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.

In this issue of infoNET, we will cover some “big” things happening in Washington, D.C. with Congress and the federal budget. You probably have already heard about the "One Big Beautiful Bill" Act (or OBBB) that was signed into law on July 4th, 2025. What you may not know is that this is one of two big bills that will decide how much the government spends.

The OBBB Act was an optional bill that Congress passed to keep certain tax cuts and make other budget cuts to pay for those tax cuts. Passing this bill was a choice - it was not something that Congress was required to do.  The second bill, which is being debated now, is the federal budget that Congress must pass every year. Here’s the difference between the two bills:

Budget Reconcilitation: This was the OBBB Act and it has been signed into law. This bill only deals with changes to mandatory spending. Mandatory spending is mostly used for social programs like Social Security, Medicare, Medicaid, and SNAP (food assistance). This spending is required by laws already passed by Congress. Social Security is the only mandatory program whose funding cannot be touched in reconciliation. While Congress does not have direct control over this spending, it can make changes to try to balance the budget and reduce the federal deficit. We’ll talk more about this in the next article.

Budget Appropriation:  Congress will now turn its attention to the appropriations process, which covers discretionary spending. Unlike mandatory spending, discretionary spending needs annual approval by Congress. Congress will be putting together a budget for the federal fiscal fiscal year 2026, or what they call FFY26. The federal fiscal year will begin on October 1, 2025 and go through September 30, 2026. Congress may or may not take the President’s budget recommendations. This “discretionary spending” matters to people with disabilities and their families because it funds disability-related programs and services like:

• Developmental Disability Councils (including the Iowa DD Council)
• University Centers for Excellence in Developmental Disabilities (including Iowa’s UCEDD)
• Protection and advocacy organizations (including Disability Rights Iowa)
• Independent living centers
• Civil rights protection work
• Accessibility and accommodations work
• Housing (including Section 8)
• Transportation
• Many other programs that support adults and children with disabilities

You will start to see more action items coming on the budget. Currently the President’s budget cuts disability rights funding in half, eliminates funding

for the UCEDD, and makes no change in funding for DD Councils. Congress rarely accepts the President’s budget without changes, and the final budget is their job. Look for action alerts, as this process will start to pick up again after the August recess. In August, your federal elected officials are back in the state. It is a good time to catch them at public appearances, such as county fairs, the State Fair, parades, and other places where you can ask questions!

What the OBBB Act Means to People with Disabilities

While its supporters say this bill is a major achievement, the “One Big Beautiful Bill”(OBBB) could do real harm to people with disabilities. Despite promises of progress, the bill falls short of protecting and supporting people with disabilities and others on Medicaid. Currently more than 700,000 Iowans rely on Medicaid for their health care and daily support, including 90,000 people with disabilities. The biggest impact is on Medicaid - the main way many people with disabilities get health care and support services. Here’s how that could impact you:

• Increases the number of eligibility redeterminations to at least 2 per year. This means Medicaid members will have to fill out more paperwork more frequently to prove that they need Medicaid. It also creates an opportunity for more “churn,” which is when people lose Medicaid and have to start the enrollment process again. Right now eligibility is determined once a year. This change could result in service interruptions and hit those with fluctuating incomes or complex documentation needs the most. It also adds a lot more administrative cost to Medicaid agencies, money that could be used to support more people in their communities. The change from annual to six-month redetermination evaluations will begin December 31, 2026.

• Adds new 80-hour/month work requirements to some people on Medicaid (expansion population). Iowa passed a similar requirement for people getting health care through the Iowa Health and Wellness Plan, which is what we call the program for the expansion population. Neither of these bills includes work requirements for those on waivers or receiving regular Medicaid - only those in the expansion population (low income adults that became eligible for Medicaid under the Affordable Care Act). Iowa’s work requirement law is more strict than the federal one, since the federal law allows for going to school or volunteering in the community to count toward “work.” The federal bill also changes cost-sharing, meaning people in this Medicaid population may end up having to pay more for their services.  States must meet this new requirement by December 31, 2026 (but they can start it earlier)

• Adds restrictions to home and community-based services (HCBS), which help people live in the community or at home, instead of in institutions. The wording in this section is unclear, but states could start limiting the number of waiver slots (and increasing waiting lists). States could also narrow the scope of services (including fewer hours for personal care or cuts to employment supports). The federal match rates could be reduced, requiring states to cover a larger share of these costs. These changes could make it harder for people with mild to moderate disabilities to receive supports that help them live independently.

• Stops CMS’s proposed nursing home staffing rules, which will impact those living in nursing home settings. These rules were drafted to make sure quality care is provided to the people living in these facilities and reduce risk for waste, fraud and abuse. Congress estimates that 1 in 4 individuals who live in nursing homes will be displaced because of OBBB. There will also be an increased risk of abuse and fraud by failing to address staffing shortages.

• Less flexibility for states applying for demonstration waivers. Rules on Medicaid waiver “demonstration projects” (formally called section 1115 waivers) were tightened in the bill. These demonstration projects let states try out new approaches to service delivery, but require a lot of reporting to make sure there is a focus on outcomes. For instance, if Iowa were to try out a new "Work Without Worry" program, they might use this type of waiver to try it out.  The OBBB is actually against trying new ways to improve services for people with disabilities, so this could make it harder to enact creative new approaches to supporting Iowans with disabilities.

• Makes it harder for people to receive food assistance under the Supplemental Nutrition Assistance Program, or SNAP. This program helps lower income people and seniors pay for important programs. The SNAP cuts will not happen until October 1, 2026 (one year away). The OBBB makes the biggest cuts to Medicaid in history. While we do not know yet how Iowa will react to these changes, we expect funding cuts will lead to:

• Making it harder to get or keep Medicaid.
• Longer waiting lists for services.
• Lower pay for caregivers (making it harder to find help).
• More people being forced into institutions or going without care altogether.
• More paperwork to prove you need Medicaid.
• More cost to administer for state programs.
• Less accountability.
• Increasing food insecurity–people will go hungry.
  

TAKE ACTION: What People Can Do At State Level

Even though the bill is now law, states will decide how much harm it causes— or how much they can limit the damage. Here’s what people can do now:

• Demand open communication. Ask Iowa Medicaid how they are using funds. Push for public hearings and clear plans.

• Contact State Legislators. Urge them not to adopt harmful changes, like block grants, spending caps, or benefit cuts. 

• Watch for Waivers - or exceptions to policies. States may try to use waivers or exceptions to cut services quietly. We are already hearing that Iowa is allowing fewer exceptions to policy in order to receive the services they need, even before the bill passed in Congress. Stay alert and speak up during public comment periods.

• Advocate Locally! Partner with others. Look for other disability organizations and advocates to coordinate messages. We all need to work as a community to fight back.

• Tell the Truth. Share your real experiences. If this bill has made your life harder—or if you’re worried it will—tell your lawmakers (all of them – Congress and state legislators), tell the media, and share your experience with advocacy groups like the Iowa DD Council. Make sure you document any changes that happen because of this bill. Get a notebook and track it so you have proof.

The Bottom Line: Despite how it’s being marketed, the OBBB is not a win for people with disabilities. It opens the door to cuts, restrictions, and rollbacks that threaten independence, access, and basic dignity. The fight now moves to the state level—where your voice can still make a difference.  You can use our Take Action Center to email your federal and state elected officials.

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