Also known as Acrocephalosyndactyly Type I, Apert syndrome is a rare genetic disorder that causes early and abnormal fusion of bones, especially in the head, hands, and feet. Infants with Apert syndrome are born with cranial and facial deformities. Other birth defects may be present as well. Intellectual deficits are sometimes present and children and adults with Apert syndrome often experience other complications, including hearing loss, sleep apnea, and chronic ear and sinus infections.
Individuals with Apert syndrome usually require multiple surgeries in infancy and early childhood. They often need specialized attention and care throughout childhood and sometimes into adulthood. Disability benefits can ease the financial challenges of caring for a special needs child, and many infants, children, and even adults with Apert syndrome are able to qualify for Social Security Disability (SSD) benefits.
Medically Qualifying with Apert Syndrome
There is no disability listing for Apert syndrome among the Social Security Administration’s (SSA’s) impairment list. This does not however mean that the condition cannot medically qualify a child to receive benefits. Adults who experience ongoing and severe complications from the condition can also meet the SSA’s eligibility rules.
To qualify medically for benefits, infants, children, or adults must:
- Meet or match a listed impairment in the SSA’s Blue Book manual
- Show through medical and other records that their disability is severe and:
- Prevents gainful employment for an adult
- Prevents participation in normal, age appropriate activities for children
Infants and young children with Apert syndrome clearly meet the requirements for medically qualifying, even if they do not match any listed condition in the SSA’s Blue Book.
Older children and adults with Apert syndrome however may need to demonstrate more clearly their disability by either matching or meeting a Blue Book listing or by proving through a functional capacity analysis that the combined effects of all their medical conditions cause severe impairment.
Apert syndrome or a related condition may meet or match one of the following disability listings:
- Sleep apnea – Section 3.10
- Intellectual deficits – Sections 12.05 and 112.05
- Hearing loss – Sections 2.10, 102.10, and 2.07
- Heart complications – Sections 4.00 and 104.00
- Congenital disorders affecting multiple body systems – Sections 10.00 or 110.00
Applying for Benefits and Getting Help with Your Claim
You can apply for disability benefits on behalf of a child by calling the SSA at 1-800-772-1213 to arrange an interview appointment for Supplemental Security Income (SSI) benefits. An SSA representative will complete the application for you, using information you provide.
If you are applying for benefits as an adult with Apert syndrome and related medical conditions, you may:
- submit a Social Security Disability Insurance (SSDI) application online at any time
- schedule an appointment to complete your application in person with the assistance of an SSA representative.
As a disabled adult, you may also qualify for SSI benefits. Keep in mind all SSI applications must be completed via a personal interview with the SSA.
Regardless of how you apply for benefits, getting SSDI with Apert syndrome is sometimes a very uncertain prospect. Dependent upon the applicant’s age and the extent of medical complications, a disability application:
- may be quickly and simply approved
- can take quite a long time and may even require filing an appeal if benefits are initially denied.
Work closely with your doctor or your child’s doctor to document thoroughly all of the medical complications Apert syndrome produces. You may also wish to get help with your claim from a Social Security Disability advocate or attorney, especially if the application is initially denied.