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Learn how to get Social Security Disability Benefits

Are you eligible for Social Security Disability? That can be a tricky question. For many people with congenital heart disease, getting access to Social Security Disability benefits is critical—but it can be difficult to navigate the system.

The Social Security Administration (SSA) makes decisions on Social Security Disability Income (SSDI) and Supplemental Security Income (SSI) based on a number of factors. It is very useful to have some understanding of the process and the criteria for decision before you apply. In some instances, it is also helpful to seek professional assistance before applying.
  • SSDI requires that you have worked long enough to have paid Social Security taxes but are not able to work now.
  • SSI is based on income and does not depend on your work history. It is designed for people who have little income and resources.
  • Get Organized.

    Start by getting all of your medical and employment information in one place. Get copies of all your records and develop a comprehensive, usable file.

  • Go to the SSA website

    Review the materials and forms available there or call 1-800-772-1213 to request a phone or in person interview.

Here are some important factors to consider when you are applying for either SSDI or SSI.

Are you disabled? SSA used five questions to answer that question.

  1. Are you now working? You cannot make more than $1,130 per month in earned income to be considered. (There is no limit on unearned income)
  2. Is your medical condition severe enough to interfere with your ability do your normal tasks at work?
  3. Is your condition listed in SSA’s Blue Book?
  4. Can you do the work you did before. If yes, you are not considered disabled.
  5. Can you do any other work? SSA looks at your age, education, experience and other skills to make this determination.
Your doctor can provide supporting evidence for your disability claim. Simply stating that you are disabled is not sufficient.

Compassionate Allowance Conditions

There are two groups of congenital heart patients included under the Compassionate Allowance Conditions. If you fall into one of these two groups, the SSA will expedite your application.

Expedited does not necessarily mean fast, but your submission will be reviewed more quickly than those who do not meet these criteria.

All single ventricle patients: These are individuals who have only one working ventricle (pumping chamber) in their heart. It includes anyone who has undergone a Fontan procedure. The listed diagnoses are:

  • Hypoplastic Left Heart Syndrome
  • Aortic Atresia 
  • Mitral Valve Atresia 
  • Pulmonary Atresia 
  • Tricuspid Atresia 
  • Single Ventricle (not covered above)

All Eisenmenger Syndrome Patients:  Eisenmenger Syndrome refers to patients born with many kinds of heart defects whose defects are not fully repaired. These individuals have persistent cyanosis (blueness). Their symptoms include:

  • Chronic low oxygen levels 
  • Blue lips 
  • Clubbing of the fingers 
  • Pulmonary hypertension 
  • Problems with blood  clotting

Understanding the application process

The process of applying for SSA benefits can be long, complicated and sometimes frustrating. Know that it takes an average of five months to have your records reviewed, so time matters. Here are some helpful hints for tackling the bureaucracy.

  1. Apply as soon as possible after becoming disabled.
  2. Organize your information and get all your records together. Keep copies of your records. If you have an electronic medical record that can be very helpful.
  3. Make sure the facts are accurate and verifiable.
  4. Send supporting information with your application. This can include copies of medical records, letters from doctors, office notes, lab results, echocardiograms, EKGs, chest CTs, cardiac catheterizations, heart MRIs, surgical reports, cardioversions, ablations, etc.
  5. Be truthful about how your condition impacts your everyday life and ability to work. Don’t exaggerate or minimize your situation.
  6. Be specific. Provide examples of how your condition affects your life. If it takes you all day to do the laundry, say that. Tell your story.
  7. Let your doctor know you are applying for disability. Your medical record must support your application. Ask your doctor to make notes on your chart about the specifics of your disability. Be aware that not all doctors are informed about this process, so you may need to teach your doctor how to support you.
  8. Keep a log. It should include information on your daily activities and how you are feeling—a list of medications, current and past, with start and stop dates. If you experience side effects, you should describe those as well—dates of doctor’s visits and any details of those visits that affect your situation.
  9. Follow your doctor’s advice and communicate what is happening to you. The doctor needs to include this information in the medical record.
  10. Keep a record of all your contacts and correspondence with the Social Security Administration.

Filling Out the Application

This is what you will need. Get it all together before you start actually filling out the application.

  • Social security number and proof of age, usually a certified birth certificate
  • Names, addresses and dates of places you have worked
  • Your most recent tax return
  • Name, addresses, phone numbers of doctors or treatment facilities where you received care—with dates of treatment
  • Names, doses and frequency of any medicines you are taking
  • Copies of medical records from all your doctors and treatment facilities for the last three years, including reports of any lab work, procedures or surgery, and office notes
  • A detailed letter from your doctor describing you, your condition and how it affects your ability to do normal activities and work. 

The letter is a critical part of the application. SSA decisions are often made based on what doctors and hospitals say about your condition. The letter should include:

  • Your doctor’s qualifications
  • The length of time you have been his/her patient
  • Your exact diagnosis and how it meets the criteria in the SSA Blue Book
  • A detailed medical history, examination results, lab findings, treatments and your response to treatment
  • An explanation of activities you can and cannot do at home and at work, with specific medical reasons for any limitation or disability you have, such as extreme fatigue or low oxygen levels.
  • Specific information on your ability to perform normal daily functions in your home.
  • Specific information on your ability to work, the hours you are able to work and any accommodations or limitations on your ability to perform the tasks necessary to do your job.
Filing the Applications: Are You Ready?

You can apply online, in person or by telephone.

The preferred way to apply is online.

Online Applications


This site provides instructions, information, a benefits calculator and an online application for SSA disability benefits. You will need to take four steps to file your application.

  1. Review the Adult Disability  Checklist
  2. Complete the online  Disability Benefit Application
  3. Complete the online Adult  Disability Report
  4. Complete the Authorization  to Disclose Information to the Social Security Administration (SSA Form-827)
  5. To schedule an in person or  telephone interview, or to apply by phone, call 800-772-1213.

Always double-check your information for accuracy and completion before hitting the submit button.

Don’t hesitate to schedule a telephone or in person interview if you have questions. Ask for a copy of whatever you submit if you apply by phone or in person.

Then What Happens?

  • Your application will be reviewed. All applications are reviewed, and decisions are made, by the State Determination Services Office in the state in which you live.
  • Don’t expect an immediate response. The decision can take five months unless your condition is covered by the Compassionate Allowances Listing. That review process is usually faster but does not guarantee approval.
  • If you are approved, you will receive information on how much you will receive and when your first check will arrive. You will also receive information on Medicare, which becomes effective 24 months after approval, and in some states on Medicaid.
  • If you are denied, you have the right to appeal the decision. Before appealing, you should discuss your case with the SSA and read the SSA document describing the appeals process. You may also consider employing an attorney who specializes in this area of the law. www.ssa.gov/disabilityssi/appeal.html