January 11, 2023 by Natalie Cochran
Teenager Denied Social Security Insurance Benefits While Living with a Rare Disease Disability
At 12 years old, Mara was diagnosed with a rare disease, Takayasu Arteritis, which left her unable to walk. She was told she would be disabled for the rest of her life. At 20 years-old, the Social Security Administration (SSA) determined her diagnosed conditions were not severe enough to warrant a finding of disability, and Mara was denied Social Security Insurance (SSI). Lone Star Legal Aid (LSLA) Staff Attorney, Channing Guidry, represented her, seeking an appeal of this decision.
As a teenager, Mara continued to suffer from Takayasu Arteritis and IgM Nephropathy, two conditions that eventually prevented her from standing, walking, and having energy. While she has improved over time, she is still unable to hold full-time employment. Mara had been receiving SSI benefits since 2012, but received a letter from SSA in November 2019 stating they were going to discontinue her benefits.
With only one functioning kidney and inflammation in her body, Mara is required to take an infusion every two weeks, which prevents her from getting out of bed for at least half a day. She has medical appointments about once a month, sometimes more. Attorney Guidry suggested she journal on her “bad days” to illustrate the hardships she faces with basic day-to-day activities, while also living with rare diseases.
Over a two-year span, Mara documented symptoms of her conditions and medical visits, and Attorney Guidry prepared for the ALJ hearing. At an ALJ hearing, a judge will ask witnesses, such as physicians or other experts, to attend the hearing and provide testimony. Attorney Guidry gathered medical records from Mara’s neurologists, cardiologists, and doctors specializing in Rheumatology and Nephrology. The medical evidence, along with Mara’s journals, resulted in a Fully Favorable Decision. Her benefits were reinstated.
*Names have been changed to protect the identity of the client.
Lone Star Legal Aid (LSLA) is a 501(c)(3) nonprofit law firm focused on advocacy for low-income and underserved populations by providing free legal education, advice, and representation. LSLA serves millions of people at 125% of federal poverty guidelines, who live in 72 counties in the eastern and Gulf Coast regions of Texas, and 4 counties in Southwest Arkansas. LSLA focuses its resources on maintaining, enhancing, and protecting income and economic stability; preserving housing; improving outcomes for children; establishing and sustaining family safety, stability, health, and wellbeing; and assisting populations with special vulnerabilities, like those with disabilities, the aging, survivors of crime and disasters, the unemployed and underemployed, the unhoused, those with limited English language skills, and the LGBTQIA+ community. To learn more about Lone Star Legal Aid, visit our website at www.LoneStarLegal.org.
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