What You Can Do if You Receive a Medicaid HCBS Notice

Takeaways

• Federal oversight of Medicaid home- and community-based services (HCBS) is loosening, giving states more room to change services, although the underlying laws haven't changed.

• If you get a notice stating that HCBS for you or your loved one are changing, watch for two deadlines: one to keep services running, and one to appeal.

For millions of families, Medicaid home- and community-based services (HCBS) make it possible for a loved one with a disability to live at home instead of in an institution. These supports can include personal care aides, day programs, and supported employment. 

People with disabilities have access to HCBS because of a decades-old legal principle outlined by the Supreme Court in 1999. Known as the Olmstead decision, it states that people with disabilities generally have the right to receive services in the most integrated setting appropriate to their needs, rather than being confined to an institution.

That principle now faces uncertainty. In July 2026, the U.S. Department of Justice (DOJ) announced it would stop relying on its longstanding guidance for enforcing this integration mandate under Title II of the Americans with Disabilities Act (ADA). Neither the underlying law nor the 1999 Supreme Court decision have been repealed. However, the DOJ, which has historically pushed states to comply, has stepped back from that role. 

As NPR reported in an August article, the shift has left many individuals and their advocates uneasy about what the future holds, though no single family’s services are expected to change overnight.

States will, however, now have more room to review their own HCBS programs, including eligibility rules, waiver programs, and provider networks, with less federal pressure. Some states may make no changes. Others may tighten eligibility or reduce service hours over time. Because the effect will vary widely by state, the most useful thing families can do right now is understand the tools available to challenge a reduction in services in case a notice arrives.

Read Every Notice Closely

Changes to Medicaid HCBS almost always begin with a written notice. Read it promptly and act on it immediately.

• Notices should state what the state is proposing to do (for example, reduce personal care hours or change a provider).

• Look for the specific rule, assessment, or budget change the agency is citing. If the reason for the change is vague, such as “budget constraints” and lacks further details, it may be worth challenging.

• Two dates usually matter: the date the change takes effect and the deadline to request an appeal. These are not always the same date and mixing them up can cost a family its right to maintain services during an appeal.

• Notices should explain how to file an appeal or ask for a fair hearing, including whether it can be done by phone, mail, fax, or online portal.

If a notice is confusing or missing any of this information, call the caseworker or agency listed and ask for clarification in writing before any deadline passes.

Know the Appeal Deadline as Well as the Earlier One Inside It

Federal Medicaid rules let states set their own appeal windows. However, a state cannot allow more than 90 days from the date a notice is mailed for a family to request a fair hearing. Many states set a shorter window, with some as brief as 30 days, so the number that matters is whatever is printed on the actual notice.

Notices often list a second, earlier deadline, sometimes called “aid paid pending,” for keeping services active while an appeal is pending. In many states, benefits only continue unchanged during an appeal if the hearing is requested before the effective date on the notice, which is sometimes as soon as 10 days after the notice was mailed. Missing this earlier deadline doesn’t always end the right to appeal; however, it can mean services are interrupted while the appeal is decided. 

When in doubt, request the hearing immediately rather than gathering every document first. You can usually add supporting paperwork after filing the request. 

An authorized representative, which can be a family member, friend, advocate, or attorney, can typically request the hearing and act on the individual’s behalf. This can be especially useful when the person receiving services has difficulty navigating paperwork or phone systems on their own.

Ask for a Written Explanation

Families are entitled to know why a service is being reduced or denied and can ask for that reason in writing. A written explanation creates a record, often reveals whether the agency followed its own procedures, and gives an appeal something concrete to respond to. It should include the following:

• The specific assessment instrument or functional score used to decide the change

• Which regulation, waiver rule, or policy is being applied

• The name and contact information of the person who made the decision

• Whether a new functional or needs assessment was conducted or whether the decision was based on existing records

Build a Paper Trail

Appeals are often won or lost on documentation, and keeping records as events happen is far easier than reconstructing them later under a deadline. Good things to keep track of include:

• Every notice, letter, and email from the Medicaid agency or managed care plan, kept in a physical or digital folder

• The date, time, and name of anyone spoken to by phone, with a short summary of what was said

• Current medical, therapy, or school records that describe the person’s needs and support the case for continued services

• Copies of the current service plan or care plan, so any proposed change can be compared against it directly

• A simple log of how a service reduction affects daily life, such as missed work, safety concerns, or health changes

Find Free or Low-Cost Help Early

Families do not have to navigate an appeal alone. Reaching out for help before a deadline, rather than after a denial, tends to produce better outcomes. Options include:

• Protection and advocacy (P&A) organizations. Every state has a federally funded P&A organization whose job is to help people with disabilities defend their legal rights, including Medicaid and HCBS issues, often at no cost.

• Legal aid societies. Local legal aid societies frequently handle Medicaid fair hearings for free, particularly for low-income households.

• Aging and Disability Resource Centers. These local offices can help explain waiver programs, connect families to case managers, and clarify how a state’s appeal process works.

• Disability-specific advocacy groups. Groups organized around a specific disability or diagnosis often track state-level policy changes closely and can flag patterns other families are experiencing.

Special needs planning attorneys experienced in Medicaid appeals can also be especially useful for complex cases involving waiver waiting lists, institutional placement threats, or complex asset or income rules.

Ask for an Assessment

A reduction in care hours or services should be based on the person’s current, documented needs, not simply on a budget target. If a state proposes a cut without a recent in-person assessment, families can request one. Documentation from doctors, therapists, teachers, or employers describing what support the person actually needs day to day can carry real weight in that assessment and in any later appeal.

Remember What Hasn’t Changed

The Olmstead decision is still binding Supreme Court precedent, and the ADA and Section 504 of the Rehabilitation Act remain in effect. A federal enforcement stance does not automatically change any individual’s Medicaid eligibility or services. Those decisions are still made case by case at the state level. 

Fair hearing rights, due process protections, and the right to appeal come from separate federal Medicaid regulations not affected by this DOJ notice. Advocacy organizations, courts, and many state governments continue to treat community integration as law, even as federal enforcement priorities shift.

Connect With Other Families

Families facing HCBS reductions in your state or county can be a source of practical, up-to-date information, such as what documentation an appeal actually needs and how long a fair hearing realistically takes. Consider joining local support groups, disability councils, and parent networks before a crisis hits.

Quick Checklist

• Immediately read every Medicaid or HCBS notice you receive

• Write down the effective date and the appeal deadline 

• Request the fair hearing right away if you may want to appeal — details can follow

• Ask, in writing, for the specific reason behind any reduction or denial

• Start a dedicated folder for every notice, call log, and supporting document

• Contact the state’s P&A organization or a legal aid office before the deadline, not after

• Request an updated needs assessment if the proposed change isn’t based on one

• Connect with other local families or advocacy groups for real-world guidance

Additional Reading

• Report: How Feds Can Improve HCBS for People With IDD

• Intellectual and Developmental Disability: What Is an IDD?