This article was written by Molly Clark with the Social Security Administration.  She emailed me and asked if I would share some info on SSA Disability Benefits for parents who have kids with Congenital Heart Defects. Stevie does not receive these benefits, but I feel like if there’s any way I can make the process easier (or even just easier to understand) for people going through what is sure to be overwhelming, I will.  I think the information is useful so I’d like to share it with you.  If you have any questions, feel free to email Molly or myself.

Disability Benefits and Congenital Heart Defects in Children

Parenting a child with a congenital heart defect can be mentally, physically, and financially exhausting. Because congenital heart defects range in severity, one child with a congenital heart defect may only require periodic check-ups while another child with a congenital heart defect may have to undergo invasive surgery and receive ongoing medical treatment.

Depending on the extent of your child’s condition, his or her medical bills can quickly become expensive. Unfortunately, not all families will be able to cover these costs. If you find that you cannot support your child’s medical needs, you may be able to qualify for Social Security Disability (SSD) benefits on his or her behalf. The following article will provide you with the information needed to begin this process.

Childhood Disability

Adult eligibility for disability benefits is based on an individual’s ability to work. Children on the other hand, are evaluated based on their development and on their everyday activities and abilities.

To meet the SSA’s definition of disability, your child must have a physical or mental condition or that causes severe functional limitations and is expected to last at least one year or result in death. If you aren’t sure whether or not your child is disabled by his or her congenital heart defect, consider the following questions:

• Is your child unable to perform many age-appropriate activities?
• Is your child extremely limited by his or her condition?
• Does your child require extensive support in order to perform age-appropriate activities?
• Do your child’s treatments interfere with your child’s daily activities?

Medical Eligibility

In addition to meeting the basic definition of disability, your child must also meet specific medical requirements. These requirements can be found in the SSA’s blue book. The blue book is a list of potentially disabling conditions and medical requirements needed to qualify for benefits. Congenital heart defects fall under section 104.6 of the blue book. This section is titled, Congenital Heart Disease and covers the following conditions:

  • Cyanotic heart disease
  • Secondary pulmonary vascular obstructive disease
  • Symptomatic acyanotic heart disease, with ventricular dysfunction
  • A congenital defect that requires surgery in infancy

It is important to note that infants that require surgery qualify for benefits for a period of at least one year. Their condition will be evaluated on an annual basis to determine if they remain eligible for benefits.

It is also crucial to note that if your child is waiting to receive or has received a heart transplant, he or she automatically meet the medical criteria for receiving SSD benefits. Again, for a year following the transplant surgery, your child remains eligible. Annual re-evaluations of eligibility occur thereafter.

Technical Eligibility

The Social Security Administration offers disability benefits through two separate programs—SSDI and SSI. To qualify for SSDI benefits, applicants must have a thorough employment history and must have made adequate tax contributions. For this reason, children typically only qualify for SSI on their own record.

SSI or Supplemental Security Income is a needs-based benefit program that offers financial assistance to blind, elderly, or disabled individuals who earn very little money. Eligibility for this program is dependent upon strict financial limits. To qualify for SSI, an applicant’s earned income, unearned income, and financial resources will all be evaluated. In the case of a child, a portion of his or her parents’ income will be considered. The process that SSA uses to allocate a parent’s income to a child’s record is called deeming.

The Application Process

To apply for disability benefits for a minor child, you must complete an interview with an SSA representative. This is done by appointment only and is usually completed in your local SSA field office.

To schedule your appointment, contact your local office directly or call the SSA’s main helpline at 1-800-772-1213. It is important that you schedule your interview as soon as possible because the next available appointment may be several months away. While you are waiting to attend your child’s interview, you should review the Child Disability Interview Checklist, and collect all the necessary documents

At your interview, you will be able to complete the Child Disability Report and the Application for SSI. Both of these forms are a required part of the application process. You should fill these out thoroughly, with as much detail as possible. Any missing or incomplete information may result in the denial of your child’s application.

Once you submit your child’s claim, it may be months before you receive a decision. Although your child may be approved after his or her initial interview, you should be prepared for the possibility of a denial. If this happens, do not panic. You can appeal the SSA’s decision within 60 days of receiving your denial letter.

While the application for disability benefits may seem overwhelming, many parents find that benefits help them provide the right care for their child.