NEWSLETTER

infoNET NEWSLETTER

The infoNET Newsletter helps advocates with disabilities stay up to date on current issues in the Legislature, the governor’s office, and U.S. Congress. It also provides information on how to be a more effective advocate, how to connect with other advocates, and when there are opportunities to bring your issue to the attention of lawmakers and opinion leaders.

This newsletter is published quarterly. For more current information, check out our weekly reports during the legislative session and breaking news.

If you feel like there is a lot to take action on these days, that’s by design. The Trump Administration has publicly said it is using a “Flood the Zone” strategy.  "Flood the Zone" means doing a lot of things all at once so that people can’t focus on or  advocate for any one thing. It’s like making so much noise that people can’t hear what really matters. By making a lot of rule changes, signing dozens of executive orders, and pushing the limits on what is legal all at the same time, it becomes really hard for advocates and the public to speak up. 

Across the country, disability services and civil rights protections are facing serious threats at the federal level. From proposed funding cuts to court challenges that could roll back decades of progress, it’s a critical time to stay informed, organize, and take action.

Here’s what you need to know—and what you can do.  We hope this makes it a bit easier to focus on the things that matter most to you.

Between legislative sessions we reach out to advocates to listen and learn about what changes you would like to see in Iowa. Our Council members and staff then develop our public policy priorities based on your needs, your suggestions and the current challenges facing Iowans with disabilities.

This means that our policy work and your advocacy work is not just a January to May job – it is year round.  In fact, it is equally if not more important to contact your legislators during the summer and fall as much as it is during the legislative session. During this time they are also listening to their constituents (you), gathering information and considering what legislation they might propose in the next session. When you meet or contact your legislators during this time, they may have more time to listen to your story and consider whether the changes you want to see could be made into a bill in the next legislative session. 

Let’s not forget our members of Congress – those folks we elect to go to Washington, D.C. to represent Iowa at the Federal level. Our Senators Chuck Grassley and Joni Ernst, and Representatives Randy Feenstra, Ashley Hinson, Mariannette Miller-Meeks and Zach Nunn work year round too. They spend most of their time in the nation’s capital but return to Iowa regularly to meet with constituents and work in their district offices.

As you may have already read here in infoNet, the last few months have been full of proposed changes to Federal law and Federal agencies that could have a big impact on Iowans with disabilities. So if you’re used to setting aside your advocacy t-shirt until in May until next state legislative session, think again! This year it is more important than ever to be in contact with our members of Congress. The proposed changes could be drastic to Medicaid, education and programs that have a positive impact on people with disabilities. 

The legislative session may be done for 2025, but our work goes on in other ways and yours should too.  I hope you will consider the issues outlined in this newsletter and contact our Senators Grassley and Ernst and your member of Congress in the House and make your voice heard. At the Iowa DD Council, we may work year round on advocacy. But it is YOUR VOICE and YOUR STORY that makes the difference. Please use your voice this summer and fall and let us know how we can help.

EDUCATION: Section 504 Protections Under Attack

A recent court case is challenging the enforcement of Section 504 of the Rehabilitation Act, the landmark law that says schools and other places that get federal money cannot discriminate against people with disabilities. The outcome could limit the federal government’s authority to enforce accessibility requirements in schools, health care, housing, and transportation. 

Seventeen states (including Iowa) signed on to this lawsuit, asking the courts to rule Section 504 is unconstitutional. The Disability Rights and Education Defense Fund has been watching this court case closely. 

More than 300 Iowans have sent emails through our Take Action Center to ask Iowa Attorney General Brenna Bird to drop out of the lawsuit.  As of mid-April the states have backed off the push to declare Section 504 unconstitutional. Instead they are focusing on changing the Biden Administration’s updated rules.  These rules modernize Section 504 guidance and were developed with input from the disability community.

EDUCATION: Eliminating the US Department of Education

President Trump signed an executive order on March 20 to eliminate the US Department of Education. One of the most important jobs of this Department is to make sure schools follow the law, including laws that protect students with disabilities. While states may have dropped their request to declare Section 504 unconstitutional, it will not matter if no one is enforcing those laws. 

The US Department of Education was created in 1979 to make sure equal educational opportunities were available to all students, especially those with disabilities. Since the Department was created by Congress, it takes an act of Congress to eliminate it.  That is why a judge ruled on May 21 that the President did not have the authority to eliminate the Department of Education through executive order. 

The President also ordered a ‘reduction in force’ (or RIF) at the Department.  That means thousands of people lost their jobs after the March executive order was signed. In fact, two out of every three department employees lost their jobs, including staff attorneys who defend the rights of students with disabilities. Education Secretary Linda McMahon also stopped funding and contracts for special education research, workforce development, and other student services. The judge’s ruling also said these jobs need to be reinstated, but many wonder if these former federal workers will want to return. 

EDUCATION: Special Education Funding At Risk

Congress is also considering big budget cuts to special education services. These cuts would mean fewer resources for classrooms, therapists, and support personnel. Following the Individuals with Disabilities Education Act (IDEA) depends on funding from Congress. Schools are already operating with flat or reduced funding due to the “continuing resolutions” that have funded our federal government over the past decade. The Trump Administration has proposed a 15% cut ($15 billion) to the US Department of Education.  Cuts to vocational rehabilitation services are also possible, as it is funded through the US Department of Education. Iowa’s vocational rehabilitation program receives a majority of its funding from the federal government through the US Department of Education. These services put people with disabilities to work through job development and training starting with transition programs in high school.

Bottom line for Education:
These changes could make it harder for students with disabilities
to get the support and equal access they are legally promised.

MEDICAID: Federal HHS Changes Could Hurt Disability Services

The U.S. Department of Health and Human Services (HHS) has introduced a plan to restructure Medicaid, shifting more control to states. While presented as a cost-saving measure, this approach would likely reduce coverage and services for people with disabilities. This puts home and community based services (HCBS) at risk.

The Administration for Community Living (ACL), the federal agency that funds disability and aging services, has been targeted for elimination. The ACL oversees critical programs like state developmental disabilities councils (including the Iowa DD Council), disability rights organizations (including Disability Rights Iowa), university centers for excellence in developmental disabilities (including the University of Iowa UCEDD), independent living centers, and family caregiver support. If eliminated, states would lose coordinated federal support for community integration, self-advocacy, and systems change efforts.

According to the US Department of Health and Human Services, the restructuring will eliminate thousands of employees including those with expertise on disability and aging. It also creates additional bureaucracy by spreading these programs among several other agencies, including Administration for Children and Families (ACF), Office of the Assistant Secretary for Planning & Evaluation (ASPE), and the Centers for Medicare and Medicaid Services (CMS).   The ACL and the programs it oversees were set up to improve the systems that help people with disabilities and aging Americans. The ACL advocates for people with disabilities to make sure they get the services they need and have their rights protected. Thanks to the ACL and Medicaid changes over the last 30 years, the number of people with intellectual and developmental disabilities (ID/DD) moving from state-run institutions to community living went from 194,650 people to 18,807 people.

MEDICAID: Congress Working on Big Changes

Many people with disabilities depend on Medicaid for health insurance,  care, personal care attendants, and help living independently. In fact, one in five Americans relies on Medicaid for their health care needs. The President's proposed budget is now being considered by Congress. This budget, which has already passed the US House of Representatives, includes big cuts to Medicaid. Iowa is expected to lose as much as $713 million over the next ten years. This means:

• Fewer people will be covered by Medicaid for health insurance.
• Fewer services may be covered.
• People might lose access to home care.
• People may need to move into institutions because community services are not available.
• People may need to wait longer to get approved for a waiver or receive waiver services.

This would be a step backwards. Many disability rights advocates have fought for years to help people live in their own homes— rather than in nursing homes or institutions.  Medicaid, particularly the “optional” waiver services, helps them do this.  You can see the shift away from institutional care in the chart above; this shows the progress Congress and various Presidents have made over the years to move toward community living.  That progress could be erased if Congress acts on these changes to Medicaid.

On May 22, the US House of Representatives passed President Trump’s “One Big Beautiful Bill,” Act which includes big changes to Medicaid and more than $600 billion in funding cuts.  The Congressional Budget Office estimates that 7.6 million Americans will lose Medicaid coverage if this bill becomes law. That means 7.6 million Americans will become uninsured. It is important to note that these changes apply mostly to the people who became eligible for a slimmed-down version of Medicaid under the Affordable Care Act.  This is often called the Medicaid “expansion population,” which includes adults up to age 64 whose income is at or below 133% of the federal poverty level. For a two-person family, that is just $28,130/year (or $2,344/month).  If passed, the "One Big Beautiful Bill" will:

• Require covered individuals work, volunteer, or go to school at least 80 hours/month beginning in 2026. The Iowa Legislature passed an identical requirement this year for our state's expansion population (Iowa Health & Wellness Plan), with exceptions for some caregivers and individuals who meet the SSA criteria for disability. Half of the expected “Medicaid savings” comes from the work reporting requirement, meaning these individuals will lose Medicaid coverage.
  
  
• Lower federal Medicaid match rate.  The Federal government pays for 90% of the cost for the expansion population. Lowering this match rate would mean Iowa taxpayers would have to pick up the extra cost (or end coverage for the 182,000 Iowans that are covered by the Iowa Health & Wellness Plan). Iowa’s regular match rate is just over 64%, so the impact on our state budget would be dramatic.
  
  
• Require up to $35 as copay for services. Currently Iowa Health & Wellness Plan members do not have copays but may be required to pay up to $10 per month, depending on their income. Adding a $35 copay to each appointment may make health care unaffordable to these low income families.
  
  
• More frequent eligibility checks. Many advocates wonder how this will save money, since it dramatically increases administrative costs. Under current law, states with an expansion population (like Iowa) must check eligibility every 12 months. The bill passed by the US House requires checks every six months, beginning October 1, 2027. More frequent redeterminations would increase rates of Medicaid churn (losing coverage, then reapplying within a short time), which reduces access to care, adds paperwork hassles, and increases administrative costs for state Medicaid agencies, health plans, and providers.
  
  

Overall the Medicaid cuts are supposed to save $625 billion. Joan Alker, Director of Georgetown University’s Center for Children and Families, cut to the chase. “There are very big cuts to Medicaid here, and states will not have any good choices to make up these lost federal funds. States have to either raise taxes, cut people off, or restrict access and benefits.”  States will have to choose how to make up for the lost federal funds - cut services, reduce funding to other Medicaid programs, or simply eliminate the expansion population coverage. For this reason, the loss of federal funds from these “expansion population” changes could bleed over into other Medicaid programs, which are already underfunded. 

For people with disabilities, Medicaid is far more than traditional health care. It covers supports that private insurance and Medicare do not, including:

• Personal care attendants
• Nursing services
• Respite for family caregivers
• Supported employment
• Housing-related services
• Medical transportation
• Therapies for children and adults

These services are often what make it possible for people with disabilities to live in their own homes instead of institutions, go to school, work in the community, and participate in public life. In Iowa, nearly 20% of the state’s population relies on Medicaid, including more than 80,000 Iowans with disabilities. The state already faces challenges with managed care, long waitlists for waiver services, and workforce shortages. Any federal cuts or limitations would strain the system further.

Rural areas, in particular, would be hard hit, as local providers depend on Medicaid reimbursement to stay in business. The loss or reduction of home and community based services (HCBS) funding could lead to increased institutionalization, family burnout, and reduced independence for thousands of Iowans.

TIME FOR ACTION! What Can You Do?