Getting Disability Benefits for Spina Bifida
If your family has limited income and resources, your child with spina bifida will likely qualify for SSI disability benefits.
Spina bifida is a disease that affects children and can be very disabling. If your child has spina bifida, he or she may qualify for SSI disability benefits by applying through Social Security.
Disabling Symptoms of Spina Bifida
Spina bifida is an impairment of the spine that develops in the womb. It is often detected before the child is born. There are three forms of spina bifida, and the severity of the impairments depends heavily on the type of spinal malformation the child has.
This is the most severe form of spina bifida and is usually what is meant when people use the term “spina bifida.” The spine of the child does not close properly and remains open along several of the sections of the spine in the middle or lower back. Through these openings, both the membrane and the spinal cord are exposed, forming a sac on the child’s back. Only in some instances does skin cover the sac. The exposure of the membrane and spinal cord leave the child prone to life-threatening infections. Newborns with spina bifida often have partial or complete paralysis of the legs, weakness in the hips, legs, or feet, abnormal legs or feet, such as a clubfoot, and hydrocephalus.
As the child ages, there will be new problems that arise due to the spine abnormality. Puberty is a time when many issues arise, as this is a period of rapid growth. There can be loss of function and orthopedic problems, including scoliosis, deformities of the foot or ankle, dislocation of the hips, and joint tightness or contractures.
Spina Bifida Occulta
This is the least severe type of spina bifida. It occurs when there is a small gap in between one or more of the bones that make up the spine. The spinal nerves are not generally affected by these gaps and therefore children generally do not show signs, symptoms, or neurological problems associated with this type of spina bifida. Most individuals experience no lasting symptoms from this form of spina bifida, and it often goes undetected.
This is a very rare form of spina bifida that occurs when the meninges, which are protective membranes around the spinal cord, pop through the space in the spinal cord. The membrane can be removed through surgery and generally causes little to no damage to the nerves in the spine.
Receiving SSI Benefits
If your child suffers significant impairment from spina bifida, he or she may be able to qualify for Supplemental Security Income (SSI) on account of disability.
In order to qualify for SSI, the child’s family must meet certain financial requirements. Once those qualifications are met, your child’s impairments will be evaluated based on medical evidence in the child's medical records. Children can qualify for benefits when they meet the requirements of one of Social Security's impairment listings or if they functionally equal the listings.
Meeting a Listing
There are several ways for children with spina bifida to meet a disability listing.
Compression of spinal nerve root. For children whose spina bifida compresses the spinal nerve root, Social Security's Listing 101.04 (Disorders of the spine) may apply. The requirements of this listing will be met if your child has medical evidence that shows evidence of nerve root compression that is characterized by:
- limited movement of the spine
- loss of motor function, and
- a positive leg raise test (if the spina bifida affects the lower spine).
Neurological impairments affecting movement. If your child suffers from neurological impairments due to the spina bifida or associated complications, those impairments should be evaluated under Listing 111.00, which covers neurological impairments for children.
Specifically, Listing 111.08 (Meningomyelocele and related disorders) applies to spina bifida. To meet this listing, your child must have at least one of the following:
- Motor dysfunction that prevents the child from being able to functionally walk or use his or her arms.
- A less severe motor dysfunction plus at least one of the following
- incontinence that is not appropriate for your child’s age (either urine or fecal) and is more than just occasional, and/or
- an IQ of 70 or less.
- All four extremities being affected by impairments including spasticity, weakness, or paralysis.
- Hydrocephalus that leads to abnormally high fluid pressure in the brain and causes abnormal mental or nervous system development
Complications from spina bifida. If your child has complications from spina bifida that have caused additional impairments, he or she may be able to meet the impairment listing for one of the complications. Some of the possible complications include:
- cerebral palsy or other impairments due to decreased oxygen to the brain (caused by the difficult delivery many newborns with spina bifida face)
- learning disabilities
- skin problems
- gastrointestinal disorders
- frequent urinary tract infections (UTIs)
- loss of bowel or bladder control
- meningitis, and
- limited or no use of the legs.
For more information, click on the appropriate link above.
Functionally Equaling a Listing
Those whose spina bifida is not severe enough to meet a listing, but still causes significant impairments due to a combination of problems, may be able to receive benefits in another way. If your child has an extreme limitation in one area of funcitoning, like movement, or severe limitations in more than one area, like movement, learning, and/or self-care, he or she can qualify for SSI by "functionally equaling a listing."
A child whose spina bifida causes limited use of the legs, perhaps along limited use of other body parts, depending on the part of the spine that is affected, will be extremely or severely limited in being able to move about. These physical impairments may limit your child’s ability to perform functions that others their age can perform.
In addition to physical limitations, mental limitations are often present with children with spina bifida. Learning disabilities and other developmental delays may prevent children from functioning at a level that is appropriate for children their age, and this would count as an extreme or severe limitation in a second area of functioning.
For more information, see disabilitysecret.com's article on functionally equaling a listing.
When Your Child Turns 18
When children turn 18, they are no longer be able to receive benefits as a child. If your child's impairments continue, they will have to be reevaluated for benefits based on the adult listings. For adults with spina bifida, there is a listing in the Social Security “Blue Book” under Listing 1.04 (Disorders of the spine). This listing is very similar to the listing found for children. If neurological impairments persist into adulthood, those impairments should be evaluated under the appropriate section in Listing 11.00 for Neurological disorders. For more information, see disabilitysecret.com's article on age 18 redeterminations.