Age 16, Arkansas
Meet Esther. Estie was born with a unknown muscle disease. When she was 3 months old, she was adopted by her forever family, and at only 6 months her lungs collapsed. Estie has a tracheostomy and uses a ventilator to breathe, but this does not stop her!
Estie is entering the 11th grade, she sings in the choir, is in the chess club, and is a straight A student. Thanks to the Individuals with Disabilities Education Act (IDEA), Estie qualifies for an Individualized Education Plan (IEP) that provides things like school nursing and transportation which helps her to participate in school activities and has contributed to her success as an honor society student.
Medicaid cuts are Estie's family's greatest fear. They rely totally on medicaid for all her equipment, school nursing, and doctor appointments and procedures. Without Medicaid, they would not have the financial ability to provide for her.
Estie's medical conditions and disabilities do not stop her, but losing access to medical care and nursing assistance could. When she graduates from high school she will no longer have day time care. She would like to go to college, but would have to have someone with her at all times, which isn't currently an option covered in their state.
Estie speaks to others about what it’s like living with her disability and hopes to be a motivational speaker some day. In fact she's already gotten started. On June 26, 2018 Estie spoke at Little Lobbyist's first bicameral press conference.
You can watch it here:
Submitted by Lori Johnson, Estie's mother