I am Don OBrien and I am here again with my wife Vivian and my son Mike. Last year we spoke to this group about our need to find an appropriate placement for Mike and I have to say we are still waiting. For those of you who do not know Mike I would like to introduce him. Mike has spastic quadriplegia as a result of a simple operation he had for a hernia at the age of three months. During the operation his heart stopped beating, depriving his brain of oxygen and causing brain damage. He is confined to his electric wheelchair from the time we get him up in the morning until we put him to bed at night. He needs help with all phases of personal care: showering, toileting, dressing, feeding and getting about the community.
Mike has lived with us at home for his entire 54 years. He has been very active and productive. He holds a general studies degree from NCCC. He worked as a data entry clerk at the Center for Assisted Technology at the University of Buffalo for ten years until that program was curtailed because of lack of funding. He is an avid sports fan and was inducted into the Kenmore East High School Athletic Hall of Fame as a special supporter. In 2002 he was inducted into the Western New York Baseball Hall of Fame in recognition of his commitment to sports.
He was a member of the Silver Wheels wheelchair football team for 15 years and plays softball in the Touching Bases League. He loves to bowl and uses a special ramp to do so. He is a staunch supporter of the Sabres and the Bandits. Like many others he misses his Sabres. In addition, he loves to travel. He has been to Europe a number of times and has traveled extensively throughout the United States and Canada.
Vivian and I are Mike’s caregivers and are not getting any younger. We are presently 80 and 78 years old. I have been receiving treatment for metastasized carcinoid cancer for almost five years. On September 1st of last year I had a liver resection to remove some troublesome tumors. Recently I have started a regimen of radiation and chemotherapy. As you might expect, as we get older and have more health complications, Vivian, Mike and I have become increasingly concerned for Mike’s future.
Mike has been waiting for an appropriate group home placement. His name has been on the Registry since 1992 and we are still waiting. He is among the over 1100 disabled citizens on that list. We recognize we are approaching the time when we will no longer be able to provide the personal care Mike requires. We need to find an appropriate group home placement and we need to find that placement soon. Our dream is to see Mike established in a secure and comfortable environment where his basic needs will be met and he will have the intellectual and social stimulation of friends. Most importantly, we want to be able to participate in that placement to facilitate his transition to a new living environment. Unfortunately, we are still waiting.
We are aware of the present fiscal problems all government and health care organizations are experiencing. We have been directly affected by the cutback in recreational programs, transportation, respite care and other services.
With the long-standing moratorium on developing new group homes, placement is based almost solely on crisis. An individual must be on the verge of homelessness to attain a placement. No reasonable and knowledgeable person would think that is an appropriate strategy to deal with the needs of our most vulnerable citizen. Actually, it is no strategy at all and so, we are still waiting.
As we approach the end of a long and full life, we are not afraid of dieing, but we are terrified an appropriate place for our son will not be found. It is made all the more terrifying by the realization there is no plan to improve the situation. And so, we are still waiting.
Over 1100 are waiting for appropriate placements in Western New York alone and the number is ten fold throughout the State.
We need your support to find the resources necessary to provide for these needs. But most of all, we need your support to insist the DDSO develops a comprehensive strategy to insure that the needs of our disabled citizens like our son and the many others represented here today are met.
Believe me you will have our overwhelming gratitude and support as you work to ameliorate this situation.
Thank you for you attention and your concern.