To live with our retarded children, our handicapped friends, our aging parents does place burdens on us. What we must learn from the nightmare of institutions is that these are burdens which cannot be avoided or delegated: to have a decent society we must behave as decent individuals. Ultimately our society will discover that it is actually easier to meet than to avoid the responsibilities we have as human beings.--Burton Blatt (1979)
You have a well-deserved reputation as a supporter of services for people with disabilities in this community. You and your representatives have spoken convincingly in favor of supported employment, family support services, and community living as an alternative to Syracuse Developmental Center. The County's Department of Mental Health has shown leadership in planning for community services.
I published an editorial in the Post-Standard on February 22 titled, System makes it hard to care for aging parent. This was followed on March 5 by a response from the Deputy Commissioner of the County Department of Long Term Care and a series of letters from persons who have had personal experiences with the long-term care system.
Even for someone who is knowledgeable about disability services, the long-term care system is perplexing, frustrating, and disappointing. Until you are in the situation of having to contemplate seeking public support, you cannot appreciate the extent to which the "system" encourages nursing home placement over help in your home.
The county representative refers to "inaccuracies" in my editorial. The editorial page of a newspaper is not the place to debate technical details. But I do want to comment on Enable's Consumer Directed Program, which was cited in the rebuttal to my editorial.
The Center on Human Policy evaluated this innovative program in 1996. Despite the limitations imposed by the long-term care system and identified in our evaluation, Enable's Consumer Directed Program is one of the most effective and responsive services in our community. The 98 participants in this program are fortunate. Yet people who are willing and able to arrange for their own services--as I was--should have the option of receiving funds directly. The math is simple: it is less expensive to provide funds to individuals and families than to reimburse agencies $5, $10, or more in administrative costs for each hour of aide services.
The points in my editorial were understated. I did not mention the county official in charge of Medicaid eligibility who refused to meet with me to assist in planning for my mother's future needs. I did not castigate Onondaga County for its refusal to participate in the state "cash and counseling" demonstration project that would enable funding for in-home supports to go directly to individuals and families. Nor did I wish to bore the public with a critique of the county's "task-based assessment" system that limits aide hours for mealtimes, using the bathroom, and others things that human beings need to do.
I stand by my comments of February 22.
The issues I raised cannot be dismissed as the agenda of a narrow interest group seeking to plunder the public treasury.
Some of us have disabilities or are family members of such persons. If we are fortunate, our parents and we will live to old age. Sooner or later, most of us will be in a personal situation of needing support for our family members or ourselves. "They--individuals and families who need help--are "we."
My editorial referred to problems with the "system"; I wrote, "It includes county long-term care officials who never question the fairness of state rules and, even worse, advise elected officials that reforms in the Medicaid program are unnecessary." The county's response defends the current system and suggests that the problem is that I do not have my facts straight.
When local representatives and community groups called for the closure of Syracuse Developmental Center in the late 1980s, state officials in Albany publicly stated that this was "unrealistic" and would not occur in the "foreseeable" future.
If there is a lesson to be learned from the closure of Syracuse Developmental Center, it is that people of good will can work together to change how services are provided in our community. Local state and county representatives did not defend the current system. They agreed that we could find a better way of using our tax dollars to support those in need.
Central New York rightfully can be proud of its national and international reputation as an innovator in the inclusion of children and adults with developmental disabilities in our schools and communities.
Why can't we aspire to being a leader in community and in-home supports for our aging and frail parents and spouses, our friends with severe disabilities, our children with complex needs. . .and the families who care for and about these persons?
Sincerely,Please contact the Center on Human Policy for copies of these letters.
Steven J. Taylor, Ph.D.
Professor and Director