five minutes for each topic to amplify your voice or pick one topic that is most important to you. The information below is designed to help you understand quickly and in plain language the principles of each urgent policy.
When so much is at stake, it is crucial to unite as a community and speak with one voice about the devastating consequences of these proposed changes and policies.
Feel free to reach out to any of our organizations for more information or to share your advocacy efforts.
NDSC: [email protected]
NDSS: [email protected]
LuMind IDSC: [email protected]
Gigi’s Playhouse: [email protected]
More information about these issues
MEDICAID
Why is it important?
Medicaid is a government program that covers approximately 83 million people who have limited resources, including 17 million people with disabilities. It serves as a vital 1
lifeline for most individuals with Down syndrome and their families. The program is partially funded by and primarily managed by state governments, while the federal government provides a significant portion of the funding and sets baseline requirements. Medicaid provides health care coverage for essential medical services like doctors’ visits, hospital stays and prescriptions and help with personal tasks like feeding, bathing and dressing. Through its state waiver program, Medicaid also provides Home and Community-Based Services (HCBS) for people with disabilities like job coaching, personal supports, and assistive technology to help people with disabilities to work and live independently in the community. Medicaid also pays for many of the services that students with disabilities receive in schools such as speech and occupational therapies, behavioral supports and more. Medicaid helps people with disabilities to get the care they need to protect their health and well-being and to live with dignity and independence.
UCDS opposes all attempts to cap, cut, or otherwise limit and weaken Medicaid.
What is at risk?
The United States Congress has initiated the budget reconciliation process in the 119th Congress. Budget reconciliation is used to expedite budget-related laws and is limited to provisions that directly affect federal spending or revenue. Congress has to decide how the government will spend its budget, and some Members of Congress believe the government should spend less money on Medicaid. Therefore, cuts to Medicaid are currently among the top proposed cuts in budget reconciliation.
What can you do?
It is important to contact your elected officials to share your story of how Medicaid helps you and your family to live and thrive in the community. Ask them to protect Medicaid and make no cuts, caps, work requirements or other restrictions on Medicaid.
- NDSC Resources: NDSC has an action alert here. NDSC has developed an explainer about Medicaid here.
- NDSS Resources: Advocates can use the NDSS toolkit here and NDSS Action Alert here.
U.S. DEPARTMENT OF EDUCATION
Why is it important?
A strong U.S. Department of Education (“Department”) is crucial for students with disabilities because it ensures that they receive the support, resources, and legal protections necessary to access a quality education. The Department of Education enforces key federal laws like the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act, which guarantee students with disabilities the right to a free and appropriate public education (FAPE) and prevent discrimination. It also provides essential funding to states and school districts to support programs that serve students with disabilities, ensuring they have access to specialized instruction, assistive technology, and necessary accommodations. The Department ensures that schools comply with disability laws and meet the needs of students with disabilities. If schools fail to provide appropriate services, families can turn to the Department for enforcement actions. Additionally, the Department sets policies and initiatives that promote inclusive education, ensuring that students with disabilities can learn alongside their peers in the least restrictive environment possible. The Department offers resources, training, and technical assistance to educators, school staff, and parents to help them better support students with disabilities. It funds technical assistance centers and research into best practices for special education, helping to improve teaching methods, accessibility, and outcomes for students with disabilities.
UCDS believes a strong Department of Education is critical to ensure protections for students with disabilities. You can read more about what the Department of Education does and why it is important for students with disabilities here. UCDS has sent a letter to Secretary McMahon and Members of Congress expressing our concerns. You can read the letter to Secretary McMahon here and the letter to Congress here.
What is at risk?
UCDS is deeply concerned about recent actions taken by President Trump and Education Secretary Linda McMahon to close the U.S. Department of Education (the Department). On March 20, 2025, President Trump signed an Executive Order (EO), “Improving Education Outcomes by Empowering Parents, States and Communities,” to direct Secretary of Education Linda McMahon to do whatever is necessary, to the extent permitted by law, to close the Department. This EO follows Secretary McMahon’s recent firing of nearly 50% of the Department of Education’s workforce. Additionally, approximately $900 million has already been cut from important research, teacher training, and other critical programs. The Administration estimates that over a $1 billion in total funding cuts have been made, and millions of dollars for grants that are critically important for students with disabilities are on the chopping block.
Both the President and Secretary McMahon have also publicly shared their intent to split up the various offices within the Department and reassign their responsibilities to other federal agencies. Proposals are also being considered to potentially block grant IDEA funds to the states with no strings attached, as well as potentially turn IDEA funding into a voucher system. There are current legal challenges to these actions, but they reflect a broader initiative by the current Administration to restructure the Department and diminish its importance and reach.
What can you do?
- NDSC Resources: You can read more about what the Department of Education does and why it is important for students with disabilities here. NDSC has an action alert here.
- NDSS Resources: NDSS has an action alert here.
ADMINISTRATION FOR COMMUNITY LIVING
Why is it important?
The Administration for Community Living (ACL) was formed in 2012 as a hub for people with disabilities and older adults to coordinate community living across the U.S. Department of Health and Human Services (HHS) and with other federal agencies and is based upon the fundamental principle that “older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities.” ACL’s effectiveness has been well-documented by years of data showing a decrease in institutionalization and increase in access to community-living resources and services for older adults and adults with disabilities. It oversees many different programs for people with disabilities in areas such as independent living, employment, advocacy and empowerment, emergency response services, health care, and more.
A small sampling of the programs for people with disabilities that ACL has cultivated and manages that are now at-risk include:
● Independent living – ACL awards and manages thousands of grants and contracts to help people of all ages live independently in their communities, including those administered by the Centers for Independent Living (CILS), which are nonprofit, community-based, non-residential organizations that are controlled and operated by and for people with disabilities that provide an array of services to keep people with disabilities living in the community.
● Civil rights protections- ACL oversees Protection and Advocacy (P&A) Systems in every state, which inform people of their rights, investigate suspected abuse and neglect, and provide free legal representation and support to people with disabilities. Each state has a designated P&A agency, often known as Disability Rights Centers. To find and connect with your state’s P&A organization, click here.
● Data collection – ACL initiatives and runs data collection projects on national trends in services for people with intellectual and developmental disabilities relating to community living, in-home supports, health, employment, and more.
● State Councils on Developmental Disabilities – ACL funds and oversees the DD Councils in every state, which create programs to improve the daily lives of people with I/DD.
● University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs)- ACL coordinates and oversees UCEDDs, which are centers attached to universities that advise federal, state, and community policymakers to promote opportunities for individuals with developmental disabilities to exercise self-determination and to be independent, productive, integrated, and included in all facets of community life.
● Employment – ACL awards grants to communities to promote competitive, integrated employment and “Employment First” programs, and has developed federal partnerships with agencies such as the Department of Education to break down silos between independent living, vocational rehabilitation, and special education programs
● Caregivers and Respite – ACL coordinates programs such as the National Family Caregiver Support Program and the Lifespan Respite Care Program for caregivers of people with disabilities and older adults.
What is at risk?
UCDS is deeply troubled by the recent announcement by HHS to eliminate thousands of HHS staff and reorganize ACL by splitting its functions across other agencies. Our deep concerns about the dismantling of ACL are exacerbated by the recent actions taken by the Administration to gut the U.S. Department of Education and its proposal to move the Office of Special Education Programs (OSEP) to HHS. Although UCDS opposes this move, ACL would have been a logical place for OSEP to reside in HHS if it is moved by Congress, because of ACL’s subject matter expertise in disability-related issues. However, the workforce reduction of at least 20,000 HHS employees and scattering of ACL programs across other agencies would make it even more difficult for HHS to oversee special education and the implementation of the Individuals with Disabilities Education Act (IDEA).
UCDS is similarly concerned that the proposed cuts to Medicaid, Supplemental Nutrition Assistance Program (SNAP) and the Social Security Administration by some Members of Congress and the Administration would worsen the negative impact of dissolving ACL because people with disabilities will have access to fewer resources to live and thrive in their communities. Cuts to any or all of these vital programs for people with disabilities are devastating and will set back by decades our progress towards inclusion in education, employment, and community living.
What can you do?
UCDS encourages you to make several calls to try to restore ACL and its important programs:
● Call your Members of Congress – you can call the Capitol Switchboard at 1-202-224-3121 and ask to be connected to your Representative and Senators (you can fi nd out who represents you here.
● Call the Department of Health and Human Services at 1-877-696-6775.
● Call the White House at 1-202-456-1414.
- Here is a script you can use: My name is XXXX, and I live in (city, state). I am calling to ask you to restore the Administration for Community Living (ACL) in HHS, along with all of its programs for people with disabilities and older adults. ACL is a vital hub in the federal government for disability-related resources and services, and its dismantling will signifi cantly diminish opportunities for people with disabilities to live and work in their local communities. Please support people with disabilities and their families by supporting the Administration for Community Living. Thank you!
- NDSC Resources: Statement on ACL
- NDSS Resources: Statement on ACL
OTHER UCDS PRIORITY LEGISLATION
UCDS’ advocacy efforts are not solely defensive in nature; we are also championing some pieces of bipartisan legislation that have the potential to protect and advance the rights and opportunities of people with Down syndrome. We encourage you to advocate for these bills as well.
● Eliminating the Marriage Penalty in SSI Act (EMPSA) (S.73/ H.R. 1757): this bill would eliminate the marriage penalty in Supplemental Security Income (SSI) so that people with Down syndrome and other IDD could get married without a reduction in or loss of SSI benefits.
- NDSC Resources: NDSC will be launching a new action alert on this bill in the near future. Sign up here to get this new call to action when it is released.
● Ensuring Nationwide Access to a Better Life Experience (ENABLE) Act (S.627 / H.R. 1436): this bill makes permanent three provisions of ABLE accounts that were included in the Tax Cuts and Jobs Act of 2017 and are currently set to expire at the end of 2025. Without the permanent extension of these provisions, individuals with disabilities would face more limited opportunities to save for their independence and futures.
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- Learn more about the expiring provisions using this toolkit from NDSS
○ Take action using this action alert from NDSS
- Learn more about the expiring provisions using this toolkit from NDSS
● Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1520): this bill builds upon protections in the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act to prevent discrimination against a patient’s disability status in the organ transplant process. The bill creates a timely review function at the Office of Civil Rights within the Department of Health Human Services.
○ You can take action using this action alert from NDSS!
Thank you for your advocacy!
Gigi’s Playhouse Down Syndrome Achievement Centers
LuMind IDSC
National Down Syndrome Congress
National Down Syndrome Society
