Caudal regression syndrome is a congenital disorder in which the lower spine does not develop properly in infants in the womb. It can vary greatly in severity, ranging from mild to extremely severe. Children affected by more mild forms of the disorder can often live fairly normal lives, while those afflicted with the more severe forms, types III and IV, suffer major birth defects and complications.
Children with types III and IV of the disorder meet the basic medical eligibility requirements for receiving Supplemental Security Income (SSI) benefits through the Social Security Administration’s (SSA) disability program. Disability must still be proven through standard application processes, and other technical criteria must also be met in order for your child to receive benefits though.
Symptoms and Treatments of Types III and IV Caudal Regression Syndrome
The more mild forms of Caudal Regression Syndrome may have few, if any, ill effects from the disorder. Those with types III and IV however experience very complex physical deformities and serious health issues as a result, including:
- Skeletal deformities
- Nerve impairment
- Heart defects
- Respiratory complications
- Limited mobility and flexibility
- Digestive complications
- Incontinence
Surgical repair of some defects is possible, though the most serious cannot be corrected and are therefore treated through other means. Disfigurement often requires the amputation of the lower legs to allow the afflicted child to sit and move more easily.
For those with incontinence complications and malformation of the bladder, anus, and intestines, permanent colostomy and catheterization are necessary. Other treatments include supportive care and therapies for addressing complications, including heart and respiratory support and medications, and the use of mobility assistance devices.
Applying for SSD with Caudal Regression Syndrome Types III and IV
As Types III and IV of Caudal Regression Syndrome result in severe deformities and complications, these forms of the disorder are inherently disabling and therefore medically qualified for Social Security Disability (SSD) benefits. Caudal Regression Syndrome is additionally a condition that is part of the SSA’s Compassionate Allowances (CAL) program, which is designed to expedite the review and processing of claims filed for inherently disabling conditions. Even with these measures in place however, you must still complete the application process and support your claim with substantial medical documentation.
In reviewing your child’s disability application, the SSA will compare the medical records of your case file with the listing in the Blue Book that appears under Section 110.00. This listing covers conditions that affect multiple body systems. There is no dedicated listing for Caudal Regression Syndrome and therefore no specific outline for the essential medical records and evidence which must be included in your claim.
Other listings may also be referenced by the SSA when reviewing a disability application based on Caudal Regression Syndrome, including:
- Section 10.00 in Part A of the Blue Book - adult listing of conditions that affect multiple body systems
- Section 10.08 in Part A - catastrophic congenital abnormalities
It is important to understand that when applying for SSD benefits on behalf of a minor child, the benefits applicable in your claim are SSI benefits, rather than Social Security Disability Insurance (SSDI). SSI is a need-based program. As such, there are medical and technical criteria for eligibility. The technical criteria for the SSI program require the SSA review the income and assets of the parents and the child, and benefits are only available to children with minimal financial resources.
Getting Help with Your Caudal Regression Syndrome Disability Claim
Though CAL program conditions are rarely denied benefits, it does sometimes occur. Usually denial happens due to a lack of substantial medical evidence or due to missing forms or other data. Seeking the help of a disability advocate or attorney can be beneficial as he or she can assist you in completing the application process and in collecting the necessary documentation for proving disability.
