Social Security Disability Based on Spina Bifida

Spina bifida (SB) is a congenital (present at birth) neural tube defect, a disorder that can involve the spinal cord, the brain, or the coverings that protect them. There are three types of SB: occulta (least serious), meningocele (of medium severity), and myelomeningocele (most serious). People with occulta SB or meningocele SB may not even be aware that they have the condition until later in life.

Spina bifida occurs when a fetus's spine does not close during the first few months of pregnancy. Some infants with SB are born with open lesions on their lower back that can be later closed by surgery. Even when these lesions are repaired, however, children can suffer permanent paralysis or nerve damage in their lower limbs.

In addition to difficulty with walking and limb movement, many people with SB (but not all) have learning disabilities or sensory deficits, and many (but not all) experience urinary and bowel incontinency due to nerve damage.

There is no cure for SB, and the prognosis depends on the type of SB the individual is born with.

Can I Get Disability for Spina Bifida or Myelomeningocele?

Whether you qualify for disability benefits based on your SB depends on the severity of your symptoms. Spina bifida in itself is not a condition that automatically qualifies for disability; instead, Social Security will evaluate your ability/disability based on the particular symptoms you have.

First, Social Security will determine whether your symptoms match the requirements of one of the conditions that qualify for automatic approval (in what's called a "medical listing"). Because SB involves the spinal cord, sufferers frequently experience extensive musculoskeletal symptoms, such as problems walking, that may qualify them under Social Security's musculoskeletal listings. Others may have difficulty with sensation in the legs or bowel or urinary incontinence due to neurological abnormalities and could qualify under the neurological listings. For those whose cognitive ability is severely impaired because of SB, it may also be possible to qualify under Social Security's intellectual disorder listing or the neurodevelopmental listing for less severe intellectual deficits.

Musculoskeletal Impairments Caused by Spina Bifida

The most obvious complications of spina bifida are its impairments based on spinal abnormalities. Social Security will automatically approve your claim for disability based on your SB if your spine is compromised and you experience one of the following listed conditions:

• nerve root compression, which often causes pain, muscle fatigue or weakness, and loss of feeling or reflexes. (For details on the listing requirements, see our article on nerve root compromise.)
• lumbar (lower back) spinal stenosis resulting in compromise of the cauda equina, a bundle of nerve roots that descends from the end of the spinal cord. This compression of the cauda equina often causes neurogenic claudication, or pain and weakness in the buttocks, thighs, and calves. (For details on the listing requirements, see our article on spinal stenosis.)

Neurological Impairments Caused by Spina Bifida

You can also get approved for disability benefits based on neurological symptoms of your SB under the spinal cord disorders listing.

One way is to prove that you experience severe and ongoing problems with the physical functioning of at least two of your extremities (your arms or legs). Your problems must cause you extreme difficulty in one of the following areas:

• the ability to balance while standing or walking
• to stand up from a seated position, or
• to use the arms and/or hands.

Another way (for adults only) is to prove that, along with a limitation in physical functioning that isn't severe enough to be extreme, you have a serious limitation in any one of the following mental areas:

• the ability to understand, remember, or use information
• the ability to interact socially (including the ability to get along with others)
• concentration, persistence, or the ability to work quickly (including the ability to complete tasks), or
• the ability to take care of oneself (such as self-care activities) or adapt to new changes.

Intellectual Disabilities Caused by Spina Bifida

Many (but not all) people born with spina bifida experience varying degrees of intellectual disabilities. Some intellectual disabilities are mild, while other people with SB may suffer from severely diminished intellectual capacity.

If an individual's SB has caused an intellectual disability, he or she may be eligible for automatic approval under Social Security's listing for intellectual disorders or the listing for neurodevelopmental disorders.

The intellectual disorders listing requires that an applicant either have a full-scale IQ score of 70 or below, or a full-scale IQ score of 71-75 with a verbal or performance score of 70 or below. In addition, the applicant must also have significant deficits in handling tasks and responsibilities like understanding information and completing tasks quickly. For details on the listing requirements, see our article on disability based on intellectual disorder.

The neurodevelopmental listing can be used in cases of "borderline intellectual functioning," which is usually diagnosed by IQ test scores that are between 71 and 84. For details on the listing requirements, see our article on disability benefits for borderline intellectual functioning.

Evidence and Tests Required for Disability Based on SB

Social Security requires a lot of documentation for your symptoms and conditions, including medical records, school records, and information about your ability to perform "activities of daily living."

Medical records. Social Security will want your complete medical history, dating to when you first think you became disabled. Many disability claims are initially denied simply because the claimant did not provide sufficient evidence when they first applied. Be sure to supply Social Security with the following information along with your initial application:

• names and contact information for all the doctors who have treated you for symptoms related to your SB
• the names, addresses, and dates of admission to all hospitals where you received care for treatment of your SB
• copies of lab reports, MRIs, CT scans, EEGs, X-rays, or any other diagnostic exams
• a complete list of medications including dosages, side effects, and the name of the prescribing doctor
• copies of any prescriptions for assistive devices such as walkers or crutches, and
• a detailed description of how your SB affects your day-to-day life, including what kind of help you get from other people, any pain you experience, and how any other activities are limited by your disability.

Daily living assistance. If you require assistance with your daily living, provide the name of your caregiver and a complete description of the assistance you receive. If you live in a group home or nursing facility, your medical records from the facility will be sufficient.

IQ tests. Claimants who apply based partly on a low IQ should submit the results of any IQ tests they have had. The IQ tests most often used are the Wechsler Adult Intelligence Scale (WAIS) and the Stanford-Binet.

School records. Claimants who apply based partly on low IQ should also provide school records to show that the intellectual disability began before the age of 22, including report cards, diagnostic exams or reports, or any information about special education classes or an individualized education program (IEP). This information can generally be requested from the district where the individual went to school.

What If My Spina Bifida Doesn't Meet a Listing?

If you suffer from SB but it is not severe enough to meet one of the medical listings above, Social Security will prepare a residual functional capacity (RFC) assessment that details how your symptoms affect your ability to perform certain work-related activities, such as bending, reaching, stooping, sitting, standing, lifting, walking, balancing, and climbing. An RFC is created based on the medical records you have provided to Social Security and any examinations performed by a doctor hired by Social Security (called consultative examinations). Your RFC will be used to assess whether there are any jobs you can do.

For example, some patients with SB have clubfoot, which can limit the amount of time they are able to walk or stand. If your doctor says that you can walk or stand for less than six hours per day, you will be limited to sedentary jobs, according to Social Security's rules. (See our article on clubfoot and disability for more information.) Or, if you have severe scoliosis caused by your spina bifida that prevents you from lifting items, stooping, or bending, this would also limit the number of jobs you can do. (See our article on disability and scoliosis.)

People with milder forms of SB may be prone to bone fractures from even a mild injury. In this case, an individual would be unable to perform any jobs that exposed him or her to the risk of falls or that required the ability to lift even moderately heavy objects. These restrictions would preclude most warehouse work, light industrial work, or most janitorial positions. Milder forms of SB are also frequently accompanied by chiari malformations, which can also prevent people from engaging in full-time work.

Learn more about how Social Security uses your RFC to rule out jobs you can do (and then tells you the remaining jobs it thinks you can do).

Non-Medical Disability Requirements

In addition to the medical requirements for disability, you can't earn more than about $1,500 per month from work and your disability must be expected to prevent you from earning that amount for at least 12 consecutive months. Also, you must meet the requirements of either SSDI, an insurance benefit available to people who have worked a certain number of years, or SSI, a need-based benefit available to people who don't have a qualifying work history and who meet Social Security's limits on income and assets.

_{Updated January 4, 2023}