5/20/25
FROM THE ARC US — This week will be pivotal in our advocacy to protect Medicaid, food assistance, and more. The advocacy of The Arc’s network has prevented some of the worst possible outcomes thus far, but our fight is far from over.
Timing
Late last night, the House Budget Committee passed the budget package. Next, the Rules Committee will prepare the bill for consideration by the full House of Representatives. The Rules Committee is meeting Wednesday at 1am.
We expect the full House of Representatives will vote on the bill later this week, and then the focus will shift to the Senate. It’s going to be a long summer.
The Details
Congressional committees in the House voted last week on the pieces of the budget bill under their jurisdiction. We have compiled a summary of the Medicaid provisions, and brief updates on other actions last week. There will be changes to the bill throughout this week – for instance, the media is reporting to expect that the implementation date for Medicaid work requirements will be sped up.
Energy and Commerce Committee Bill Mark-Up
On Wednesday, May 14th, after 26 hours of debate, the Energy and Commerce Committee passed its portion of the budget reconciliation bill. The Arc of the United States opposes the Medicaid provisions and showed up in force along with other leading disability organizations to support the Medicaid program. Numerous stories of constituents of The Arc were shared by Members of Congress in defense of Medicaid funding. This proposal threatens the health and independence of millions of people, including people with disabilities, pregnant people, children, older adults, and caregivers. If this bill becomes law, states will be forced to make difficult decisions that would threaten essential health and services. An estimated 13.7 million will lose coverage through work requirements, increased eligibility checks, limits on the provider taxes that help states fund their Medicaid programs, and other changes in the bill. Implementing co-pays for the Medicaid expansion population will create hardship for the low-income people receiving health care through the expansion. All amendments proposed by the minority failed along party line votes, including an amendment offered by Representative Debbie Dingell (D-MI) which would have applied a “Maintenance of Effort” provision to HCBS services. This would have prohibited states from cutting HCBS services, eligibility, or rates from current levels. You can watch the hearing here and read the consolidated text here. A sign-on letter from the Consortium for Constituents with Disabilities (CCD) is in the works.
Ways and Means Committee Bill Mark-Up
On Tuesday, May 13, the House Ways and Means Committee marked-up their portion of the budget reconciliation bill. This bill contains the extension of the 2017 tax cuts and includes new tax cuts, a high priority for the Administration and Congress. The bill also contains the Educational Choice for Children Act (ECCA), a $20 billion federal school voucher bill that would divert public money to private schools. The Arc joined with the National Center for Learning Disabilities, the Council for Exceptional Children, and the Center for Learner Equity to oppose its inclusion in the bill. You can read the statement here.
Agriculture Committee Mark-Up
On Wednesday, May 14th, the House Agriculture Committee passed a reconciliation bill along party lines that would slash over $300 billion from the Supplemental Nutrition Assistance Program (SNAP).This represents the biggest cut to SNAP in U.S. history and, for the first time ever, requires states to make up the difference. This cost-shift to states will have a major impact on state budgets and may force states to choose between deep cuts in funding for food assistance, healthcare, or education to make up the difference. It would also end critical eligibility protections for older adults and unmarried parents of children older than 7.
People with disabilities would be disproportionately impacted because it would reduce future benefit amounts, kick millions of people off SNAP, and pressure states to cut funding for SNAP or other programs that people with disabilities need like Medicaid.
Secretary Robert F. Kennedy, Jr. Hearings
On Wednesday, May 14, Secretary Robert F. Kennedy, Jr. testified in front of the House Appropriations Committee in the morning and the Senate HELP Committee in the afternoon. Secretary Kennedy avoided answering questions about the potential restructuring of HHS, citing legal counsel’s advice. Secretary Kennedy reiterated his view that autism is an “epidemic” that must have some environmental cause. When asked questions about vaccines he stated numerous times that the public should not “seek medical advice from him.” You can watch the Senate HELP hearing here.
Autism Roundtable
On Monday, May 12, The Arc helped organize a roundtable of advocates, researchers, and vaccine experts to discuss current issues and anxieties facing the autism community. HHS Secretary Kennedy was invited to the roundtable but did not respond. Mary Lazare, Principal Deputy Administrator of the Administration for Community Living (ACL), was in attendance. Themes that emerged from the roundtable included dangerous rhetoric to proposed and enacted cuts to health and human services programs and cuts to Medicaid in the reconciliation bill. The group also discussed the lack of services for autistic individuals with high support needs, the recognition of communication as a human right, and a call for individuals from the autism community to be engaged and included in research and policy decisions. This roundtable was also co-sponsored by the Autism Society of America, Autistic Self Advocacy Network, Association of University Centers on Disabilities, Autistic People of Color Fund, Autistic Women & Nonbinary Network, American Association of People with Disabilities, and National Association of Councils on Developmental Disabilities. You can read more about the roundtable here: Autism Leaders United in Call for Action Following Roundtable in Washington D.C. – Autistic Self Advocacy Network
Meeting with Governor JB Pritzker (D-IL)
On Monday, May 12, The Arc staff participated in a meeting with Illinois Governor JB Pritzker to discuss issues facing the autism community including cuts to Medicaid and the implications of proposed registries and data collections about autistic individuals.
Next Steps for The Arc’s Network:
- Share our Action Alert far and wide.
- Reach out to the Congressional staff yourselves – now is the time to reach out to those contacts you have bee cultivating to express your grave concerns about cuts to Medicaid and other programs people with disabilities rely on.
- Prepare for next week – Congress will be home on recess as early as May 23, so no matter the outcome of the vote this week, you have a chance to continue educating Members of Congress back home next week.
- Report back on what you learn – contact Kim Musheno (musheno@thearc.org)
Thank you, thank you, thank you for your relentless advocacy. We are making a difference, and we need to keep educating, sharing our stories, and showing the power of The Arc.
Links to Resources on The Arc US Website:
Medicaid-Reconciliation-Summary-5-16.pdf
5/16/25
Preliminary Summary of House Energy and Commerce Committee’s Bill
On May 14, the House Energy and Commerce Committee passed a bill making significant changes to the Medicaid program and the Affordable Care Act. The Congressional Budget Office (CBO) estimates that the bill would decrease the federal deficit by more than the $880 billion over 10 years that was called for by the budget resolution passed by Congress in April. CBO preliminary estimates show that the Medicaid provisions would reduce the deficit by $625 billion over ten years and increase the number of people without health insurance by at least 7.6 million by 2034.
We are also gathering information about provisions affecting the Supplemental Nutrition Assistance Program (SNAP) made by the Agriculture Committee (over $300 Billion) and provisions in the Ways and Means Committee which we will share in the next few days.
Given the critical importance of the Medicaid program to people with disabilities we wanted to share the following outline of provisions in the Committee-passed bill. Tomorrow the Budget Committee is expected to put all of the Committee passed bills into one reconciliation package which will be sent to House floor for a vote as early as next week. There may still be changes before it gets to the full House vote and it is critical that people keep sending messages to protect Medicaid.
Work Requirements
• The mandatory work requirements are more severe than previous federal proposals and are designed to terminate health care for almost 5 million people. Despite claims to the contrary, many of those individuals will be people with disabilities and older adults between the ages of 50 and 65. Many will be workers or people caregiving for people with disabilities. It requires states to condition Medicaid eligibility for “able-bodied” individuals ages 19-64 applying for coverage or enrolled through the ACA expansion group on working or participating in qualifying activities for at least 80 hours per month.
• It mandates that states exempt certain adults from the requirements. Exemptions include individuals who are medically frail or otherwise has special medical needs (as defined by the Secretary), including an individual who is blind or disabled (according to Social Security definition); with a disabling mental disorder; with a physical, intellectual or developmental disability that significantly impairs their ability to perform 1 or more activities of daily living. We know from states that have tried this before that people with intellectual and developmental disabilities get caught up in red tape and the burden imposed on states to administer these requirements. Many family caregivers who receive Medicaid will be subject to work requirements, without the system providing the supports necessary for them to balance work and caregiving.
• Requires states to verify that individuals applying for coverage meet requirements for 1 or more consecutive months preceding the month of application and that individuals who are enrolled meet requirements for 1 or more months between the most recent eligibility redetermination (at least twice per year). These provisions cannot be waived by states.
Effective Date: January 1, 2029
For a great resource on who is actually affected by work requirements see Who’s Affected by Medicaid Work Requirements? It’s Not Who You Think
Cost sharing
• Requires states to impose cost sharing of up to $35 per service on expansion adults with incomes 100-138% FPL; maintains existing exemptions of certain services from cost sharing and limits cost sharing for prescription drugs to nominal amounts.
• Maintains the 5% of family income cap on out-of-pocket costs.
• Imposing cost-sharing on enrollees earning near the poverty level creates significant hardships for individuals struggling to afford basic health care. This proposal is particularly punitive, allowing states to charge over $1,000 annually for those earning just 138% of the federal poverty level, making essential care unaffordable for low-income individuals. Even minimal cost-sharing reduces access to medical services, causing enrollees to delay critical treatments and prescriptions.
Effective Date: October 1, 2028
Eligibility determinations
• Requires states to conduct costly eligibility redeterminations at least every 6 months for Medicaid expansion adults.
• People lose coverage when they miss notifications, steps in the process, or just don’t know that they are up for review. This provision will create gaps in coverage for qualified people and changes the rules that currently require review once a year.
Effective Date: October 1, 2027
State funded coverage of undocumented immigrants
• Reduces the expansion match rate from 90% to 80% for states that use their own funds to provide health coverage or financial assistance to purchase health coverage for individuals who are not lawfully residing in the United States.
Effective Date: October 1, 2027
Eligibility and Enrollment Final Rule
• Delays implementation of both rules until January 1, 2035.
• These two rules finalized during the previous administration collectively reduce barriers to enrollment and modernize renewal policies in the Medicaid, CHIP program, and for individuals dually eligible for Medicaid and Medicare.
Effective Date: Upon enactment.
Provider taxes
• Prohibits states from establishing any new provider taxes or from increasing the rates of existing taxes. This is an effective cut year over year. This does not allow for states to modify their provider taxes to best address their state’s needs, nor does it keep up with inflation. This shift of cost to states over time will force states to cut provider payments and benefits just as a change to the federal match or a per capita cap with a fixed growth rate would.
• Revises the conditions under which states may receive a waiver of the requirement that taxes be broad-based and uniform such that some currently permissible arrangements taxes, such as those on managed care plans, will not be permissible in future years.
• Provision overlaps with a proposed rule released May 12, 2025.
Effective Date: Upon enactment, but states may have at most 3 fiscal years to transition existing arrangements that are no longer permissible.
Taken together these actions will result in people losing health care coverage and states being limited in how they are able to finance their state match for Medicaid. This level of cuts to Medicaid will require states to make difficult choices about their programs. With home and community-based services being “optional” under the Medicaid program, they are likely to look at cutting these optional services. We have seen this in the past when the federal government cut back on its share (see History Repeats? Faced with Medicaid Cuts, States Reduced Support for Older Adults and Disabled People).
For more details and additional resources, see the Kaiser Family Foundation’s full Medicaid provision tracker.
Take Action now to prevent these cuts: https://action.thearc.org/hMKcUkd
5/12/25
From Michigan Department of Health and Human Services — Thank you for your interest in the Special Medicaid Funding Briefing to learn how potential federal cuts to Medicaid funding could impact Michigan residents, providers and community partners across the state.
In response to the high demand for both of the briefing sessions last week, and to make sure as many people as possible are able to receive the information from the briefing, MDHHS updated the Medicaid webpage with materials.
There you will find links to:
- A recording of the briefing session with Meghan Groen, chief deputy director for Health Services and Medicaid director at MDHHS.
- The PowerPoint slides from the briefing session.
- The Executive Directive 2025-3 Medicaid Report prepared by the department and released by Gov. Whitmer.
- Related press releases.
4/17/25
3/21/25
From The Arc Michigan – The Department of Education plays a vital role in ensuring students with disabilities receive the education they deserve. It holds states accountable, funds special education programs, and provides essential resources to families navigating the education system.
But now, the Administration is pushing to dismantle the Department of Education, putting the future of students with disabilities at risk.
Without strong federal oversight and funding, students with disabilities could face fewer supports, unqualified teachers, and reduced access to inclusive education. The consequences are clear: higher rates of poverty, unemployment, and social isolation.
Congress must act to protect the Department of Education and uphold the rights of students with disabilities.
📢 Take action now! Contact your legislators and demand they stand up for students with disabilities.
3/20/25
Medicaid Improper Payments Are Not a Measure of Fraud or Abuse – As Congress considers potential options to reduce Medicaid spending to help pay for extending tax cuts, President Trump and Republican leaders in Congress have suggested that reductions could be achieved by addressing fraud, waste, and abuse.
In a new brief, KFF examines what is known about fraud and abuse in Medicaid, improper payments, ongoing state and federal actions to address program integrity, and efforts to recast some Medicaid issues as waste and abuse.
There are no reliable estimates of fraud in Medicaid. While often cited when discussing fraud, waste and abuse, “improper payments” or error rates are not a measure of fraud or abuse, and are often tied to missing documentation or administrative steps. In 2024, Medicaid paid an estimated 94.9% of total outlays properly, while the improper payment rate was 5.1%.
However, about three-quarters of the improper payments were the result of insufficient documentation or missing administrative steps. Examples include state failure to document beneficiary eligibility or to appropriately screen enrolled providers, or medical records not submitted or missing required documentation to support the medical necessity of a claim.
Medicaid program integrity efforts work to prevent and detect fraud, waste, and abuse, to increase program transparency and accountability, and to recover improperly used funds. Both the federal government and the states are responsible for ensuring program integrity.
3/18/25
The Arc Michigan — From March 11 to March 23, members of Congress will be in their home districts for the district work period.
Medicaid is under threat, and proposed cuts could have a devastating impact for people with disabilities. This program isn’t just healthcare — it’s independence, support, and survival.
While your legislators are home, take action:
📞 Call their district office and tell them to protect Medicaid. Find contact info here.
🏛️ Attend a town hall or community event and ask where they stand.
✍️ Send a message now — they need to hear from you before they head back to D.C.
👉 Sign the petition to show your support!
2/7/2025
Connecting with Members of Congress is an opportunity for people to reach out, connect, and meet with their federal representatives (virtually or in person), regarding Medicaid, while representatives are in their districts. If one of the following is your representative or your organization represents members in one or more districts you’d like to meet with them, please fill out the interest form.
Below, please find the list of representatives:
- Rep. John James (MI-10), Macomb & Oakland
- Rep. Thomas Barrett (MI-7), Lansing, Clinton, Shiawassee, Ingham, Livingston, Eaton, Genesee, and Oakland counties)
- John Moolenar (MI-2), Western Michigan
- Hillary Scholten (MI-3), Grand Rapids, Muskegon, Grand Haven
- Tim Walberg (MI-5), Berrien, Branch, Calhoun, Cass, Hillsdale, Jackson, Kalamazoo, Lenawee, Monroe, St. Joseph
- Lisa McClain (MI-9), Huron, Tuscola, Sanilac, Lapeer, St. Clair, Macomb, Oakland
- Gary Peters (MI-119th)
- Elissa Slotkin (MI-119th), Lansing, Clinton, Shiawassee, Ingham, Livingston, Eaton, Genesee, and Oakland counties
If you’re interested in background materials, an agenda, and/or set up prep meeting time, contact Kathy Mendes at kathy@caringacross.org.
2/7/2025
