In this state, funding for respite has come to us in two forms: Caregiver Support hours and Medicaid Waiver Respite. Caregiver Support is a service that families receive when on the waiting list for the Medicaid Waiver program. (We were on the waiting list for 7 years. I'll explain Medicaid Waivers in a future post.) Currently, our state provides funding for 62 hours of Caregiver Support per year. It was 125 hours per year when we started, but recessions and budget cuts hit, as they did with so many programs everywhere. We received funding for Caregiver Support starting with T's preschool years, and continued right up until January of this year, when we were FINALLY targeted, approved and got our Waiver up and running. Now we have 10 hours a week of respite, a stunning amount to contemplate.
At first, during the early years, we would use respite time to simply browse a bookstore. To be out in the community and not be in a rush to finish all your errands before a meltdown occurred was just so glorious.
Whether Caregiver Support or Waiver respite, here's how it gets started: once we choose a company from whom we will receive services (and there are several), we are given a list of their employees who are available to take new clients. We chose one or two people and they come meet us and T, get to know him, and then they slowly but surely become part of our lives.
Our current respite provider, M, has been with us for at least 5 years now. We've seen her go from college student to graduate, and then on to employment at T's therapy clinic! Our previous providers have selfishly gone and gotten married, had children...you know, lived their lives. Honestly, don't they know one we love them they aren't allowed to do that? (Sarcasm, people!!!)
We've also been lucky to live in a city where one of the biggest therapy clinics sponsors a Parent Night Out program. Because it is a big enough city where we live, the location rotates around the city each week to 4 different locations. Register for your week, and from 6-10pm on Friday nights, your child with special needs is entertained, fed snacks, shown a movie, taken to a playground, all by trained staff people. And while all that fun is going on, the parents are doing WHATEVER THEY WANT.