Social Security Disability Based on Spina Bifida

According to the Centers for Disease Control (CDC), about 1,400 children are born with spina bifida in the U.S. each year. If you or your child have been diagnosed with spina bifida, you may have questions about how the condition can affect the ability to work or succeed in school.

What Is Spina Bifida?

Spina bifida (SPY-nuh BIFF-uh-duh) is a birth defect where the neural tube, which forms during fetal spine and brain development, doesn't close properly. Symptoms can range from mild to severe depending on how large the spinal opening is and whether the spinal cord is affected.

Most types of spina bifida fall into one of three categories: spina bifida occulta, meningocele, and myelomeningocele.

Spina Bifida Occulta

Spina bifida occulta (oh-CULT-ah) is the most common and mildest type of spina bifida. Occulta is Latin for "hidden," and often people with spina bifida occulta don't know they have the defect until it's discovered on an X-ray or MRI for an unrelated disorder. Spina bifida occulta usually doesn't cause any symptoms.

Meningocele

Meningocele (mah-NIN-guh-seal) is a rare form of spina bifida that happens when a fluid-filled membrane protrudes through the opening of the spine. Because meningocele doesn't affect the spinal cord or surrounding nerves, any symptoms are usually minor and typically fixed with surgery.

Myelomeningocele

Myelomeningocele (my-ell-oh-mah-NIN-guh-seal) is the most serious kind of spina bifida. Like meningocele, the condition results from a sac of fluid coming through the spine, but because it involves damage to nerves and the spinal, symptoms are more severe.

What Causes Spina Bifida?

Doctors aren't yet sure what causes spina bifida, but they think some combination of genetics and environment plays a role. People with a family history of spina bifida might be at an increased risk of inheriting the condition. Not getting enough folic acid (also known as vitamin B-9) during early pregnancy may also increase the chances of developing spina bifida.

Is Spina Bifida a Disability?

The Social Security Administration (SSA) awards disability benefits to people who have a severe impairment that keeps them from working full-time for at least one year. (Children must show marked and severe functional limitations that last for at least one year.)

Not everybody with spina bifida will meet this definition of disability—people with spina bifida occulta who don't have any symptoms probably won't qualify—so whether you can receive benefits depends on how limiting your symptoms are. Because myelomeningocele produces the most severe symptoms of the three spina bifida types, people with the condition are more likely to get benefits.

Getting Disability for Spina Bifida by Meeting a Listed Impairment

Very severe symptoms caused by spina bifida may be sufficient for the SSA to award you benefits under the listing of impairments. Listed impairments are conditions that Social Security considers automatically disabling, provided that you have the medical evidence required by the listing.

Spina bifida isn't a listed impairment, but the SSA can evaluate your symptoms under related listings for affected body systems, such as musculoskeletal or neurological disorders. Some examples include:

• listing 1.15 for nerve root compression due to a spinal disorder
• listing 1.16 for spinal canal narrowing that pressures nerves in your lower back,
• listing 11.08 for spinal cord disorders that restrict use of your extremities or inhibit mental functioning
• listing 12.05 for intellectual disorder with significant deficits in functioning, and
• listing 12.11 for neurodevelopmental disorders with serious mental limitations.

Each of these listings requires you to have medical documentation—such as X-rays, MRIs, or cognitive testing—that supports the kinds of functional limitations described in the listings. For example, if you have an MRI showing that a fluid sac is pushing on a nerve causing so much weakness in your legs that you need crutches to walk, you may meet the listing 1.15 criteria for disability. Or if you have an IQ score of 70 and demonstrate an extreme inability to understand instructions, you may meet listing 12.05.

If you think you might meet one of the above listings, it's a good idea to go over the listing requirements with your regular doctor. Your doctor might agree to write a letter to Social Security discussing how you meet the criteria of a specific listing. The SSA values the opinions of treating medical providers who can shed light on the limitations you have from spina bifida.

Getting Disability for Spina Bifida With a Reduced Functional Capacity

You can still qualify for disability even if you don't meet a listing if your spina bifida symptoms keep you from doing any full-time jobs. Social Security will review your medical records, doctors' opinions, and self-reported daily activities to determine your residual functional capacity (RFC). Your RFC is an assessment of what you can and can't do in a work environment.

A typical RFC for somebody with spina bifida will include exertional (strength-related) restrictions on walking, standing, lifting, and carrying. Nerve damage can cause urinary and bowel incontinence, requiring swift access to a nearby bathroom or extra breaks during the workday. Scoliosis caused by spina bifida can limit the amount of postural activities you can perform, such as bending, crouching, or kneeling. And pain from clubfoot that can only be relieved by elevating the legs can rule out even sit-down jobs.

Restrictions to semi-skilled or unskilled work are also common in RFCs where mental symptoms are present in the medical record. Social Security compares your current RFC with the physical and mental demands of your past work to see if you could do those jobs today. If you can't, the agency will need to determine whether any other jobs exist that you could do within your RFC.

For example, some people with mild spina bifida are vulnerable to bone fractures from mild injuries. They'd be unable to safely perform any jobs that pose a fall risk or require heavy lifting. These restrictions in an RFC would eliminate most warehouse jobs and janitorial positions. Social Security might conclude that they can do less dangerous work, such as cashier or file clerk, but if they have additional restrictions, the agency might not be able to find other jobs they can do (and award them benefits).

What Evidence Do You Need to Get Disability for Spina Bifida?

The SSA requires a lot of documentation of your symptoms and conditions in order to get disability benefits. Your medical records are the foundation of your disability claim, so make sure to let the agency know the names, dates, and contact information of all your medical providers.

Medical Records

Social Security will want to see your complete medical history going back to when you first think you became disabled. Many disability applications are denied at first simply because not enough medical records were provided. Be sure to supply Social Security with the following records with your initial application:

• clinical notes from all the doctors who've treated you for symptoms related to spina bifida
• hospital admission and discharge notes
• copies of lab reports, MRIs, CT scans, EEGs, X-rays, or any other diagnostic exams
• names of medications including dosages, side effects, and the date prescribed, and
• prescriptions for assistive devices such as walkers or crutches.

The SSA will try to get your medical records based on the information you've provided, but you can help move the process along quicker if you're able to get and submit the records yourself.

Activities of Daily Living Questionnaire

You should submit a completed activities of daily living (ADL) questionnaire with your application. The ADL questionnaire should contain a detailed description of how your spina bifida impacts your day-to-day routine, including what kind of help you get from other people, how your social life is affected, what chores you can and can't do, how you handle pain, and any other activities that are limited by your medical condition.

If you require assistance with your ADLs, such as a live-in caregiver, provide the name of your caregiver and discuss the types of activities they help you with. If you live in a group home or nursing facility, your medical records from that establishment will be enough.

IQ Tests and School Records

If part of your disability application is based on an intellectual disorder, you should submit the results of any IQ tests you've had. The most common IQ tests are the Wechsler Adult Intelligence Scale, Fourth Edition (WAIS-IV), the Wechsler Intelligence Scale for Children, Fifth Edition (WISC-V) and the Stanford-Binet.

Applicants who apply due to low IQ should also provide school records to show that the intellectual disability began before the age of 22, including report cards, diagnostic exams, enrollment in special education classes, or an individualized education program (IEP). This information can generally be requested from the school district.

Non-Medical Disability Requirements

Before Social Security can decide that you're disabled, the agency needs to see that you're legally eligible to receive Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), or both. SSDI eligibility is determined by your work credits, while SSI is needs-based, with income and asset limits. You also need to show that you haven't been (or won't be) earning more than the substantial gainful activity amount for at least 12 months.

If you're not sure whether you're eligible for disability benefits, consider speaking with an experienced disability lawyer. An attorney can explain why you do (or don't) qualify for SSDI or SSI and give you a general idea of how strong your case is. Disability lawyers work on contingency—meaning they don't get paid unless you win—so hiring an attorney has many advantages with few drawbacks.