Familial Dysautonomia Waiver in Florida: Eligibility, Services and How to Apply

The Florida Medicaid Familial Dysautonomia (FD) Waiver is a specialized Home and Community-Based Services (HCBS) waiver for people with Familial Dysautonomia who need significant medical and supportive services but want to remain living in their own home or family home.

Familial Dysautonomia is a rare genetic condition that can affect the autonomic nervous system and create complex medical and functional needs. The Florida Medicaid FD Waiver is designed to provide additional supports that can help eligible individuals remain in their communities and reduce or delay the need for hospitalization or institutional care.

Florida's FD Waiver operates under Section 1915(c) of the Social Security Act. The current waiver became effective January 1, 2025, and is approved through December 31, 2029.

What Is the Familial Dysautonomia Waiver?

The FD Waiver is different from ordinary Florida Medicaid coverage. Regular Medicaid can pay for medically necessary healthcare services covered under the Medicaid state plan. A Medicaid waiver can provide additional home and community-based services specifically designed for people who meet the waiver's requirements.

Florida's FD Waiver is intended to help eligible people with Familial Dysautonomia receive needed support while living at home or in a family setting. According to Florida AHCA, the purpose of the waiver is to promote, maintain and restore health, minimize the effects of illness and disability, and help delay or prevent hospital placement or institutionalization.

Importantly, the FD Waiver is a fee-for-service Medicaid program and is not offered through the Medicaid managed care health plans.

Who May Qualify for the Familial Dysautonomia Waiver?

Florida establishes specific eligibility requirements for the FD Waiver.

According to AHCA, an applicant generally must:

• Have a documented diagnosis of Familial Dysautonomia

• Be at least 3 years old

• Meet the required hospital level of care criteria

Florida Medicaid describes the target population as medically fragile individuals ages 3 through 64 who meet a hospital level of care.

Meeting the diagnosis and age requirements does not automatically guarantee enrollment.

The applicant must also go through the state's assessment process to determine whether the individual's medical and functional needs meet the required level of care. The waiver documentation indicates that the Bureau of CARES reviews medical information and conducts a comprehensive needs assessment when determining level-of-care eligibility.

Families should therefore avoid assuming that a diagnosis by itself guarantees waiver services.

What Does the Florida Familial Dysautonomia Waiver Cover?

The FD Waiver provides several types of services intended to support eligible individuals in their homes and communities.

1. Behavioral Services

Behavioral services may be available when behavioral support is identified as necessary under the individual's approved service plan.

2. Consumable Medical Supplies

The waiver can provide certain consumable medical supplies when they are authorized and meet program requirements.

3. Durable Medical Equipment

Eligible individuals may receive certain durable medical equipment needed because of their medical condition and functional needs.

4. Non-Residential Support Services

Non-Residential Support Services can provide assistance intended to help an eligible person remain safely in the community.

Florida's current waiver information also identifies transportation as part of the scope of Non-Residential Support Services, subject to the applicable program requirements.

AHCA announced in September 2026 that it is proposing clarification of transportation within this service.

5. Respite Services

Respite services can provide temporary relief and support for caregivers of eligible waiver participants. This can be particularly important for families caring for someone with substantial medical or functional needs.

6. Support Coordination

Support coordination helps participants navigate their approved waiver services and develop and monitor an individualized service plan.

7. Adult Dental Services

The FD Waiver includes dental services for eligible adult participants. Florida AHCA specifically identifies adult dental services for recipients age 21 and older.

The exact services an individual receives are not automatically guaranteed simply because they are listed under the waiver. Services must be appropriate, authorized and included within the individual's approved plan and applicable Medicaid rules.

How Do You Apply for the Familial Dysautonomia Waiver?

Families interested in the FD Waiver should start by contacting the Florida Agency for Health Care Administration (AHCA).

Florida AHCA currently lists the following contact information for FD Waiver inquiries:

Telephone: 1-888-419-3456

Mail: Agency for Health Care Administration2727 Mahan Drive Mail Stop 20 Tallahassee, FL 32308

The application and eligibility process involves more than simply providing proof of a diagnosis.

Step 1: Establish the Diagnosis

The applicant must have documentation showing a diagnosis of Familial Dysautonomia.

Step 2: Submit the Required Information

Medical information and other documentation may be required so the state can evaluate the individual's needs.

Step 3: Complete the Level-of-Care Assessment

The state evaluates whether the applicant meets the required inpatient hospital level of care.

The FD Waiver documentation describes a process in which medical information from the physician is reviewed and a face-to-face comprehensive needs assessment is conducted.

Step 4: Determine Waiver Eligibility

If the applicant meets the applicable requirements, the state can proceed with the waiver enrollment process and development of an individualized service plan.

Step 5: Develop the Individualized Plan

Once eligible, services are based on the participant's specific needs rather than simply providing every service listed in the waiver.

Families should carefully review the approved service plan to understand which services have actually been authorized.

Is the Familial Dysautonomia Waiver Part of SMMC?

One important distinction is that the FD Waiver is not simply another benefit offered through a Florida Medicaid managed care plan.

Florida AHCA states that the Familial Dysautonomia Waiver is a fee-for-service program and is not offered by health plans serving Medicaid enrollees.

That distinction can be confusing for Medicaid recipients because many Florida Medicaid healthcare services are delivered through the Statewide Medicaid Managed Care program.

If you are enrolled in a Medicaid managed care plan, do not assume that your health plan is responsible for administering the FD Waiver.

Why Is the FD Waiver Important?

For a person with Familial Dysautonomia and significant medical needs, maintaining the ability to live at home can be extremely important.

The waiver is structured around a community-based approach. Instead of relying exclusively on institutional care, the program provides specific supports that can help an eligible participant remain at home.

This can benefit both the participant and family caregivers. The program's stated goal is not merely to provide additional benefits. It is designed to help maintain health, address disability-related needs and delay or prevent institutionalization.

What If an Application Is Denied?

A denial does not necessarily mean the process is over. The FD Waiver documentation provides for appeal and fair-hearing rights when applicants or participants receive certain adverse decisions.

For example, if the applicant does not meet the required level of care, the applicant receives a notice explaining the determination and the right to request a fair hearing.

Anyone receiving a denial or reduction notice should carefully read the notice because it should explain the reason for the decision and the applicable appeal rights and deadlines.

Frequently Asked Questions

What is the Florida Familial Dysautonomia Waiver?

It is a Florida Medicaid Home and Community-Based Services waiver that provides specialized supports to eligible individuals with Familial Dysautonomia so they can remain in their homes or family homes and potentially avoid or delay institutional care.

What age do you have to be?

Florida's FD Waiver eligibility criteria require the applicant to be at least 3 years old. Florida Medicaid describes the waiver population as ages 3 through 64.

Do you have to have Familial Dysautonomia?

Yes. A documented diagnosis of Familial Dysautonomia is one of the program's eligibility requirements.

Does having Familial Dysautonomia automatically qualify someone?

No. The individual must satisfy all applicable requirements, including the required level-of-care criteria.

Does the waiver provide medical equipment?

Yes. Durable Medical Equipment is one of the services included under the FD Waiver, subject to program requirements and authorization.

Does the waiver provide respite care?

Yes. Respite Services are included among the covered FD Waiver services.

Does the waiver cover dental care?

Adult dental services are included for eligible adults, with applicable Medicaid requirements.

Is the FD Waiver available through my Medicaid managed care plan?

No. Florida AHCA states that the FD Waiver is a fee-for-service program and is not offered through Medicaid health plans.

How do I get more information?

For information about applying for the FD Waiver, contact Florida AHCA at 1-888-419-3456.

A Resource for Florida Medicaid Recipients

Understanding Florida Medicaid waivers can be difficult because eligibility, medical assessments, level-of-care requirements, service authorizations and Medicaid enrollment rules can all affect whether an individual receives services.

For additional Florida Medicaid information, including eligibility, applications, waivers, benefits, renewals and appeals, Ask Medicaid Florida is an additional consumer resource for Florida Medicaid recipients and families.

Related Florida Medicaid Articles

1. Florida Medicaid Waiver Program: Eligibility & How to Apply

2. Florida Medicaid Help Center: Eligibility, Benefits & Appeals

3. Florida Medicaid Eligibility and Enrollment

Important Note

Medicaid waiver rules can change. The information in this article reflects the Florida FD Waiver information available from AHCA and CMS as of September 2026. Individuals should confirm current eligibility, services and application requirements directly with Florida AHCA before making healthcare or financial decisions.

Disclaimer

This article is for educational purposes and is not legal, financial or Medicaid-eligibility advice. Medicaid rules and dollar amounts can change, so readers should verify current requirements before making financial decisions. Read full disclaimer.