Medicaid Work Requirements

The One Big Beautiful Bill Act of 2025 (OBBBA) requires most states to implement Medicaid work requirements for certain adults starting January 1, 2027. However, the law specifically provides exemptions for people who are considered medically frail or have certain disabilities and serious medical conditions. 

The work requirements include protections for people with disabilities and serious medical conditions. Individuals with Barth syndrome may qualify for a medical frailty exemption when symptoms such as cardiomyopathy, muscle weakness, fatigue, exercise intolerance, or other complications limit their ability to work or participate in community engagement activities. Families should keep medical records current and work with their healthcare providers to ensure appropriate documentation is available if an exemption is needed. 

This is general information and implementation details may vary by state.

Who is exempt?

Under the law, states must exempt individuals who are medically frail, including people who:

• Are blind or disabled.
• Have a physical, intellectual, or developmental disability that limits their ability to perform activities of daily living.
• Have a serious or complex medical condition.
• Have a disabling mental disorder.
• Have a substance use disorder. 

What does "medically frail" mean?

Recent CMS guidance indicates that having a diagnosis alone may not be enough. States are directed to consider whether the condition actually limits the individual's ability to meet work or community engagement requirements. In other words, the medical condition must impair the person's capacity to work, volunteer, or participate in required activities. 

How does this apply to Barth syndrome?

Many individuals with Barth syndrome would likely qualify for a medical frailty exemption because the condition can involve:

• Cardiomyopathy and heart failure risk.
• Severe fatigue and exercise intolerance.
• Skeletal muscle weakness.
• Developmental challenges.
• Recurrent infections due to neutropenia.
• Functional limitations that affect the ability to maintain consistent employment. 

The key issue is not simply the diagnosis of Barth syndrome, but whether the individual's symptoms and functional limitations make it difficult or impossible to satisfy work requirements. Documentation from treating physicians is likely to be important. 

What documentation may be required?

Depending on the state, Medicaid agencies may require:

• A physician certification or medical exemption form. 
• Medical records documenting the condition.
• Evidence of functional limitations.
• Periodic recertification of the exemption. Some states have adopted stricter verification requirements than the federal minimum. 

What information should my provider include in their documentation?

You can provide them with this template. View in Microsoft Word. View as a PDF. 

Appealing a Denial

If your Medicaid work-requirement exemption is denied, do not assume the decision is final. 

You have the right to appeal and submit additional medical evidence. Because Barth syndrome can cause cardiomyopathy, muscle weakness, severe fatigue, exercise intolerance, and other serious health complications, many individuals may qualify for a medical frailty exemption when these symptoms limit their ability to work or participate in required activities. Work closely with your healthcare providers to ensure that medical documentation clearly explains how Barth syndrome affects functional capacity and daily living. The exact process varies by state, but these steps are commonly recommended.

For a Barth syndrome-specific appeal, a cardiologist or metabolic/genetics specialist letter is often particularly helpful because it can document the condition's long-term impact on stamina, physical function, and work capacity.

1. Read the Denial Notice Carefully

The notice should explain:

• Why the exemption was denied.
• The deadline to appeal.
• How to request a fair hearing.
• Whether benefits can continue during the appeal process. 

2. File the Appeal Immediately

Do not wait to gather all documentation before filing. Submit the appeal within the deadline stated in the notice and indicate that additional medical evidence will follow.

Example:

"I am appealing the denial of my Medicaid medical frailty/work requirement exemption. I/my child has Barth syndrome, a serious genetic disorder that significantly limits their ability to participate in work and community engagement activities."

3. Obtain Strong Medical Documentation

Ask treating providers to document:

• Barth syndrome diagnosis.
• Cardiomyopathy or heart-related complications.
• Fatigue and exercise intolerance.
• Muscle weakness.
• Neutropenia or recurrent infections.
• Impact on daily functioning and ability to work.
• Position letter from BSF

The most persuasive letters focus on functional limitations, not just the diagnosis. CMS guidance emphasizes whether the condition impairs the person's ability to meet work requirements. 

Sample language for the treating physician:

"Due to Barth syndrome, this patient experiences severe fatigue, exercise intolerance, and muscle weakness. These impairments substantially limit the patient's ability to perform and sustain employment or other community engagement activities. In my medical opinion, the patient meets criteria for a medical frailty exemption."

4. Gather Supporting Evidence

Include:

• Cardiology reports.
• Echocardiogram results.
• Genetic testing reports.
• Hospital discharge summaries.
• Physical therapy evaluations.
• Disability determinations (if applicable).
• School IEPs or vocational assessments showing functional limitations.

5. Request a Fair Hearing

At the hearing:

• Explain how Barth syndrome affects daily life.
• Describe symptoms that interfere with consistent work participation.
• Submit physician statements and medical records.
• Have a caregiver, family member, or clinician provide testimony if permitted.

6. Seek Advocacy Assistance

Free help may be available through:

• Legal Aid organizations.
• Protection and Advocacy agencies for people with disabilities.
• State Medicaid ombudsman programs.
• Barth Syndrome Foundation.

Length of an Appeal

The length of a Medicaid appeal varies by state, but generally:

• Filing the appeal: Usually must be done within 30 to 90 days of the denial notice, depending on state rules.
• Scheduling a fair hearing: Often occurs within 30 to 90 days after the appeal is filed.
• Receiving a decision: Many states issue a written decision within 30 to 90 days after the hearing, although some cases are resolved more quickly. 

In practice, a complete appeal may take anywhere from 1 to 6 months, depending on:

• State Medicaid agency workload.
• Whether additional medical records are requested.
• Complexity of the individual's medical condition.
• Availability of hearing dates. 

Important for Barth Syndrome Families

If the exemption denial could result in loss of Medicaid coverage, check the denial notice immediately to see whether you can request:

• Continuation of benefits pending appeal ("aid continuing"), if the appeal is filed within a specified timeframe.
• An expedited appeal if loss of coverage could seriously affect health or access to medically necessary care.

For someone with Barth syndrome, delays in access to cardiology care, medications, specialist visits, or laboratory monitoring can have significant consequences. 

Documentation from treating physicians describing these risks may support requests for expedited review. 

Recommendation

File the appeal as soon as possible, then gather supporting documentation afterward. Many successful appeals include:

1. A detailed physician letter.
2. Cardiology records.
3. Genetic confirmation of Barth syndrome.
4. Evidence of fatigue, muscle weakness, exercise intolerance, or other functional limitations.
5. Statements from caregivers describing daily limitations.

Early filing preserves appeal rights and may help protect coverage while the case is being reviewed.