"Our son John, is 22 years old and weighs 175 lbs. He uses a wheelchair and he cannot talk. John aged out of high school on October 20, 2014 with no viable transition plan. Now that school has ended, we are in dire need of funding to help with his care. John is on the short-term waiting list for a Medicaid waiver."
Rebecca and Bill
John requires maximal assistance with all of his care. He has to be toileted, fed, bathed and cannot be left alone due to sporadic grand mal seizures.
Georgianna, an 80 year old neighbor, helps out a few hours in the afternoons.
"In addition to John, we are caring for an 86-year-old mother who is in the late stages of Alzheimer's disease. We provide her meals, bathe her, wash her clothes, and take care of all her needs. We essentially do everything for two other people, in addition to working full-time."
One of the pleasures that John has is squirting water into the sunshine and watching the beads of water sparkle.
"John is on the waiting list for several day programs but we cannot move forward without funding. Some facilities do not accept self pay and are only funded through a Medicaid waiver. A day program would be far better for John than sitting in his wheelchair or lying on the floor all day long at home with no stimulation."
"We are both approaching our 60s. We've cared for John at home for 22 years and are committed to doing so for as long as we are physically able. A Medicaid waiver would give John the opportunity to thrive as best he can outside of the home and give us some much needed relief, especially as we age and cannot physically care for him. We're not asking for a waiver to make our life happier and more comfortable, just more bearable."
Rebecca and Bill