Claire

Age 14, Washington D.C.

Meet Claire. Claire loves ice cream, fashion magazines, shoes, anything Disney, swimming, and laughing with her siblings. She has an incredible laugh. She loves books and has earned the nickname "the little Professor" at school.

Claire has a rare genetic disorder, microduplication of Chromosome 2p. Although there are only two known cases in the entire world, many of the resultant medical conditions are more common. Claire has a number of diagnoses, including: autism, asthma, epilepsy, hypotonia, and intellectual disability. She is completely reliant on others for all of her needs and care.

Claire was born in 2006, before the ACA was law. We constantly worried that Claire would reach her caps on care or that if my husband were to lose his job Claire would be uninsurable due to the multiple pre-existing conditions with which she was born. Before the ACA, we had to make all of professional and life decisions based on ensuring Claire's access to health insurance. 

Claire depends on Medicaid to cover significant costs necessary for her care that are not covered by private insurance. These include home health care necessary to provide both personal care to keep her safe within the home and nursing care, the ABA therapy that has opened up a new world for her, and some durable medical equipment that is not covered by private insurance but that allows her to be a part of her community and live at home. Medicaid even covered the cost of a hearing aid that private insurance denied. Medicaid also covers some of her educational costs, including school-based therapies.

Claire attends a school for children with complex medical needs and multiple and severe disabilities. She receives multiple therapies at school as well as special education services. Some of the cost of her education is covered by Medicaid. She has a 1:1 aide at school.

Claire uses a wheelchair and relies on ADA protections to access the community. While we appreciate the accommodations that do exist, we see everyday that more needs to be done. Where we live in Washington, DC new playgrounds and schools are being built with budgets in the millions of dollars that do not meet even the minimum standards of the ADA. This makes it difficult for Claire to fully integrate into the community and the lives of her siblings.

Submitted by Claire's mom, Jamie