Apply for Social Security disability benefits as soon as you become disabled. The application process can take six to eight months, so it’s important to start your application as soon as you can. Tell your PH care team if you plan to apply for disability and keep them up to date on the process.
Consider hiring a lawyer or non-lawyer representative to help you through the process. They should be able to help you organize and present evidence and testimony persuasively. Although the hearings aren’t very technical, it is best to give a presentation rather than just answering questions.
Explore your options for representation
The National Organization of Social Security Claimants’ Representatives has more than 3,900 members, such as attorneys and other advocates, who represent Social Security and Supplemental Security Income claimants. Other options include legal aid services in your state and the Legal Services Corp., which funds nonprofit legal aid organizations in every state and territory.
Build your case
Keep detailed records of your experiences with pulmonary hypertension, or any other debilitating disease. Your records should include:
- A log of your medical activities.
- A list of your medications, medication changes, restrictions you might have, and how often you take the medications.
- A log of how much time you spend traveling to and from the doctor or clinic and how much time you spend at each medical appointment.
- A description of how PH affects your day-to-day activities, emotions and quality of life. Consider how much time daily activities take, how much you need to rest afterward and which activities you no longer can complete or need help with. Don’t exaggerate your condition, but don’t minimize it either.
- Copies of your correspondence with the Social Security Administration.
When you think something is wrong, like a new symptom or unexpected side effect, ask your care team to add your concerns to your medical records. Make sure you follow their medical advice.
Additional information for your case
For non-medical requirements, you will need:
- Social Security number and proof of age (birth or baptismal certificate).
- Your most recent tax return.
- Summary of your employment history. If you have a resume, you can use it for the initial application. You also will need to complete a work history form with more in-depth information.
For the medical requirements, you will need:
- Names and doses of your medications.
- Names, addresses and phone numbers of doctors, hospitals, clinics and institutions where you have been treated.
- Treatment dates and your patient/chart number from each doctor’s office. Call your doctors’ offices to get this information.
- Medical records, including results from lab work, x-rays, echocardiograms, sleep studies, CT scans of the chest, arterial blood gasses and angiograms.
- A thorough, well-written letter from your primary physician might help your case, although it’s not required. The letter should explain your condition in detail, how your symptoms affect your daily life and ability to work, the expected outlook for your disability and how medical evidence supports their professional opinion.
When completing the application, fill out every question in detail and make sure you answer the question being asked.
How to file
Filing online is the best option, if you have internet access and feel comfortable navigating the SSA website. If you prefer to apply by phone or in person, call 800-772-1213, or your local Social Security office, to schedule an appointment.
Start your application
Follow up
If you applied in person or by phone, you will receive a copy of the report submitted with your application. Read the entire report. If there are errors, don’t sign until the SSA corrects the errors.
If anyone helped you fill out forms, whether a representative from SSA or a nonprofit organization, ask the Social Security Administration for printouts of everything you submitted. Read the documents carefully to make sure the written reports match the truth of your case and include all medical evidence about your condition.
No matter how astute and professional your representative is, there could be misinterpretation of what you said and what they heard. Getting it right before the evaluation will save you time and effort later on.
Determination process
After you submit your application, the Social Security Administration reviews it first to make sure you meet the non-medical program requirements.
If you meet those requirements, SSA will send your application to your state’s disability determination services office. The state agency reviews your medical records to determine whether:
- You’re working.
- Your medical condition is severe.
- Your condition is on the Social Security Administrations impairment list.
- You can do the work you did before.
- You could do other type of work.
If the SSA and your state approve the application, you will receive a letter that states the amount of your benefit and when your payments will start. If they deny your application, the letter will explain why and tell you how to appeal.
If you’re approved, you will receive disability benefits until your health improves or if you earn too much. The SSA will review your condition every few years, depending on whether your condition is expected to improve and to what extent. Most PH patients should expect a review every three to seven years. However, if you had a transplant before your disability claim was approved, SSA likely will review your claim about a year later to see how you are doing.
