My son Neil is a 17-year-old young man with severe autism. He transitioned out of Parsons State Hospital this summer after being admitted in June 2011 for a medication wash. Neil was detoxed off a pharmaceutical that he had been on for many years to help him sleep and control his aggressive behaviors. The anti-psychotic drug was no longer effective, and we were in a crisis situation.
Neil was having episodes of intense, out-of-control rage, attacking me and his other caregivers. He was also very self-abusive and pulled out his own adult tooth, root and all, while biting the carpet in a rage.
We called a number of residential psychiatric facilities in the state looking for help. All of these facilities, with the exception of Parsons, said that because Neil requires round-the-clock, one-on-one care, they no longer had the manpower to take care of him. We were thankful that Parsons admitted Neil and successfully and safely detoxed him off the drug.
Our concern with the proposed KanCare program is that the private insurance companies will look at the cost first and not the person with a disability and the families who are in desperate need of help. Parsons is an underfunded facility, but without Parsons, many people with severe disabilities would have no place to go and would not be cared for. The staff members there have a very difficult job, but we found they do it with great care and compassion.
We worked very hard with our case manager and the Community Living Opportunities agency to transition Neil out of Parsons and back into his community. The CLO has a residential arrangement called an extended family teaching model home. Essentially, Neil lives in the EFT home and comes home with us on weekends. There have been a few bumps along the way, but the CLO, Neil’s EFT teacher and his family have been working hard to make it successful.
Without a good case manager, it would have been impossible to navigate the confusing developmentally disabled system. It is imperative that case managers remain conflict-free and work to put first the best interest of the person with developmental disabilities.