Home · Appealing a Waiver Denial
Medicaid Waiver Appeals
Your child's waiver was denied. Here is how the appeal works.
A denial, a cut in hours, or a letter ending services is a decision, not the last word. Federal law gives every Medicaid family the right to a fair hearing in front of someone who did not make the decision — and the most important parts of that right run on a clock that started the day the notice was mailed.
If services are being cut or ended, do this first
Find the date the change takes effect on your notice and request a fair hearing before that date, in writing, asking that services continue while you appeal. In most cases that keeps your child's current services in place until the hearing decision (42 CFR 431.230). Everything else on this page can happen after that request is in.
§ 01 — The federal clock
- Up to 90 days
- The longest a state may give you to request a fair hearing, counted from the date the notice was mailed. Many states allow less — your notice states yours.42 CFR 431.221(d)
- 10 days
- Minimum advance notice before the state reduces or ends services. Ask for a hearing before the effective date and services generally continue until the decision.42 CFR 431.211 · 431.230
- 90 days
- When the state must ordinarily issue a hearing decision, counted from your request. Faster, expedited hearings exist when waiting would jeopardize health.42 CFR 431.244(f) · 431.224
- 60 → 120 days
- Managed care: 60 days to appeal to the plan, then 120 days after the plan's decision to request a state fair hearing.42 CFR 438.402 · 438.408
§ 02 — What you can appeal
You have a right to a fair hearing when an application is denied or not acted on with reasonable promptness, and when services are suspended, reduced or ended (42 CFR 431.220). For an HCBS waiver, that also covers being denied the choice of home and community services instead of an institution, and being denied the services or providers you chose.
Most waiver denials turn on one finding: whether your child meets the level of care the waiver requires — for most autism and developmental disability waivers, the level provided in an intermediate care facility. That finding comes from an assessment scored by a person, often in a single visit on a good day. It is the most commonly contested part of a waiver decision, and the part families are best placed to correct, because they see the other days.
A waiting list is different. Waivers may cap enrollment, so a state can find a child eligible and still have no open slot. Ask the agency in writing whether your child was found ineligible or found eligible and waitlisted — the answer decides what a hearing can do. While you wait, check whether your state offers a Katie Beckett / TEFRA pathway, and see how your state's system compares on its state profile.
For children and young adults under 21, a waiver denial does not settle whether Medicaid pays for treatment. EPSDT requires the state to cover medically necessary services in the federal Medicaid categories — including behavioral treatment for autism — with or without a waiver slot (42 U.S.C. 1396d(r)(5)). It is a separate request with its own hearing right.
§ 03 — The appeal, step by step
Step 1
Read the notice for three things
The decision, the reason and the rule it relies on, and your deadline. Federal rules require a written notice to state all three, plus how to request a hearing and that you may bring a representative. If any is missing or vague, write that down — a defective notice is itself a hearing issue.
Step 2
Put two dates on the calendar
The last day to request a hearing, and — if services are being reduced or ended — the date the change takes effect. Requesting the hearing before that effective date is what usually keeps services in place while you appeal. Services continued this way can, in some states, be billed back if you lose, so ask about that when you file.
Step 3
Request the hearing in writing and keep proof
Use the form or address on the notice. Say plainly that you are requesting a fair hearing and, if services are being cut, that you want them continued pending the decision. Keep a copy, the date sent, and a fax confirmation, certified-mail receipt or confirmation number. If the state accepts phone requests, follow up in writing anyway.
Step 4
Ask for the case file and the assessment
You have the right to see your child's case file and every document the agency will use at the hearing. Most waiver denials rest on a level-of-care assessment, so ask for the tool that was used, the scores, and who scored it. The gap between that score sheet and your child's real day is usually the whole appeal.
Step 5
Build evidence against the stated reason
Aim every document at the reason on the notice. Letters from treating clinicians that describe functional needs in the criteria's own terms; the IEP, behavior plan and incident data from school; and a dated two-week log of supervision, prompting and physical help. Specifics beat adjectives: “needs hand-over-hand help to dress, 20 minutes each morning” beats “needs a lot of help.”
Step 6
Get help early, and bring it with you
Every state has a federally funded Protection and Advocacy organization for people with disabilities, and many legal aid offices take Medicaid hearings at no cost. You may represent your child yourself or bring a relative, friend, advocate or attorney. Call as soon as the notice arrives; the filing deadline does not wait for a callback.
Step 7
At the hearing
The hearing officer must not have been involved in the decision you are appealing. You may present witnesses, explain your evidence, and question the agency's witnesses — including the person who did the assessment. Bring copies for everyone, keep to the reason on the notice, and ask for the record to be held open if a document is still coming.
Step 8
After the decision
The written decision states its reasons and your next level of review, which in most states is a court. If you lose on the facts and your child's needs change, a new application with new evidence is often faster than a further appeal. If you win, confirm in writing when services start and who will contact you.
§ 04 — If a managed care plan made the decision
In states that deliver waiver or long-term services through a Medicaid managed care plan, the denial letter may come from the plan rather than the state. The order changes: you appeal to the plan first, within 60 days of the date on its notice. The plan must decide within 30 days, or within 72 hours if you ask for an expedited appeal because waiting could seriously harm your child's health (42 CFR 438.408).
If the plan upholds its decision, you have 120 days from that decision to request a state fair hearing. If the plan fails to send a proper notice or misses its own deadline, the plan appeal is treated as finished and you can go straight to the state hearing. Ask the plan in writing to continue services during the appeal, on the same logic as § 01.
§ 05 — Common questions
- How long do I have to appeal a Medicaid waiver denial?
- Your notice states the deadline, and it is the one that counts. Federal rules let each state choose a reasonable time of up to 90 days from the date the notice was mailed, and many states allow less. If your services are being reduced or ended rather than denied for the first time, there is a second, shorter date on the notice that matters more: request the hearing before the date the change takes effect and, in most cases, services continue until the hearing decision.
- Do I need a lawyer to request a fair hearing?
- No. You can request the hearing yourself, and you can represent your child yourself or bring a relative, friend, advocate or attorney. Free help exists: every state has a federally funded Protection and Advocacy organization for people with disabilities, and many legal aid programs handle Medicaid hearings. Contact them as soon as the notice arrives, because the filing deadline does not pause while you look for help.
- My child was put on a waiting list. Is that a denial I can appeal?
- It depends on what the agency actually decided. Waivers can cap enrollment, so a state may find a child eligible and still place them on a waiting list for an open slot. That is different from finding the child ineligible, which is the decision a fair hearing is built to review. Ask the agency in writing which one happened. You keep the right to request a hearing when an application is denied or not acted on with reasonable promptness.
- What evidence wins a waiver appeal?
- Evidence aimed at the specific reason on the notice. Most waiver denials turn on the level-of-care assessment, so request your case file, get the assessment tool and your child's scores, and answer each point where the assessment understated need. Letters from treating clinicians that describe functional needs in the terms the criteria use, school records such as the IEP and behavior data, and a dated log of the supervision and help your child needs each day are usually more persuasive than a general statement that services are needed.
- Our Medicaid is through a managed care plan. Where do we appeal?
- To the plan first. Federal rules give you 60 days from the date on the plan's notice to file an appeal with the plan, which must decide a standard appeal within 30 days or an expedited one within 72 hours. If the plan upholds its decision, you then have 120 days from the plan's decision to request a state fair hearing. If the plan misses its own deadlines, you may go straight to the state hearing.
- My child is under 21. Does a waiver denial mean Medicaid will not pay for therapy?
- Not necessarily. Children and young adults under 21 who have Medicaid are entitled to EPSDT, which requires the state to cover any medically necessary service in the federal Medicaid categories, including behavioral treatment such as ABA, whether or not a waiver slot is available. A waiver denial and an EPSDT request are separate decisions, and an EPSDT denial has its own fair hearing right.
Don't appeal with only one program in view
Families appealing one waiver often qualify for another, or for a Medicaid pathway that does not count parents' income. The Compass Quiz maps your child's situation to the waiver programs in your state in about five minutes, and the waiver grades show how your state's system compares. For free help today, see the national disability hotlines.
SpectrumPathways is not a government agency and is not affiliated with any state Medicaid program. This page provides information, not legal advice, and no attorney-client relationship is created by reading it. Federal rules cited are from 42 CFR Parts 431 and 438 as of 2026; your state sets its own deadlines and procedures within them, and the notice you received controls. For advice on your case, contact your state's Protection and Advocacy organization, a legal aid office, or an attorney licensed in your state. See our full disclaimer.
