Spina Bifida can be devastating for newborns and parents. As people with Spina Bifida age, they must live with the complications of the disease. If your child was born with Spina Bifida or if your own Spina Bifida has stopped you from working, you need to consider applying for Social Security Disability.

Types of Social Security Disability Benefits – SSDI and SSI

SSDI (Social Security Disability Insurance) is based on the credits from the work you have done in your life. You must be found disabled before your date last insured (DLI) to be found eligible for SSDI. Your DLI is calculated by counting your “quarters of coverage” from your earnings record. You must have 20 “quarters of coverage” of the last 40 quarters. Simply put, you must have worked 5 years of the last ten years (in general). In addition, Adult Disabled Children can be eligible for benefits off their parent’s account.

SSI (Supplemental Security Income) is a need-based program and you must meet income/asset standards in addition to being found disabled under the five steps above. In 2023, SSI is $914 per month for an individual and $1,371 for an eligible couple. SSI will be reduced by 1/3 if you are receiving financial help from others. In NC, SSI recipients are also entitled to Medicaid.

SSI is also available for disabled children and is evaluated under a different standard than adults. Children must have a medically determinable physical or mental impairment or impairments (including emotional or learning problems) which result in marked and severe functional limitations, and the impairment(s) has lasted or can be expected to last for a continuous period of at least 12 months or be expected to result in death. Child SSI terminates when the child turns 18. The claimant will then have to reapply and be evaluated under the above adult sequential evaluation.

Before you or your child are found eligible for SSDI or SSI, you must be found disabled under SSA’s Five Step Sequential Evaluation (for adults) or the child standard of disability (above).

Types of Spina Bifida

According to the Spina Bifida Association , Spina Bifida is the most common permanently disabling birth defect in the United States. Spina bifida, which literally means “cleft spine,” is characterized by the incomplete development of the brain, spinal cord, and/or meninges (the protective covering around the brain and spinal cord). Found here .

There are four types of Spina Bifida: Occulta (mildest), closed neural tube defects, Meningocele and Myelomeningocele (most serious).

Occulta is the mildest and most common form in which one or more vertebrae are malformed. The name “occulta,” which means “hidden,” indicates that a layer of skin covers the malformation or opening in the vertebrae. This form of spina bifida, present in 10-20 percent of the general population, rarely causes disability or symptoms.

Closed neural tube defects make up the second type of spina bifida. This form consists of a diverse group of defects in which the spinal cord is marked by malformations of fat, bone, or meninges. In most instances there are few or no symptoms; in others the malformation causes incomplete paralysis with urinary and bowel dysfunction.

In the third type, meningocele , spinal fluid and meninges protrude through an abnormal vertebral opening; the malformation contains no neural elements and may or may not be covered by a layer of skin. Some individuals with meningocele may have few or no symptoms while others may experience such symptoms as complete paralysis with bladder and bowel dysfunction.

Myelomeningocele , the fourth form, is the most severe and occurs when the spinal cord/neural elements are exposed through the opening in the spine, resulting in partial or complete paralysis of the parts of the body below the spinal opening. The impairment may be so severe that the affected individual is unable to walk and may have bladder and bowel dysfunction according to the National Institute of Neurological Disorders and Stroke.

Complications can arise from your Spina Bifida such as hydrocephalus or tethered cord. The treatments for Spina Bifida vary on the severity of the disease. Preventing infection of the exposed nerves/tissues is the first step and surgery usually follows. Fetal surgery can also be performed during pregnancy. After surgery, physical therapy, bladder and bowel dysfunction management, shunting and pain management are all treatment options.

Does Spina Bifida Qualify for Disability?

Simply being diagnosed with Spina Bifida will not automatically qualify you or your child for disability benefits. As with all impairments under Social Security Disability, the severity of your illness is more important than the name.

Social Security can find you disabled based on your Spina Bifida in different ways. The listings, the Medical Vocational Guidelines (The Grids) or on the combination of your impairments.

Under the listings, Section 11.00 Neurological-Adult (or 111.00 for children), can be used. Listing 11.08 discusses spinal cord disorders. this listing requires complete loss of function persisting for 3 months OR disorganization of motor function in two extremities that results in a extreme limitation in standing or walking OR marked limitation in physical functioning AND difficulties with mental functioning.

Listing 11.08, as with most listings, is difficult to meet. If you have complete loss of function or are unable to stand or walk, working is the last thing on your mind. Of the three ways discussed by 11.08, the marked limitation in physical and mental functioning is the most accessible to claimants.

But what is a marked limitation?  SSA has defined marked as “Marked” limitation also means a limitation that is “more than moderate” but “less than extreme.” It is the equivalent of the functioning we would expect to find on standardized testing with scores that are at least two, but less than three, standard deviations below the mean” via SSA.

In my experience, having occasional difficulties would not be enough to rise to the level of “marked.”   If you are frequently experiencing symptoms from your Spina Bifida (daily) and you are also having problems remember information or interacting with others or concentrating or taking care of yourself, you may meet 11.08.

If you do not meet a listing, and you are over 50, SSA can use “The Grids” to find you disabled if you are having problems walking, standing, sitting or lifting weight. Notes from your doctor about your restrictions are helpful.

The SSA can also use the combination of your impairments to find you disabled. As discussed above, Spina Bifida can co-occur with hydrocephalus or tethered cord syndrome. In addition, as we age, additional health issues can arise that complicate Spina Bifida symptoms, such as degenerative disc disease or neuropathy. The combination of your symptoms may eliminate work for you.

If your child was born with Spina Bifida, you should file for Child SSI as soon as possible on their behalf. If you were born with Spina Bifida and can no longer work because of your symptoms, you should file for benefits as soon as possible. The Bishop Law Firm represents clients with disability claims in Raleigh, NC and surrounding areas. Call us today for a free case review, (919) 615-3095. 

Also read Overview of the Disability Process