Christopher, 23, from New York, has lived with intractable epilepsy since he was seven months old. During the day, he relies on a vagus nerve stimulator (VNS) and three medications to control his seizures. At night he needs constant observation from someone who can respond to his seizures and prevent the onset of SUDEP (Sudden Unexpected Death in Epilepsy).
For 18 years, Christopher’s mother Claudia was his primary caregiver. She says “I didn’t work for a long time, because Christopher was so unstable. I couldn’t sleep for eighteen years -- every time there was a sound [at night], I was jumping up.” While Christopher had private insurance through his father’s employer, the high co-pays and cost-sharing for his medical needs strained the family’s finances, and they faced foreclosure. Claudia said that the family had few options for financial relief. “We put our child’s needs first. We weren’t going to let [Christopher] go without medical care.”
At age 18, Christopher enrolled in Medicaid, which transformed his family’s life. He now receives professional home care seven days a week, and financial assistance with medication. With outside nursing, Claudia no longer needs to monitor Christopher’s nocturnal seizures, and she has been able to start working at the Epilepsy Foundation Long Island. Medicaid also pays for community habilitation aides, who help Christopher participate in his community and complete daily self-care tasks. These aides know how to respond to Christopher’s seizures, and keep him safe when Claudia and her husband are at work.
When Christopher ages out of his father’s insurance at 26, Medicaid will be his sole provider of health insurance. Claudia says that the program has been a lifeline for her family. “Medicaid has done a tremendous amount to lessen the burden -- it’s made a big positive impact on our family. Taking away Medicaid will put families in jeopardy.”