By Mike Lander on
My oldest son is a resident in a group home here on Long Island. Our family, including my son, have covered all the bases over many decades from various group homes run by different agencies, to out of state residences, to numerous psychiatrists, psychologists, neurologists, hospitalizations and medications. There is no magic pill. One of the most difficult days of my life was when we left my son in an out of state residential setting for individuals with his diagnosis and drove away while watching him in the rear view mirror. He was just a teenager at the time, and spent three years in that setting. He has a dual diagnosis and as such falls between the cracks, neither wholly an MR patient nor an MH patient, and so he is aware of his condition. It is a constant battle to lessen his anxieties, but we cannot give up. This brings us to a decision that many parents have trouble accepting.
At some point parents are no longer alive or able to take care of their disabled child. The waiting period for acceptance into a group home is many years at best. I have seen other parents with their disabled children in the community who, for perhaps cultural or religious reasons, refuse to have their child placed in a group home. These parents look 20 years older than they probably are from the strain of caring for their child. The reality of the situation is that many families cannot stand the strain and simply dissolve as a result of premature death, divorce or abandonment. This is the “lifeboat” scenario. Do you sink an entire family for the sake of one of its members? It’s not quite like “Sophie’s Choice” yet it remains an incredibly difficult moral dilemma.
In past decades the only choice for the child for an out of the home setting was an institution such as Pilgrim State Hospital (now known as Pilgrim Psychiatric Center), Kings Park or Willowbrook on Staten Island here in the New York metropolitan area. The horrors conducted at Willowbrook including experimentations have been well documented. The massive red brick buildings of Pilgrim State Hospital were a constant reminder of the mental health problem here on Long Island for many years. Some of those buildings have been demolished, but some remain to this day as if like a ghost town. Walking among them reminds us of the sadness contained within its walls.
This current period of the COVID19 pandemic has put a financial strain on all of us no less for the group homes which house our disabled children and spare their families. For society, the debate seems to be between opening up businesses or wearing masks to mitigate the virus and save lives. Funding for group homes have taken a serious hit. All of us have to bear some of the burden yet a funding cut falls heavily on those least able to defend themselves. The most vulnerable. You must realize the ripple effect of cutting back on funding for these group homes. Without them residents could be forced into shelters or into the street. Families who took back their children would be under tremendous stress. This cannot be allowed to take place. The mental health problem on Long Island is fundamental to the survival of more than just the disabled or their families. Cuts in funding would be felt throughout the economy in ways that most people cannot imagine least of all by those in charge of preparing a budget for New York State. This must not be allowed to happen.
“Pilgrim Psychiatric Center“; Brentwood,N. Y. (October 23, 2020)