Spina bifida (SB) is a congenital (present at birth) neural tube defect, a disorder that can involve the spinal cord or 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 and 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 most 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 (called a “medical listing”). Because SB involves the spinal cord, sufferers frequently experience extensive musculoskeletal symptoms that may qualify them under Social Security's medical listing for disorders of the spine. If an applicant’s cognitive ability is severely impaired because of SB, it may also be possible to qualify under Social Security's mental retardation listing.
The most obvious complication of SB is its affects on the spinal cord. The SSA will automatically approve your claim for disability based on your SB if your spinal cord is compromised and you experience one of the following sets of symptoms from the spinal disorder listing:
- nerve root compression with pain, limited spinal movement, muscle weakness or wasting, loss of feeling or reflexes, and a positive straight-leg test
- spinal arachnoiditis, a chronic pain disorder caused by the inflammation of the membranes that cover the spinal cord, that is confirmed by laboratory or surgical findings, that results in severe pain, and that requires you to change positions at least every two hours to manage the discomfort, or
- lumbar (lower back) spinal stenosis, narrowing of the spine that causes neurogenic claudication (pain and weakness in the buttocks, thighs, legs, and feet) and requires you to use a walker, two crutches, or two canes to walk.
Children. There is a specific listing for children with spina bifida, Listing 111.08 (Meningomyelocele and related disorders). To meet this listing, your child must have at least one of the following:
- Severe motor dysfunction that prevents the child from being able to walk and stand effectively or use his or her arms or fingers
- Moderate motor dysfunction plus one of the following:
- an IQ of 70 or less
- age-inappropriate incontinence.
- Having both arms and both legs affected by impairments such as weakness or difficulties with movement, or
- Hydrocephalus that causes abnormal mental or motor development.
Adults. In order to win automatic approval for disability based on any neurological symptoms of your SB, you must 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 chronic difficulty with walking and standing or using your arms and hands to perform gross movements (such as lifting, reaching, walking) and dexterous movements (such as writing, typing, tying your shoe, buttoning your clothes).
You might be able to get disability under the listing for neurological impairments if your SB causes you chronic difficulty using your muscles to do everyday activities like cooking, cleaning, getting dressed, shopping, or taking care of your personal hygiene (shower, shaving, and using the restroom).
Many (but not all) people born with SB experience varying degrees of intellectual disabilities. Some intellectual disabilities are mild, while other people with SB may suffer from severely diminished intellectual capacity (which the SSA refers to as “mental retardation”).
If an individual's SB has caused an intellectual disability, he or she may be eligible for automatic approval under the SSA’s listing for mental retardation. To qualify under this listing, the individual's intellectual disabilities must have been evident before the age of 22 (usually proven with school records) and the individual must:
- need help taking care of himself or herself and with tasks like eating, drinking, personal hygiene, and dressing, and is unable to follow directions to the extent that he or she cannot take an IQ test
- have an IQ of 59 or less
- have an IQ of 60 through 70 along with a mental or a physical condition that makes it extremely difficult to do work-related activities
- have an IQ of 60-70 that causes problems with activities of daily living, getting along with or communicating with other people, or focusing, concentrating, and completing tasks in a normal amount of time.
Evidence and Tests Required for Disability Based on SB
Daily living assistance. If you require assistance with your daily living, you must 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 suffice.
IQ tests. The SSA is particular about the types of IQ tests it will accept as evidence of your intellectual disability and how the tests must be administered. If you are unsure whether you have the proper evidence, you should consult with an attorney who specializes in Social Security Disability law.
School records. If an individual applies for disability under the listing for mental retardation, it is important that he or she provide the SSA with the correct evidence so that the agency can properly decide the claim. For example, to show that the intellectual disability began before the age of 22, school records, including report cards, diagnostic exams or reports, or any information about special education classes or an individualized education program (IEP), should be submitted to the SSA. This information can generally be requested from the district where the individual went to school.
Medical records. Also, you must provide the SSA with your complete medical history, dating to when you first alleged 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 the SSA 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.
What If My SB Doesn’t Meet a Listing?
If you suffer from SB but do not meet a medical listing, you still may win your claim for disability. The SSA will look at your work history and your medical record to determine if you can still do your old job. If it thinks you can, your claim will be denied. However, if it feels you can no longer do your past work, it will determine what, if any, other jobs you can do.
To determine this, the SSA will prepare a residual functional capacity assessment (RFC) 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 the SSA and any examinations performed by an SSA doctor (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 four hours per day or less, you will be limited to sedentary jobs, according to the SSA's rules. (See our article on clubfoot and disability.) 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 tell you the remaining jobs it thinks you can do).
Non-Medical Disability Requirements
In addition to the medical requirements for disability, you cannot earn more than $1,040 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 a significant work history with employers that paid taxes to the SSA, or SSI, a need-based benefit available to people who don’t have a qualifying work history and who meet the SSA’s limit on income and assets.