Our son, Jeff, was born almost 48 years ago. The open spot on his spine was more serious than it looked. The nerves to his legs, bladder and bowels were affected.
Doctors told us that our beautiful little boy would not only be incontinent, but would never walk, talk, ride a bicycle and would likely be retarded.
Bravely, or stupidly, we felt we could handle that. When people told us to put him in a “home,” we said we had. Ours.
State “schools” and institutions were almost the only services available. We couldn’t even obtain respite for family emergencies. In his 20s, Jeff entered a group home and we stayed heavily involved, including lots of hands-on care. Unfortunately we learned that the system lacked enough safeguards and could be downright dangerous.
Over the past few years, area readers have read of one young man drowning in a bathtub, then 13-year-old Jonathan Carey dying while being restrained in a van wherein his “caregivers” were apparently out doing errands for themselves, and recently of four people perishing horribly in a fire at a state home in Wells.
Since Jonathan’s death, his father, Michael Carey, has taken the role of watchdog, lobbying for measures he believes will assure safety. But in his recent letter to the editor (Gazette May 19) he’s barking up the wrong tree when he calls for resignations of the commissioner of the Office of Mental Retardation and Developmental Disabilities and others at the regional level, the Capital District Developmental Disabilities Service Office (DDSO).
Quick to blame
The general public is quick to blame “the state,” perhaps because it is charged with seeing that agencies are in compliance with regulations and is the conduit to agencies for funds.
In actuality, the service system for people with disabilities is a partnership of services. Families provide the lion’s share of services. Other services are provided by the state directly, or by voluntary agencies, not-for-profits or private agencies. At least one of the mentioned tragedies occurred at a private agency.
I understand only too well that it is difficult to get safeguards into accepted practice. Years ago, I gave up my entire vacation to help rewrite regulations for community residences. I found myself the lone voice arguing for criminal background checks for direct care workers. What could be more sensible?
But another parent, a CEO of an agency, argued against the checks. Workers were hard enough to get, it would cost money, and background checks would leave them open to legal repercussions and deprive her private agency of their right to choose new hires.
Change is not easy.
Although capable leaders are important, they can’t keep tragedies from h appening no matter how many regulations and safeguards we have. They can, and do, listen. OMRDD has many hearings open to the public and many committees working diligently to improve services. Commissioner Diana Jones Ritter is smart and caring. She knows the system well and is actively promoting agency transformation.
Give family control
OMRDD has for some time been looking at ways to have “the money follow the person” so that individuals and their families have more control over their services. In many cases, these services could help integrate labeled individuals into a community and might cost less. But officials warn that such change might “destabilize the current providers.” Buildings might be closed. Jobs and benefits may be lost. People might be lost in the shuffle. Thus there is pressure from traditional providers and unions not to rush change.
Cultural traditions and stigmas are also at work. When a child has severe medical or behavioral problems, the parent(s) have a difficult time being gainfully employed, let alone pursuing a career. In some instances it makes sense to pay families stipends for good care or to cover them with free health insurance to compensate their greater loss of income. Yet people have told me, “That would be like paying someone for having a retarded child.”
The system is too tied to bricks and mortar. It has been almost impossible to move away from congregate living or even “sheltered” workshops and do-nothing day programs. Families need and deserve significant supports. Often the most difficult situations get the least help because agencies are not set up to provide flexible, at-hand supports. It seems more “system friendly” to place people, even children at times, into agency-run and taxpayer-supported residences than to provide money to family, friends or neighbors even when it would be sensible and cost-effective.
Some of the barriers are bureaucratic: funding mechanisms and regulations. Because our son has so many medical needs and autistic-like behaviors, he is in some ways a bellwether for how the system is doing. He was not doing well in his former setting and when the state came up with a new approach, we were overjoyed.
More than 10 years ago, we instituted “person centered planning” for Jeff, wherein two of the most innovative service provider professionals, Chris Liuzzo and Pat Fratangelo, helped us design the kind of setting where he would thrive. The plan was submitted, modified, sent back and forth to various committees and budget offices. The house hunt was joined by agencies and Realtors, and we ourselves ran the highways and byways day and evening for over two years. Finally it was decided that we needed new construction. More meetings, committees, modifications. Then the state Dormitory Authority had to approve. The construction had to be union-approved. The budget people cried, “Too expensive.” Years of hopes and work went down the drain.
In 2003, Jeff was admitted to St. Peter’s in toxic shock. He remained hospitalized for three months, with us visiting and staying near every day to encourage him. When the hospital wanted to release him, they told us it would be to a nursing home, the first one available, perhaps a hundred miles from us.
David Slingerland, director of the Capital District DDSO, came to the hospital to facilitate better options. Jeff’s doctor, Robert Paeglow offered to do house visits. We said we would help with his care every day. Finally, the not-for-profit agency agreed to take Jeff back. Overall, however, the system is still too underdeveloped to make a firm lifetime commitment to people who it has previously served.
Challenges of system
Even the congregate living model has its challenges. Workers are not well paid and have few benefits. They may be pressured — if not by managers, then by their own concern for consumers — to work overtime and to fill in where they are unfamiliar with consumers. Both pose more risks. Often the “culture” in certain programs inhibits the best instincts of workers.
Perhaps the most significant challenge in our system is to forge one-on-one friendships for our loved ones. Jeff has been safe and happy for nearly three years now. His happiness and well being seem to come more from the attitudes and sincere interest of the people who believe he is valuable and capable of growing than it does from regulations. The real safeguards are at the person-to-person level.
Betty Pieper lives in Scotia .The Gazette encourages readers to submit material on local issues for the Sunday Opinion section.
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