Join Us (It's Free)

Keep Informed

Get SMS/text alerts

( )- -

Text alerts by Moms Rising. 4 messages/month. Msg & Data Rates May Apply. Text STOP to quit. For help text HELP or contact

en Español

My daughter with Cerebral Palsy

My daughter, Athena, also started life as a 28-week preemie. She also weighed 2-1/4 pounds at birth, and spent almost 3 months in the NICU after that. This was 20 years ago . . . and Medicaid-funded services have been supporting her in almost every phase of her life since then. Unfortunately, Athena did not come through her difficult birth unscathed. She has cerebral palsy, which affects her whole body. She is unable to stand or walk, or even sit without support. She uses a customized power wheelchair for mobility. She needs help with all daily living activities, including getting out of the bed in the morning. On the bright side, however -- Athena's speech is unimpaired and she is very smart. She's great with languages, in fact, and is currently a sophomore in college, majoring in French. But as I described it to someone recently, her life "runs on Medicaid." *So far* we have excellent services here in New York. Athena receives personal care services through "regular" Medicaid. She is also in the Home and Community Based Medicaid Waiver program, through which she receives additional support for college, in the form of a "Day Hab Without Walls" staff person. Medicaid helps to pay for her customized wheelchairs and other adaptive equipment. Medicaid helped to pay for years' worth of physical and occupational therapy. As long as the Federal funding is there, and New York State maintains its current commitment to community-based services funded by Medicaid, then Athena will have an excellent chance of living & working in the community and becoming a contributing member of society. But without Medicaid funding for community-based services, Athena would be at extremely high risk of ending up in a nursing home, which would be a tragic waste of a young, vibrant life.
story comments powered by Disqus