Legal Rights and Employment

Your rights are protected by law

If you have CMT, you are protected against discrimination in many parts of daily life. The Americans with Disabilities Act, along with the ADA Amendments Act of 2008, makes it unlawful to discriminate against people with disabilities in employment, in schools, in public spaces, and when using public services.

These laws require covered employers, schools, and agencies to make their spaces accessible and to provide reasonable accommodations so you can take part fully. If you believe your rights have been violated, federal agencies such as the Department of Justice, the Equal Employment Opportunity Commission, and the Department of Education handle enforcement.

You do not have to figure all of this out alone. Understanding which law applies to your situation is the first step toward asking for what you need with confidence.

Benefits when you cannot work

When CMT makes it impossible to keep working, two federal programs can help replace lost income. They work differently, so it helps to know which one fits your situation.

Social Security Disability Income (SSDI) supports people who cannot work because of a medical condition that is expected to last at least a year or to result in death. To qualify, you generally need a recent work history, having worked during the three-year period before your disability began.

Supplemental Security Income (SSI) is an income supplement for people with disabilities who have little or no income. Eligibility looks at your wages, other income, in-kind support, and certain income counted from family members. Adults may qualify when a disability prevents substantial work and is expected to last at least twelve months or result in death. Children under eighteen may qualify when they meet the income rules and have an impairment that causes marked and severe limitations lasting or expected to last at least twelve months.

Applying takes patience. Many people are denied on their first try, so careful, complete documentation of how CMT affects your daily life and your ability to work can make a real difference.

Support for children in school

If your child has CMT, several laws work together to make sure they get the education and services they need.

The Individuals with Disabilities Education Improvement Act (IDEIA) guarantees a Free Appropriate Public Education. For infants and toddlers, Part C provides an Individual Family Services Plan that can include health services, occupational therapy, physical therapy, assistive technology, and parent training. For children ages three to twenty-one, Part B provides an Individualized Education Plan (IEP) with specialized instruction, related services, extra aids, and program changes, along with strong procedural protections for your family.

Section 504 of the Rehabilitation Act prohibits disability discrimination in schools that receive federal funding. A child can receive a 504 Plan, which spells out accommodations and services such as occupational or physical therapy, even if they do not qualify for an IEP under IDEIA.

When children take standardized tests, they are entitled to the accommodations listed in their 504 Plan or IEP, such as extra time or assistive technology, so they can show what they truly know.

Health coverage and in-home care

Medicaid waivers can be a lifeline for children and adults with significant disabilities who want to receive care at home. Under a waiver, eligibility is based on the individual's own income and assets rather than the income of relatives who might otherwise be counted.

This matters for families whose household income is too high to qualify for regular Medicaid or SSI, but who still need help paying for in-home care. Each state runs its own waiver program, and the disabilities covered can vary, so it is worth checking how your state's program works.

The employment gap is real

Bureau of Labor Statistics figures put it starkly. Only 21.3% of Americans aged 16 and over with a disability were working or actively looking for work, against 67.1% of Americans without one. That gap is not about capability. It is about barriers, and most of them are removable.

Inside the CMT community the picture is more mixed than people expect. Among participants in GRIN, HNF's patient registry, 34% work full time, 3.6% work part time because of their disability, 16% are on disability, 24% are retired, 7.1% are students, and 4.6% are unemployed because of CMT.

In other words, most people with CMT are working, studying, or have already retired on their own terms. Knowing what you are entitled to ask for is a large part of staying in that group.

Your rights and accommodations at work

People with disabilities are still far less likely to be working than people without them, and the community living with CMT feels this gap firsthand. You have the right to fair treatment and to the tools you need to do your job well.

Under the ADA, employers are required to provide reasonable accommodations that let you perform your work. For CMT, that might mean adjustments that address fatigue, mobility, or hand weakness. Common examples include flexible scheduling, the ability to sit or move as needed, ergonomic or adaptive equipment, voice-to-text or other assistive technology, accessible parking, and a workspace arranged for easier movement.

An accommodation is not a special favor. It is a practical change that removes a barrier so you can keep contributing your skills.

How to ask for what you need

Requesting an accommodation can feel intimidating, but the process is more approachable when you break it into steps. Start by identifying the specific tasks that CMT makes harder, then think about the changes that would help.

Put your request in writing to your employer or human resources team, describe the barrier and the accommodation you are asking for, and be ready to talk it through together. You do not need to share your full medical history, only enough to show that the accommodation is connected to your condition.

Keep copies of your requests and any responses. Having a clear record helps you advocate for yourself and, if you ever need it, supports any next steps. Approaching the conversation with clear examples and a solution in mind helps you and your employer build a workplace that works for you.

Listen: CMT Work Accommodations

The CMT Simplified podcast turns life with CMT into practical conversations. Episode 8 covers the workplace: what reasonable accommodation actually means under the ADA, examples built around the things CMT makes hard like fatigue, mobility, and hand weakness, and a step-by-step process for making a request with confidence.