Edward
Good morning. I am Susan Williams. A parent and parent advocate. I have spoken at our Manhattan Legislative Breakfasts a few times. The first was over 20 years ago. At those events, there was always someone there who isn’t here today. That is my dear late husband, Sam, whom many of you knew. He was always here, always in the background, ready to forcefully step forward if our son, Edward, needed his intelligent and firm voice to get our issues or problems solved. That changed in late June of 2010. Things have not been the same since for me or for Edward.
Edward is now almost 27 years old. He walks, but he does not talk. He has never spoken a word. He is autistic, intellectually impaired, and has a seizure disorder that we can’t quite get under control. He also has self-injurious behaviors, which have caused blindness in his left eye. He caused a severely detached retina in his right eye and is still under his brilliant surgeon’s care, recovering from that major surgery. All of us involved in his life are concerned that he will blind himself in his only seeing eye. He has serious gastrointestinal problems, and is working with two GIs to try to get them solved.
Edward lives in a residence with five other young men, all the same age, all non-verbal, and all with unique behavior problems. He doesn’t understand why his father is not around. They had an extraordinarily close relationship. I have put photographs of the two of them together on one of the walls in his room. In the country looking at llamas. At the beach which he loves. In our apartment at Christmastime. One of the saddest things right now is that I cannot manage Edward alone. It takes three to tango with Edward. That means he cannot come home for Thanksgiving or Christmas or Easter. I cannot even take him out to lunch alone, as he starts hitting himself while we’re in the car. A staff person must come with us. I can’t drive and do behavioral interventions at the same time.
When Edward moved into this residence from his residential school he had one-on-one care. That care has escalated to one-on-one care, arms-length, 24/7 because of his behaviors and because of his eye surgery. Recently he has started screaming and crying inconsolably. None of the soothing techniques we used in the past are working. I think this heartbreaking behavior is because of the loss of his father. He is also still hitting himself. He carries a protective helmet with him wherever he goes—in his residence, on the van to his day program, and at the day program. He is on three seizure medications, and three medications to help control his behavior. We still haven’t gotten there. And because he cannot talk, the issue is even more clouded than it would be for others.
Edward goes to a day program which he very much enjoys. He swims, volunteers at Meals on Wheels, works on art projects, loves music, goes on outings, and more. I feel lucky that he has these very much needed, intense, high levels of one-on-one care in both his residential and day programs, which he must have to be healthy and safe. Where would we be without them? The photograph you see here of a very happy Edward is with a wonderful therapy dog named Jam. (It has taken me years to get this program going at the residence.) Her weekly visits are helping to calm Edward and make him happy. A great computer teacher is also working with him, his residential staff, and staff at his day program, introducing applications on an iPad2 which we hope will help him be able to communicate.
Thank heavens Edward already has a residence. Here in New York State, because of the fiscal situation, very few residences have been developed over the past several years, despite an enormous need. There are 6,800 people in need of residential placement. In Manhattan alone there are 521 individuals on the waiting list, with 41 of those in urgent need of placement, such as those living with aging parents.
There is money in the Executive Budget for OPWDD for residential development, but the low- cost, less than 24-hour options that the State is idealistically hoping will serve the waiting list are simply not going to work for everyone. In fact, a very significant percentage of the waiting list population cannot possibly live without 24-hour staffing. For these people, the state is relying on vacancies in existing residences, but for many the available beds in existing residences are not going to work either. Like Edward, many of the people needing 24-hour care could not live safely in existing vacancies—people who have behavior problems and need an intense level of care, people who have mobility issues and must be in an accessible environment, people who need a great deal of staff assistance to help them through all aspects of their days. Individuals with developmental disabilities are living longer. As the parent and child age, the needed level of care escalates. Some people develop dementia, which creates a need for another level of care.
I am lucky to have Edward where he is now. In this present climate, it would be almost impossible to find a residence for him. OPWDD must recognize that the need for what they are calling “enhanced services” must be met. Here in Manhattan, and throughout the State. OPWDD needs to continue to provide a high level of care in both residential and day programs, and must recognize that many individuals require it.
Say a prayer for Edward and for me.
Thank you.