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Medicaid Matters for Kids Mondays - Abby

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Abby’s mom, Erika. Abby is a Speak Now for Kids Family Advocacy Day alum and current patient at the Wolfson Children’s Hospital.

My daughter, Abby, has Down syndrome and cerebral palsy as a result of a brain tumor that was removed when she was 9 weeks old. She cannot walk or crawl and relies heavily on us for mobility. Abby has multiple therapy sessions and medical appointments each week, which makes it hard to juggle our work schedules and maintain a good family balance.

Abby had private insurance as a baby and it was difficult to make the copayments required for her frequent MRI scans, specialist appointments, medical procedures, hospital admissions and unplanned ER visits. Our private insurance had caps on the number of therapy sessions per year and it was difficult to get medical equipment covered fully.

Medicaid gives Abby a sense of independence by allowing her to have leg braces for stability and the therapy she needs to learn to walk. Through Medicaid, Abby also has access to different types of specialists (e.g., neurosurgery, rehabilitation, GI, ENT, ophthalmology, orthopedics and endocrinology) to reach her best quality of life. Without Medicaid, our family would definitely be struggling financially.

Before I had Abby, I never paid much attention to health care and never thought I’d have a child with special needs and medical complexities. Now my eyes have been opened to how important this program is for children, especially those with special needs.

Today, I want to amplify the importance of Medicaid by advocating for children’s health. In this spirit, our family participated in 2018 Speak Now for Kids Family Advocacy Day where we joined forces with other families to speak with our senators and representatives about the importance of Medicaid. We are continuing to tell our story about how Medicaid has provided care to keep Abby healthy and decreased the financial burden on our family. We want to show that this program fills the gaps where private insurance may fall short. We hope to partner with other organizations in the future and meet with our local government officials.

Abby is incredibly brave and strong. We were told her condition was terminal and she proved us all wrong. She is motivated to learn, to communicate, and to walk. At almost 3, Abby has already surpassed everything that we thought she would be able to do. She has many challenges, but she amazes us every day!

Check out Abby’s original 2018 Speak Now for Kids Family Advocacy Day biography.


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