From Brita Darany von Regensburg, president of Friends of Autistic People – TheFAP
The threatened heavy rains last Friday did not deter parents of profoundly autistic children and Brita, president of Friends of Autistic People – TheFAP – to unite for an intimate working meeting with two of our local legislators, Senator Ryan Fazio and Rep. Hector Arzeno at the Café for Good.
Rep. Hector Arzeno, in front of him, Brita, president of Friends of AutisticPeople, John and Noreen McShane, State Sen. Ryan Fazio, Tibor Darany, Sr. V.P., TheFAP. Contributed photo
All parents of adult profoundly autistic children, they used the opportunity to work out the first steps toward a construct that would speed up the process of getting better paid, better qualified and more caring Direct Support Workers (DSW, often referred to as staff) in the group homes.
Most of our adult children with profound Autism and intellectual disabilities, who need 24/7 support, live or will eventually live in the group homes run by the State funded nonprofit care provider agencies such as Ability Beyond, Star, Marrakech, etc.
The DSWs work in shifts in these care provider group homes and are greatly underpaid. Thus there is a severe workforce shortage and staff are constantly rotating, not trained in Autism supports, and often do not have a caring disposition for their severely autistic charges most of whom are also nonverbal.
This, of course, affects the quality of life of our adult children with profound Autism, and it seriously worries the older parents.
Many parents say that they can never die while their children are alive.
In spite of all these worries the meeting was productive and ended on a positive note with everyone agreeing to do some research and meet again.