04/09/2026
We were told Project 2025 wasn’t something that this administration was implementing.
But here we are.
When we started talking about Project 2025, we kept coming back to the same problem. Families raising children with Down syndrome do not experience federal policy as an abstract argument in Washington. We experience it through an IEP meeting, a doctor's appointment, a Medi-Cal renewal, a therapy authorization, a caregiver who shows up at the house, or a program that helps a child learn how to participate in the community. As Liam's parents, we have learned to pay attention to administrative changes because those changes are often where a family first feels a policy shift.
Project 2025 was not a law. It was an 887-page policy blueprint produced by the Heritage Foundation and dozens of conservative organizations for a future Republican administration. Donald Trump publicly distanced himself from it during the 2024 campaign, but after returning to office in January 2025, his administration began pursuing several of its recommendations.
By August 2026, the clearest examples affecting disability families are Medicaid eligibility and financing changes, the dismantling and redistribution of federal education responsibilities, the attempted rollback of Head Start and changes to federal civil-rights enforcement. We have watched these issues closely because our what is vulnerable and the faster we acknowledge the attempt to harm our community the faster we can defend it.
The Medicaid section of Project 2025 is unusually direct. It calls for work requirements, targeted time limits or lifetime caps on benefits, greater cost sharing for some recipients and major changes to Medicaid financing. It also calls for states to have greater flexibility to redesign long-term-care eligibility, financing and services. For families connected to Down syndrome, that matters because Medicaid is often paying for the things that make community life possible. Personal care, therapies, transportation, home health services, supported employment and other long-term services and supports are provided to people with Down syndrome through Medicaid. As advocates we know the difference between "health insurance" on paper and the collection of services a person actually needs to live a life in the community.
The biggest piece of this has now happened through federal legislation, although it is important to call it what it is. The 2025 reconciliation law, H.R. 1, was not Project 2025 itself. Congress enacted it on July 4, 2025 and it put into federal law a Medicaid work requirement that closely matches one of Project 2025's central recommendations. Beginning January 1, 2027, applicable adults generally must document 80 hours a month of work, community service, job training or education to maintain Medicaid coverage. CMS issued implementation guidance in June 2026. Now, project 2025 hasn’t become law but we see the writing on the wall. It is obvious to everyone that the central Project 2025 Medicaid proposal has been enacted through H.R. 1.
California has become an important protection for many people with Down syndrome. The new federal work requirement does not apply to people who qualify for the disability exemption and California specifically lists people with disabilities among those exempt from its new Medi-Cal work rules. Children, adults 65 and older, pregnant people and people with certain serious health conditions are also excluded. That matters for many families we hear from, but there is a second issue that is easier to miss. The exemption itself has to be established and verified. California says counties may ask for additional information when they cannot verify an exemption through existing data. Parents who have spent years keeping medical records, school records, therapy reports and eligibility paperwork know exactly how different "you qualify" can feel from "the system has verified that you qualify."
California is already preparing for the administrative consequences. The state's Department of Health Care Services estimates that the federal changes could affect up to two million Medi-Cal members and has built an implementation plan around renewals, verification, outreach and preventing people who remain eligible from losing coverage. For the ACA expansion population, California will move from annual to six-month renewals beginning January 1, 2027. People in the aged and disabled Medi-Cal categories are excluded from that particular six-month renewal requirement, but the distinction matters because many families use different Medi-Cal eligibility pathways at different points in a person's life. As parents, we know that a change in a form or renewal schedule is never JUST a form or renewal schedule when a person's health care depends on it.
The part of Medicaid that worries us most is long-term care. Project 2025 proposes changing Medicaid's financing from the current structure toward capped federal funding models, including block grants or per-capita caps. That proposal has not become federal law in the exact form written in the blueprint. But it belongs on the list of policies families should continue watching because the same federal law that created Medicaid work requirements also reduced federal Medicaid spending and placed new restrictions on how states finance the program. The practical question for a family caring for someone with Down syndrome is if the federal contribution becomes less predictable, which service gets harder to find?
Home and community-based services are particularly important here. Medicaid HCBS can pay for personal assistance, case management, employment support, home health services and other supports that allow a disabled person to remain at home instead of entering an institution. Project 2025 explicitly calls for flexibility to redesign long-term-care eligibility, financing and service delivery. That language may sound technical until you picture an adult with Down syndrome who needs help getting dressed, preparing food, taking medication, getting to work or managing a schedule. Those are the details that turn "independent living" from a slogan into a reality.
California has given us another very concrete reason to watch this area. In July 2026, DHCS said CMS had deferred another $646.4 million in federal funds connected to California's in-home care system, bringing the total federal deferrals to $1.7 billion. DHCS specifically said the affected system serves children and adults with significant disabilities and seniors who depend on in-home care to remain safely at home. California estimates that one year of in-home care costs roughly $100,000 less per person than nursing-facility care. With such a cost-effective system, we really wonder the motivation of implementing such horrific cuts to the system. It hits home on our community because the policy debate can become very theoretical until someone has to decide whether a person can continue living at home.
Now what about Special education? Project 2025 proposed eliminating the Department of Education and moving many of its functions elsewhere. For special education, its education chapter proposed converting most IDEA funding into a "no-strings" formula block grant directed to local education agencies through HHS's Administration for Community Living. IDEA currently establishes federal requirements around the education of students with disabilities, including the right to a free appropriate public education (FAPE). We have spent years listening to parents and educators describe what happens when an IEP is working and what happens when it isn't, so the phrase "no strings" does not sound administrative to us. The strings are the accountability mechanisms families use when a school fails to provide what a child's IEP requires.
The Department of Education has now been substantially dismantled, even though Congress has not formally abolished the department as a statutory agency. The administration has moved toward transferring major responsibilities to other departments, including moving special education functions toward HHS and shifting education civil-rights enforcement toward the Department of Justice. The Associated Press reported in June 2026 that the administration was accelerating those transfers and that the Office of Special Education and Rehabilitative Services and the Office for Civil Rights were among the functions affected. For a family like ours, the question is not whether HHS can physically administer a program. The question is whether the people enforcing special education law remain close enough to education to understand why an IEP, a related service or a placement decision matters to a child with Down syndrome.
There is a point of nuance here that we do not want to lose. Lindsey Burke, who wrote the education chapter of Project 2025 and later became a senior Education Department official, said in January 2026 that special education funding and protections would remain. That means the most alarming version of the Project 2025 IDEA proposal has not simply appeared overnight as a new federal law. At the same time, the administrative structure that has historically housed IDEA oversight is being dismantled and redistributed. As parents, we are less interested in winning an argument about whether a program technically still exists than in knowing who answers the phone when a parent says, "My child is not receiving the service written into the IEP."
Head Start is another place where the blueprint is easy to recognize. Project 2025 explicitly called for eliminating Head Start. The proposal was not hidden in a footnote. It appears in the HHS chapter under the Office of Head Start and calls for eliminating the program and the office that administers it. Head Start matters to disability families because early childhood programs are often where developmental concerns are identified, families are connected to services and children with disabilities receive support before they enter elementary school. We know all too well how much early information changes a family's ability to make decisions and that is why we pay attention to programs that sit between a diagnosis and a child's first years of school.
Head Start has not simply disappeared. Instead, the administration has pursued a regulatory strategy that could substantially reduce the program's requirements and protections. In August 2026, reporting described proposed changes that would remove or weaken requirements involving teacher-to-child ratios, disability services, teacher qualifications and other program standards. The same reporting noted that court action has prevented the administration from simply eliminating Head Start as Project 2025 proposed. For parents of children with Down syndrome, the disability-services requirement is the part we would circle in red. A preschool program that technically remains open can still be a very different program if the requirements that made it accessible to children with disabilities are removed.
And then there is the attack on civil rights. Project 2025 also proposed ending the federal government's use of disparate-impact theories in civil rights enforcement. That is broader than Down syndrome, but it reaches disability because federal civil rights enforcement can affect education, employment, housing and access to federally funded programs. The administration has moved in this direction by reducing or rescinding certain disparate-impact rules and by changing how federal agencies approach civil rights enforcement. We have learned o. This journey that rights written on paper are only useful when there is a practical way to enforce them.
This matters in schools because families do not always have the money, time and expertise to turn every disagreement into a lawsuit. A federal complaint process can give a parent somewhere to go when the problem is bigger than one teacher or one administrator. The Project 2025 education chapter proposed moving the Education Department's Office for Civil Rights to the Department of Justice, while the administration has now been restructuring federal education civil rights responsibilities. When we talk about inclusion, we are talking about children like our son Liam being treated as students first, with the supports that allow them to belong in the same classrooms and communities as everyone else.
For us, this comes back to one of the reasons why we started IF WE KNEW THEN in the first place. Raising Liam changed the questions we ask. A policy that sounds like "administrative flexibility" makes us ask who gets to decide. A Medicaid change makes us ask who provides the care when the authorized hours disappear. A special-education change makes us ask who a parent calls when an IEP is not being followed. A Head Start change makes us ask what happens to the child who needs developmental support before kindergarten. Those questions come from sitting on the parent side of the table and from the conversations we have had with other families.
We do not know exactly how every provision still on the Project 2025 agenda will play out. Nobody does. What we do know is that several of the policies that sounded theoretical in 2024 are now federal requirements, agency restructuring plans or active regulatory changes in 2026. For parents of children with Down syndrome, that is enough reason to pay attention before the change reaches the mailbox or the school meeting. That is also the lesson we wish we had understood earlier as Liam's parents.
The most consequential decisions are often made long before a family sees the consequences in its own living room.
KEEP ADVOCATING!
