Our son, Mike, is 54 years old and has lived with my wife, Vivian, and me for his entire life.
That’s because Mike has spastic quadriplegia as the result of a simple hernia operation at 3 months of age during which his heart stopped beating, causing brain damage. Today, he uses 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.
Despite his disability, Mike has had an active and productive life. He earned a general studies degree from Niagara County Community College and worked at the University at Buffalo for 10 years until lack of funding closed the program in which he worked.
Mike played for the Silver Wheels wheelchair football team for 15 years, plays softball in the Touching Bases League and loves to bowl. He’s a huge fan of the Sabres and Bandits, and is a member of two area sports halls of fame in recognition of his spirit and perseverance. He loves to travel and has been to Europe many times, as well as toured throughout North America.
So what’s the rub?
I am 78 and Vivian is 80. I have been under treatment for cancer for almost five years. We are aging by the day and facing health complications and, as a result, we are deeply concerned about Mike’s future. We are approaching a time when we will no longer be able to care for him, and the only solution is placement in an appropriate group home.
Our dream is to see Mike established in a secure and comfortable environment where his basic needs will be met and he will be intellectually and socially stimulated. Most importantly, we want to be involved in that placement to facilitate his transition.
Mike has been waiting for a group-home placement since the mid 1990s. He is not alone on that list; there are 1,100 disabled citizens in Western New York on the waiting list, and statewide the number is 16,000.
With a moratorium on developing and staffing new group homes, placement is now based on crisis. An individual must be on the verge of homelessness to attain placement.
No one in his right mind would think this is an appropriate strategy to deal with the needs of our most vulnerable citizens. Actually, it is no strategy at all. Worse, there is no plan to improve the situation. And we continue to wait.
As we approach the end of a long and full life, my wife and I are not afraid of dying, but we are terrified that our son will not have been placed in an appropriate setting before we go.
This is a crisis throughout New York and it involves the most vulnerable people in our society. If government was ever intended to serve as a safety net, this is it.
Gov. Andrew Cuomo and state legislators, please act. New York spends $52 billion annually on Medicaid and it just doesn’t make sense that people like Mike and thousands of others like him who cannot advocate for themselves can be treated so callously.
This calls to mind an appropriate passage from the Bible: Whatever you do for the least of my brothers, you do unto me.