Arizona Center for Disability Law

Arizona Center for Disability Law

TRACY HOEL

PRESS STATEMENT

My daughter Caitlin was diagnosed at 8 months old with a rare disorder called Aicardi Syndrome. She is now 14 years of age. Aicardi Syndrome is a rare X-linked syndrome that results in global delays, autistic behaviors, mental retardation, and a seizure disorder. As a result of her disabilities, Caitlin is unable to communicate and is unaware of the need to go to the bathroom. Incontinent briefs are a medical necessity for my daughter as she is incapable of controlling her bowel and bladder.

When we lived in St. Louis, Missouri, Caitlin was enrolled in the state=s Medicaid program. Missouri paid for incontinence briefs for Caitlin, finding such supplies medically necessary.

Our family moved to Mesa, Arizona in 2001. Caitlin qualified for and is receiving services under AHCCCS. She receives AHCCCS services through APIPA. Caitlin=s treating physician submitted a request for incontinence briefs to APIPA; however, APIPA denied our request stating that AHCCCS will not pay for incontinence supplies.

Our family must cover the expense of providing Caitlin with incontinence briefs. We spend approximately $120 per month or approximately $1,440 per year on incontinence supplies. This is a financial burden on my family. My husband is our sole source of income for our family of five. I am unable to work because I assist Caitlin with all of her daily living skills. We somehow fit Caitlin=s incontinence supplies into our budget. My family sacrifices every month to provide Caitlin with incontinence briefs so that she may live a full and happy life. With briefs, Caitlin is able to participate in social, community, therapeutic, and educational activities. Without briefs, Caitlin would not be able to leave the home.

Caitlin and I are plaintiffs in this lawsuit in the hopes that the court system will force AHCCCS to change their cruel policy and recognize that incontinence briefs are a medically necessary supply for eligible children with disabilities.

For more information on Aicardi Syndrome, please visit www.aicardisyndrome.org

To obtain additional information about Caitlin Hoel, visit www.aicardisyndrome.org, click on AMeet Some of Us@, scroll down the page and click on Caitlin Hoel.

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