You opened the envelope. Your child's in-home care hours are being reduced by 40%. Or the managed care organization is terminating private duty nursing. Or the personal care services your family has relied on for years are being cut to a level that doesn't cover what your child needs.

This is happening to families across multiple states right now. Idaho's governor has proposed dissolving in-home private duty nursing programs entirely. An Iowa family learned their adult son's in-home caregiver hours would be cut by nearly 40%. Missouri is proposing $80.7 million in cuts to services for people with disabilities. Colorado paused a proposed pay cut for family caregivers only after hours of public testimony.

If you just received a notice, or you're waiting for one, here is what you need to know about your rights and what to do next.

What Triggers a Cut Notice

Medicaid cuts to home and community-based services (HCBS) can come from state budget decisions or from managed care organizations (MCOs) that administer Medicaid in many states. The notice may say your child's authorized hours are being reduced, a service is being terminated, or coverage is being suspended.

Federal rules require that you receive advance notice before services are reduced or stopped. In most states, that means at least 10 days, though many states provide 30 days or more. The notice must explain what is changing, when it takes effect, and your right to appeal.

If you did not receive written notice, or if the notice does not explain the reason for the cut, that is a violation of federal Medicaid rules. Document it.

Your Legal Rights Under Federal Law

Two federal protections matter here.

Olmstead versus LC (1999) is a United States Supreme Court decision establishing the right of people with disabilities to live in the least restrictive setting appropriate for their needs. When states cut HCBS, they force families toward institutional care, which violates Olmstead. Disability rights organizations have successfully sued states on these grounds multiple times.

Fair hearing rights are guaranteed under federal Medicaid law. When Medicaid reduces, terminates, or suspends services, you have the right to request an administrative hearing. This is not optional for the state to offer. It is your right.

What to Do in the Next 48 Hours

1. Request a fair hearing in writing.

You typically have 30 days from the date of the notice to request a hearing, though some states allow up to 90 days. Do not wait. Send your request in writing, by certified mail if possible, to the address listed on your notice. Many states also allow online submission.

Your request does not need to be formal. A simple statement works: "I am requesting a fair hearing to appeal the reduction in [service name] for [child's name], Medicaid ID [number]. I received notice on [date]."

2. Request aid pending.

This is the most important step many families do not know about. When you request a fair hearing, you can also request that services continue at the current level while your appeal is pending. This is called "aid pending."

You must request this at the same time you request the hearing, or within 10 days of the notice date in most states. Include it in your written request: "I am also requesting continuation of benefits at the current level while my appeal is pending."

If approved, your child's services will not be reduced until after the hearing decision.

3. Document everything.

Keep copies of all notices, your written request for a hearing, certified mail receipts, and any communication with the MCO or state Medicaid office. If you speak to anyone by phone, write down the date, time, name of the person you spoke with, and what was said.

If your child's care needs have increased or stayed the same, gather documentation: recent evaluations, care plans, physician notes, therapy reports. The hearing will require evidence that the current level of service is medically necessary.

Where to Get Free Legal Help

Every state has a federally funded Protection and Advocacy (P&A) organization that provides free legal services to people with disabilities. These organizations are required by federal law to assist Medicaid recipients with appeals.

You can find your state P&A organization at acl.gov or by calling the national disability rights hotline.

Other legal resources include:

• Disability Rights Advocates (dralegal.org)
• Disability Rights Education & Defense Fund (dredf.org)
• The Arc (thearc.org): many local chapters offer advocacy support
• Bazelon Center for Mental Health Law (bazelon.org)

Many of these organizations have taken on Olmstead cases against states cutting HCBS. They know this area of law well.

What Happens at a Fair Hearing

A fair hearing is an administrative proceeding, not a courtroom trial. It is typically conducted by an administrative law judge, either in person, by phone, or by video. You have the right to bring a representative, including a lawyer or advocate from a P&A organization.

The state or MCO must prove that the reduction in services is appropriate. You will have the opportunity to present evidence that the current level of service is medically necessary. Bring any documentation you have: care plans, physician statements, evaluations, and a written summary of your child's care needs and how the cut would affect daily life.

Hearing timelines vary by state, but most states are required to issue a decision within 90 days of your request.

If you win, services are restored. If you lose, you may have the right to further appeal in state court, and many families have pursued that route successfully with help from disability rights organizations.

What to Do While You Wait

If your request for aid pending is denied, or if you did not request it in time, you may face a gap in services while waiting for the hearing decision.

Contact your state's Aging and Disability Resource Center (ADRC) to ask about emergency or respite services. Some states offer short-term support while appeals are pending.

If your child's care needs are not being met and it creates a health or safety risk, document it. Take notes, take photos if relevant, and keep a daily log. This documentation may be critical for your hearing and for any further legal action.

Reach out to local disability advocacy groups. Many families going through this right now are organizing, sharing information, and supporting each other. You are not the first family in your state to fight this, and you are not alone.

The Bigger Picture

What is happening right now in Idaho, Iowa, Missouri, and Colorado is not an isolated event. The One Big Beautiful Bill Act set in motion federal Medicaid reductions of roughly $1 trillion over 10 years. HCBS are classified as optional services under federal Medicaid law, which means they are often the first to be cut when states face budget pressure.

Advocates have been clear: "Optional programs are what get cut first."

But families are fighting back. Over 500 people attended a state capitol town hall in Idaho opposing the cuts. Colorado lawmakers paused their proposed caregiver pay cut after sustained public testimony. Disability rights organizations are preparing Olmstead lawsuits in multiple states.

Your individual appeal matters for your family. It also matters as part of a larger record of how these cuts affect real people. State and federal policymakers are watching.

If you received a notice, request a fair hearing and aid pending, get legal help, document everything, and know that the law is on your side.