Social Security

Social Security Disability Insurance was created in 1956, just as the US was beginning to recover from the Great Depression. Gainful employment was still scarce, and the federal government recognized that a new “safety net” was required for those in need.

In essence, Social Security created a taxpayer-funded pool of resources for people unable to work because of a physical disability. Social Security still exists in that form today, but few people know that many families with disabled children are eligible to receive financial assistance, as well.

While you may take issue with the government calling birth defects a “disability,” many congenital abnormalities are covered by Social Security Disability Insurance. The government recognizes that severe birth defects can be a significant financial burden and, for some families, offers help.

Is Our Family Eligible For Social Security Disability Income?

Whether or not your family is eligible to receive Supplemental Security Income (SSI) benefits is a complicated question, and can only truly be answered with the guidance of your physicians, craniofacial team and the Social Security Administration.

The SSA will also take your family’s income, assets and work history into account before deciding if you qualify for benefits.

There’s no clear-cut answer as to which birth defects will be eligible, either. The Social Security Administration operates on a case-by-case basis. With that being said, the Administration’s “Blue Book” presents descriptions of qualifying disabilities in varying degrees of specificity.

Below, we’ve provided short explanations of the two disability categories under which most children with orofacial clefts qualify:

Special Senses & Speech

This category covers disorders and impairment of vision, hearing, speech and language.

Most children born with orofacial clefts who qualify for SSI will do so under this category. Benefits are usually granted to children who demonstrate a “marked limitation in speech or language” or a “medically determinable impairment that causes hearing loss.”

There are numerous different tests that the Social Security Administration will accept as evidence of hearing or speech impairment but, needless to say, all must be conducted by a medical doctor.

Growth Impairment

The “growth impairment” category covers children who fail to grow properly.

Usually, a child will be found to qualify under this definition after their height and weight is compared to the distribution on a standard growth chart, like these ones for children between birth and two years old and this one for children over two.

Some children with orofacial clefts have difficulty feeding and, in rare cases, are diagnosed with “failure to thrive.”

How Do We Apply?

In most cases, you can apply through a local field office. You can search by zipcode on this page for the nearest office or apply online by clicking here.

Your application will be sent to a Disability Determination Services (DDS) office, usually operated by State governments. The DDS’ only job is to locate and review medical evidence, and then make a determination as to whether or not your child is considered “disabled” under the law.

For most families, the DDS will first contact your child’s own doctors for proof of disability. If the results are unsatisfactory, they will schedule your child for a consultative examination. This is a standardized exam, but it can usually be conducted by your own doctors.

After gathering all the necessary evidence, the DDS will make an initial determination on your child’s “disability.” If they consider your child “disabled,” your file will be sent back to a local field office, where your benefit amount will be determined and payments will begin.

If your child was found not disabled, you can appeal the decision.

How Long Will The Application Process Take?

DDS can take up to three to five months to make a decision on a child’s disability. But there are certain exceptions to this waiting period. If your child is HIV positive, was born with a birth weight under 2 pounds and 10 ounces or has:

  • Total deafness
  • Total blindness
  • Muscular dystrophy
  • Cerebral palsy
  • Down syndrome
  • Severe mental retardation (children seven and older)

you can be eligible to begin receiving SSI benefits immediately, and for up to six months. During this period, DDS will determine your child’s disability and then make a final ruling.

You can find a detailed overview of Supplemental Security Income on our sister site, CleftSmile.org.