If at First You Don’t Succeed…
Family’s Persistence Leads to Social Security Approval for 18 Year Old Daughter
By: Marge Lanzola
Caregiver and Mother to Emily Lanzola
Emily, Marge and Dave Lanzola
It’s Hard to Qualify for SSD without a Work History
When Emily was diagnosed with primary pulmonary hypertension in September 2008 at the age of 17, we applied for Social Security Disability for her. However, she did not qualify because at 17, she had not contributed to Social Security due to lack of work history. Additionally, because she was considered a child, she did not qualify because our (her parents’) income and financial resources were over the eligible limit. We were advised to apply for Social Security Income (SSI) once she became an adult because at the age of 18, only her individual income and resources would be considered. In the meantime, she was diagnosed with hyperthyroidism (Graves Disease) in January 2009.
Exploring Other Options: Supplemental Security Income
After she turned 18 in February 2009, Emily applied for SSI. Several sources said to expect denial on the first application and that is exactly what happened. In May we were notified that Emily was not eligible because “although your child’s conditions may result in some problems, they do not cause marked or severe functional limitations.” Emily then filed a request for reconsideration, and we expected the application to be denied again.
SSI is a federal income supplement program administered through the Social Security Administration (SSA) that is designed to help aged, blind or disabled people who have little or no income. Although different from Social Security Disability (SSD) because it is funded by general tax revenue and not Social Security taxes, you must still qualify as disabled as defined by SSA in order to receive SSI payments.
In the meantime, I contacted ACCESS, a patient advocacy group that provided free Social Security representation to PH patients. The ACCESS staff was very helpful and provided us with a template letter, which we sent to Emily’s physician. He submitted the letter to the SSA, highlighting her pulmonary arterial pressure numbers and the seriousness of the disease. We also submitted copies of right heart catheterization lab reports, highlighting the same information. Emily’s medical lab reports fit the requirement, demonstrating the severity of her condition. ACCESS also referred us to an attorney, but we had already designated one.
On December 24, 2009, Emily received approval for disability and began to receive monthly SSI payments as well as retroactive payments since February 2009. After ten months, it was worth all of the time, paperwork and anxiety.
The SSA uses a Listing of Impairments (a list of qualifying diseases) to help determine disability. PH is referenced on this list with guidelines used for determination. For example, severe pulmonary hypertension is described as “mean pulmonary artery pressure greater than 40 mm Hg.”
The most difficult part of the process was the lifestyle survey, a part of the request for reconsideration. Emily had to provide a detailed description of how her life has changed regarding every aspect of her life, such as social situations, personal care, activities, etc. Although Emily has maintained a positive outlook since she began treatment and does not look for negative aspects of the disease, we highlighted several situations in everyday life so she could address the issues and complete the form. For example, Emily enjoys cooking but is aware that she must protect the pump and tubing from heat. Her daily routine has to include time to prepare Remodulin and maintain the catheter site. These are examples of challenges to a patient’s normal lifestyle that could possibly help a patient’s case.
Recently PHA worked with the SSA in creating an informative video about pulmonary arterial hypertension. The video, which can be found on PHA’s YouTube site, contains a description of the disease and its seriousness. We’re not sure if it was part of the decision process for Emily’s case, but it may help patients who apply for the benefit in the future.
Looking Towards the Future
Our next hurdle will be an application for Medicaid because, although we are fortunate to have good health insurance, Emily will probably reach the lifetime maximum on her medical insurance benefits.
Emily is now attending her first year at The College of Wooster and is planning to become a physician. In fact, she made the Dean’s List her first semester! Her drive and motivation will not let PH stop her from following her dreams. We pray every day for a cure, and we appreciate all of the work PHA is doing to support research, patients and caregivers.
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