Applying for Social Security Disability
When CMT makes it impossible to keep working, Social Security disability benefits can replace part of your income. Most CMT claims are denied the first time, and the difference between a denial and an approval is usually the evidence, not the diagnosis. Here is how the process works and how to prepare.
At a glance
- There are two programs: SSDI, earned through the Social Security taxes you paid while working, and SSI, for people with little income and few assets.
- You must show you cannot do substantial work because of a medical condition expected to last at least 12 months. Being unable to find a job is not enough on its own.
- Most initial CMT claims are denied. A denial is a step in the process, not the end of it. Appeal within 60 days every time.
- The strongest evidence is a residual functional capacity form completed by your own doctor, describing exactly what you can and cannot do.
- Tell your doctor the whole story at every visit, in specifics: how far you can walk, how long you can stand, what your hands can no longer do.
- Confirm your doctor will support the claim before you stop working and apply.
- Representatives are paid only from back benefits, at a rate and cap set by Social Security, so there is no fee if you do not win.
Two programs, one application
Social Security Disability Insurance (SSDI) is for people who paid Social Security taxes through their work. Depending on your age, you generally need to have worked about five of the last ten years. The monthly amount depends on your earnings record, and benefits can be paid back to the sixth month of disability or up to 12 months before you applied, whichever is later.
Supplemental Security Income (SSI) is for people who are not insured through work and have limited income and resources. In 2026 the federal payment is up to $994 a month for an individual and $1,491 for a couple, and your countable assets must stay under $2,000 for an individual or $3,000 for a couple. Your home and one car do not count. SSI approval comes with Medicaid right away.
With SSDI, Medicare starts later: there is a five-month waiting period before benefits begin, then 24 months of benefits before Medicare eligibility, so about 29 months from the date Social Security says your disability began.
What you have to prove
Social Security's definition is strict. You must be unable to engage in any substantial gainful activity because of a medically determinable physical or mental impairment that has lasted, or is expected to last, at least 12 months. In 2026, earning more than $1,690 a month is generally treated as substantial work and disqualifies a claim.
The agency decides every claim with the same five questions. Are you working? Is your CMT severe? Does it meet one of Social Security's listed impairments? Can you still do the easiest job you held in the last 15 years? And if not, can you do any other work that exists in the economy? Most CMT cases are decided on that last question.
Charcot-Marie-Tooth has its own entry in Social Security's listing of impairments, section 11.14 for peripheral neuropathy. Meeting it means automatic approval, but you have to meet every element: loss of motor function in two limbs that makes it extremely hard to stand up from a seat, keep your balance while standing or walking, or use your arms, plus a marked limitation in thinking, interacting, keeping pace, or managing yourself. Many people with CMT do not meet the listing. That does not mean you lose. It means the case turns on your functional capacity instead.
The evidence that wins CMT claims
If Social Security's own reviewing doctor is the only medical opinion in your file, the file will usually say you can do light work. The counterweight is a residual functional capacity (RFC) form completed by your treating doctor. It records, in Social Security's own categories, how long you can sit, stand, and walk, how much you can lift, whether you can grasp, handle, and finger objects, what postures you cannot hold, and what environments you must avoid. A second, mental RFC form matters if fatigue or pain affects concentration.
The form only works if your medical records back it up. Give your doctor a complete history at every visit: the symptoms, how they limit you at work and at home, and what has changed. Vague notes like "doing well" or "no new complaints" are used against claims. Specific notes about falls, dropped objects, hand weakness, and how far you can walk support them.
Age matters more than people expect. Social Security's rules make approval easier at 50 and older, and easier again after 60, because the agency assumes less ability to adjust to new work. Under 50, you generally have to show you cannot even do sedentary work, which the agency defines as lifting 10 pounds, sitting about six hours, and standing or walking about two hours in a workday.
Denied? Keep going
A first denial is normal. Common reasons are missing medical records, no supporting statement from a doctor, and a work history that was not described accurately. You have 60 days to file a request for reconsideration, and missing that deadline means starting over. Use the request to add anything new: tests, a new specialist, a change in function.
If reconsideration is denied too, request a hearing before an administrative law judge. The judge is not bound by the earlier decisions and looks at the whole record fresh. This is the stage where most CMT claims are won, and also where a vocational expert will be asked whether someone with your limitations could do any job, which is why the RFC evidence matters so much.
Timelines vary by location, and a hearing can be a year or more after the initial application. Plan for that, keep every appointment, and keep your records current while you wait.
Before you apply
Talk to your doctor first. Ask directly whether they believe you cannot work and whether they will complete an RFC form. If the answer is no, the claim is not ready, and some claims become winnable only as CMT progresses.
Decide whether you want help. A representative can gather records, get the RFC forms completed, and prepare you for the hearing. Fees come only out of past-due benefits, at a percentage and dollar cap that Social Security sets, so there is no charge if the claim does not succeed.
This page explains the process in general terms and is not legal advice. For your own situation, talk to a disability attorney or a representative accredited by Social Security.
Frequently asked questions
What is the difference between SSDI and SSI?
SSDI is earned through the Social Security taxes you paid while working and pays an amount based on your earnings record. SSI is for people without that work history who have limited income and assets, and it comes with Medicaid immediately.
Can I work at all while I apply?
A little. In 2026, earning more than $1,690 a month is treated as substantial work and will disqualify the claim. Below that, your earnings are still looked at closely, so talk to a representative before taking any work.
Does a CMT diagnosis qualify me automatically?
No. CMT falls under Social Security listing 11.14, but you must meet every element of the listing. Most people with CMT are approved instead by showing, through records and an RFC form, that they cannot do any job on a sustained basis.
My first claim was denied. Is it worth appealing?
Yes. Most CMT claims are denied at first, and the hearing stage, in front of a judge who looks at the record fresh, is where many are won. Appeal within 60 days of each denial.
When does Medicare start with SSDI?
After a five-month waiting period and then 24 months of SSDI benefits, so roughly 29 months from the date Social Security finds your disability began. SSI brings Medicaid right away.
What does a representative cost?
Nothing up front. If you win, the fee comes out of your past-due benefits at a percentage and maximum that Social Security sets, and nothing if you lose.
Start with your subtype
The most useful first step in living well with CMT is confirming your subtype. From there, the right care and research opportunities fall into place.