Casey Barrett is 43 years old. His 15-year-old daughter Olivia has an extremely rare genetic disorder and requires round-the-clock care. Until this year, Colorado's Medicaid waiver program paid him for over 100 hours a week as her primary caregiver. That income kept the family housed and fed in Westminster.

On July 1, 2026, his hours drop to 84. On January 1, 2027, they drop to 70. By July 1, 2027, they'll be capped at 56 hours a week. Barrett told KUNC that the cuts will eliminate more than half his income. "The finances that we would need to just maintain would be gone."

Colorado is the first state to publish an exact timeline for caregiver hour reductions. Ohio and Pennsylvania have signaled similar cuts are coming by mid-2026. Indiana is following. This isn't a local budget problem. It's the result of the federal Medicaid cuts in HR 1, the "One Big Beautiful Bill Act," which reduced federal funding for Medicaid by shifting more costs to states. Because home and community-based services are optional under federal law, they're the first thing states cut when federal funding falls.

If your family member receives Medicaid-funded home care through a waiver program, here's what you need to know and what you can do right now.

Why States Are Cutting Home Care First

Medicaid is jointly funded by states and the federal government. When federal funding drops, states face a gap they have to fill with their own budgets or close by cutting services. HR 1 reduced the federal match rate for Medicaid, which means states now have to spend more of their own money to keep the same level of services running.

Home and community-based services (the programs that pay family caregivers, fund day programs, cover personal care attendants, and support people with disabilities living at home) are optional under federal Medicaid law. That means states aren't required to offer them. States are required to cover nursing home care and institutional settings, but not the community-based alternatives that keep people at home.

When federal funding falls, HCBS programs are the first to get cut because they're discretionary. Zoe Gross of the Autistic Self Advocacy Network told the Center for American Progress: "Because states are not required to provide these services to everyone who needs them, states faced with a huge loss of federal funding for Medicaid will cut HCBS first."

When federal Medicaid funding dropped after the 2011–2012 FMAP expiration, every state cut HCBS programs. Colorado's cuts are the expected response to a federal funding gap, not an outlier.

Colorado's Timeline: What's Happening and When

Colorado's Department of Health Care Policy and Financing is implementing paid family caregiver hour caps in three phases:

• July 1, 2026: Hours capped at 84 per week
• January 1, 2027: Hours capped at 70 per week
• July 1, 2027: Hours capped at 56 per week

These caps apply to family members who are paid caregivers through Colorado's Medicaid waiver programs. Colorado HCPF pays approximately $20 per hour for caregiver services. A family losing 50 hours a week is losing $1,000 a week in income, or $52,000 a year.

The state has created an exceptions process for families who meet specific criteria: linguistic or cultural barriers that make it difficult to hire outside caregivers, or rare diagnoses with severe illness risk where continuity of care is medically necessary. Exceptions must be requested through your caseworker and will be reviewed individually.

At a committee hearing on the cuts, Kathy Fieber, mother of an adult son with Down syndrome and autism, wore a t-shirt that said "Cut Costs, Not Care." She told lawmakers: "It's really gonna hurt a lot of people."

What Other States Are Doing

Ohio and Indiana have signaled rate cuts of 3–7% for HCBS providers by mid-2026. Pennsylvania is targeting reductions by mid-2026, with a specific focus on transition-age youth and employment services.

If you're in one of these states and your family member receives Medicaid-funded home care, you may not have an exact timeline yet, but the cuts are coming. Contact your state Medicaid office or your caseworker to ask when reductions will take effect and whether your state has an exceptions process.

What Families Can Do Right Now

The cuts are happening. The timeline is set. But there are specific steps you can take to protect your family's access to care and income.

1. Apply for the exceptions process early if you qualify.

If your family member has a rare diagnosis with severe medical risk, if there are linguistic or cultural barriers that make hiring outside help difficult, or if continuity of care is medically necessary, request an exception now. Don't wait until the first cut takes effect. Caseworkers will be flooded with requests once the July deadline approaches. Get your application in early so it can be reviewed before the cuts start.

2. Confirm your enrollment is current and your caseworker has your updated contact information.

If your Medicaid enrollment lapses or your contact information is outdated, you won't receive notices about the cuts or the exceptions process. Log into your state Medicaid portal or call your caseworker to confirm everything is current. If you've moved, changed phone numbers, or switched email addresses in the last year, update that information now.

3. Document everything you're already doing.

If you're a family caregiver who will be affected by the hour caps, start documenting the care you're providing now. Keep a log of what you do each day, how many hours you spend, and what would happen if that care wasn't available. This documentation will support your exception request if you file one, and it will be useful if you need to appeal a denial or advocate for policy changes later.

4. Contact your state legislator.

Colorado's cuts are being implemented because the state has to balance a budget gap caused by the federal Medicaid funding reductions. State legislators didn't create this problem, but they control how the state responds to it. Call or email your state representative and senator. Tell them you're a constituent whose family is affected by the caregiver hour cuts. Ask them to advocate for additional state funding to restore HCBS programs or to create a broader exceptions process that protects families who can't hire outside help.

Why This Is Happening to HCBS

Four million people across the United States rely on Medicaid-funded home and community-based services. More than 700,000 are already on waiver waiting lists, according to KFF. HCBS programs make it possible for people with disabilities to live at home instead of in institutions.

Institutionalization costs the government far more than home care. HCBS costs an average of $36,275 per person per year. Institutional care for someone with intellectual or developmental disabilities costs around $400,000 per year. A California analysis found that cutting HCBS would increase Medi-Cal spending by $57 million in the first year and $1.2 billion between 2026 and 2030.

But because HCBS is optional under federal law and institutional care is required, states cut the cheaper, more humane option first. A letter signed by more than 1,100 organizations and sent to senators earlier this year noted that 86% of optional Medicaid spending goes to services for people with disabilities and older adults.

Where to Get Help

If you need help navigating the exceptions process, understanding your state's timeline, or appealing a denial, contact:

• Your caseworker: They're your first point of contact for exceptions applications and enrollment verification.
• Your state Medicaid office: They can clarify timelines and eligibility for exceptions.
• Disability Rights Colorado or your state's disability rights organization: These legal advocacy organizations can help you understand your rights, file appeals, and navigate the system. Find your state's Protection & Advocacy agency at NDRN.org.

Colorado's timeline is the first detailed caregiver hour-cut schedule in the country. Families in Ohio, Indiana, and Pennsylvania should expect similar announcements soon. The cuts aren't happening because states want to reduce services. They're happening because the federal funding that made those services possible is gone, and HCBS programs are the first thing states are allowed to cut.

If your family depends on Medicaid-funded home care, act now. Confirm your enrollment. Request exceptions if you qualify. Document your care. Contact your legislators. The system is shrinking, and the families who move first will have the most options.