“We’ve spent most of her life waiting for the help we need, for the wellbeing of our family.”
Soojung teaches middle school math and has three wonderful children. Her middle child, Alice, has Rett Syndrome, and has severe seizures, scoliosis, and uses a G-tube for nutrition, fluids, and medications. Alice has had many major and minor surgeries throughout her childhood, and every time Soojung and her husband requested at-home nursing care for her recoveries, it was denied by private insurers.
Alice’s pediatrician sat Soojung down and said, “You can’t go on like this.” The round-the-clock care and the toll of the stress was overwhelming them.
With the pediatrician’s help, Alice was finally accepted for services through the Medicaid program when she was 11 years old. Night nursing services led to a great improvement in Alice’s health, keeping her out of the hospital for the first year in her life. Soojung went back to the classroom, where she loves teaching math. And today, with the addition of day nursing services, Alice is 15 years old and able to participate in school, at home during 2020, and in-person in 2021 while Soojung teaches her students.
The Arc is fighting to make sure no family has to wait years for services that improve a child’s health and ability to thrive in the community.
“My daughter has the right to receive an equal chance of living her life, and Medicaid provides that extra help she needs to survive, learn, and thrive. The Arc’s work is so critical to ensure that Alice has a fulfilling life.”
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