Getting Disability for Turner Syndrome and Related Problems

Turner syndrome (TS) is a genetic condition resulting in a missing or incomplete X chromosome. TS only affects girls and women. Turner syndrome can be diagnosed before birth through ultrasound or amniocentesis, but it's diagnosed in adults through blood testing. Turner syndrome is sometimes alternatively known as Ullrich-Turner syndrome, gonadal dysgenesis, or 45,X.

Is Turner Syndrome a Disability?

Turner syndrome itself isn't considered a disability. Many people diagnosed with TS can lead healthy, productive lives with proper medical treatment.

But girls and women with Turner syndrome can sometimes experience symptoms or complications that substantially interfere with their daily lives. In these cases, a disorder related to Turner syndrome can cause limitations severe enough to win a disability claim with the Social Security Administration (SSA).

If your symptoms or complications from Turner syndrome prevent you from working, your condition might satisfy Social Security's definition of "disabled."

Symptoms of Turner Syndrome

Turner syndrome is a genetic condition, but it's usually not inherited. Women born with TS are rarely able to get pregnant due to underdeveloped ovaries, although some affected women can bear children with donated eggs.

Girls with Turner syndrome often display distinct facial features, which can be noticeable from birth. In addition, girls and women with TS are generally shorter than average females and can have smaller fingers and toes.

While most girls hit a growth spurt during puberty, those with Turner syndrome can find their growth delayed or reduced. Women with TS are, on average, about eight inches shorter than non-affected women.

In addition to differences in physical characteristics, Turner syndrome can affect a wide variety of the body's systems, from hearing problems to heart defects to thyroid issues. Cognitive and social abilities can also be impaired, causing certain learning difficulties, with mathematics and spatial reasoning often proving especially challenging.

Turner syndrome is also associated with an increased risk of attention deficit hyperactivity disorder (ADHD). And girls with Turner's and ADHD can be less responsive to treatment than other children.

Social Security's Blue Book Listings and Turner Syndrome

Children and adults with Turner syndrome can qualify for disability benefits by meeting the requirements of a listing in Social Security's blue book.

How Children With Turner Syndrome Can Qualify

To qualify for disability benefits, children with Turner syndrome must meet the requirements of a listing or display "marked and severe" functional limitations. While there's no specific listing for Turner syndrome in the Blue Book, the condition might be evaluated—depending on the child's symptoms—under several listings, including:

• low birth weight or failure to thrive (listing 100.00)
• intellectual disability (listing 112.05)
• learning disabilities and ADHD (listing 112.11), or
• hearing loss (listings 102.10 or 102.11).

A child who meets the criteria in these listings or displays limitations that are just as severe as these listings can meet the medical requirements for Supplemental Security Income (SSI) disability benefits. (Learn more about the Social Security benefits available for children.)

How Adults With TS Can Meet a Listing

There's also no adult listing for Turner syndrome. Instead, adults with TS are evaluated based on the Blue Book listings most relevant to their symptoms.

For example, if you have TS with heart problems, you'd be evaluated under the cardiovascular listings. If you have TS and osteoporosis, you could be evaluated under listing 1.19 for pathologic fractures (broken bones caused by disorders that weaken the bones). Someone with TS and an intellectual disability might meet the requirements of listing 12.05 for intellectual disorder.

If you can't meet a listing, you can still qualify for benefits if your condition prevents you from working full-time (called doing "substantial gainful activity," or SGA).

Getting Disability Benefits Without Meeting a Listing

Social Security uses different criteria for children and adults who don't meet a listing.

Social Security Looks at Children's Limitations

Children with Turner syndrome who don't meet a listing (say they have hearing loss, although not as extreme as the listing requires) need to prove that they suffer from functional limitations that are equivalent in severity to the listings.

Social Security determines the severity of a child's limitations by looking at report cards, teacher's notes, and standardized test results (along with medical records). To get SSI, your child must have serious limitations in two, or an extreme limitation in one, of the following functional areas ("domains"):

• acquiring and using information
• attending and completing tasks
• interacting and relating to others
• moving about and manipulating objects
• caring for self, and
• health and physical well-being.

If your child needs a lot of help in more than area, they likely have serious limitations that could "functionally equal" the listings.

Social Security Looks at Adults' Capacity for Work

Adults lacking the residual functional capacity (RFC) to perform full-time work can receive disability benefits through a "medical-vocational allowance." Your RFC is an assessment of your work-related abilities, despite your impairments. Your RFC represents the most you can do on a regular and sustained basis, classified as one of the following:

• heavy work
• medium work
• light work
• sedentary work, or
• less than sedentary work.

For example, if you have TS and scoliosis that causes your legs to go numb, you might be unable to stand for more than a couple of hours a day. In this case, your RFC would likely be for sedentary work—unless the pressure on your spine also makes your hands and fingers numb. In that case, your RFC might be for less than sedentary work.

In determining whether you qualify for a medical-vocational allowance, Social Security will compare your RFC to your past jobs. If you can't perform your past work because of limitations in your RFC, Social Security will look to see if there's other work in the national economy that you could do full-time. To make this determination, Social Security will consider your:

• age
• education
• past work experience, and
• work-related limitations in your RFC.

If there's no type of work you can still do, Social Security will find you disabled.

Proving Your Disability Case Based on Turner Syndrome

A diagnosis of Turner syndrome by itself isn't enough to qualify you (or your child) for disability benefits. Both children and adults must provide medical evidence documenting the nature and severity of their impairments.

How Children With TS Can Prove Disability

For children, birth records and other medical evidence indicating the diagnosis and extent of their symptoms will be helpful. Clinical notes and diagnostic testing of speech therapists, audiologists, behavioral therapists, and others can also be persuasive. Non-medical evidence can also prove beneficial, including:

• school records
• IEPs, and
• letters from teachers and parents.

Children should also have medical opinions from their treating physicians. It's helpful if your child's medical providers can address whether your child functionally equals the disability listings (by discussing the severity of their limitations). A disability attorney can help you correspond with your child's doctors to ensure the right questions are asked.

Proving an Adult with Turner Syndrome is Disabled

Adults must ensure that Social Security has all of the relevant medical records documenting their impairments. A medical source statement from your doctor can help show Social Security what your limitations are. Ask your doctor to complete an RFC form to address any physical and mental symptoms that could impact your work performance.

In addition, letters from former bosses and coworkers can help demonstrate the extent of your past problems on the job. Because other people with Turner syndrome are able to work, you might want to hire a disability attorney to help persuade Social Security of the seriousness of your impairments.

Learn more about how a disability lawyer can help build your case.

How to Apply for Disability Benefits for Turner Syndrome

The disability application process differs somewhat depending on whether you're applying for Social Security disability insurance (SSDI) or SSI benefits for yourself or a child.

You can only get SSDI benefits if you're an adult and you meet Social Security's work requirements. You can apply for SSDI in any of the following ways:

• file an online application
• call the national office at 800-772-1213 and make an appointment to apply by phone, or
• contact your local Social Security office to make an appointment to apply in person or by phone.

If you aren't eligible for SSDI benefits, you might still qualify for disability through SSI, which has no work requirement. You can start an SSI application online for yourself (or your child). Once you do, Social Security will contact you to schedule an interview to complete the application. You can also start an SSI application for yourself or a child by calling the number above or contacting your local SSA office.

Learn more about the SSDI and SSI application processes, including the kind of information you'll need to file a claim.

_{Updated February 12, 2024}