Steven J. Taylor

As a disability researcher and policy analyst, I have heard my share of compelling human stories over the years. But I do not recall ever being as moved as I was on the evening of June 9^th at a public forum sponsored by There’s No Place Like Home, a coalition of groups concerned with elderly persons and people with disabilities.

Where do I start? Speaker after speaker told a powerful story of human courage, hope, and need.

• A wife of a man with Alzheimer’s explained how her husband had to be placed in a nursing home at significant public expense because she was unable to obtain $200 a month worth of home support.
• A friend of a 14-year-old boy with severe disabilities described his life at a local nursing home, never seeing another child.
• A daughter told a heart-wrenching story of how her once vibrant mother suffered a broken leg and, in despair at not being able to obtain help at home, committed suicide.
• A 59-year-old social worker explained how his current placement at a nursing home does not permit him to fulfill his professional role, let alone afford a decent quality of life.
• A father of a 10-year-old living in a nursing home pleaded for our community to find a place where his daughter can be around other children.
• An Auburn woman who arranges for round-the-clock support for her mother and two aunts, all in their 80s and all with Alzheimer’s, described her care for the ladies, down to the preparation of ethnic foods.
• A career human services worker whose own mother was diagnosed with Alzheimer’s two years ago reminded everyone that the most powerful therapy one can receive is love at home.
• A 9-year-old talked about his grandmother who died at home last November: "You grow closer to people when you live with them."
• One parent after another--single Mom, committed father, a couple trying to deal with problems in life together--told of struggles with public and private agencies in obtaining adequate home care for their medically frail or disabled children.
• A woman with multiple sclerosis described her experiences with agencies that repeatedly sent her aides who were needy and had more problems than she did.
• A family support worker broke down in tears as she talked about an elderly mother and her adult disabled daughter who were both institutionalized when the "system" was unwilling to offer more than a few hours per week of help.

And so on, and so on.

Some of the speakers had harsh words for government programs and public officials. When you have your own troubles to begin with, you do not take kindly to bureaucratic run-arounds or unnecessary red tape.

• A woman with disabilities asked this question of public officials: if I’m good enough to serve on your advisory bodies, why don’t you listen to me when I tell you what I need?
• A local disability rights leader who grew up in New York institutions described the constant battle with public agencies to obtain adequate community services and swore that he would never go back to a nursing home.
• A Rabbi who has a physically frail son asked why those who care for dependent family members must continue to come to public meetings to plead their case and reminded us of our moral responsibilities to people in need. "And now, to hear words like `fiscal assessment’," stated the Rabbi, "and even the possibility of those who live in home environments to be removed from those environments to meet certain budgets is not only morally distasteful, but it is ethically shameful, vulgar and irresponsible."

Standing in stark contrast to the human stories told at the public forum are the hard facts of public spending priorities. Recent national figures indicate that, compared with citizens in other states, New York legislators and taxpayers are generous in spending for "long-term care for the elderly and disabled." We rank first among the states in public nursing home expenditures per capita--$289.54 for every man, woman, and child in New York State.

New York spends over $5 billion annually in public Medicaid funds alone for roughly 100,000 persons in nursing homes, an average per person cost exceeding $52,000 per year.

Behind the cold statistics are human beings—our friends, our family members, our neighbors, our fellow citizens, ourselves. Each has a personal story.

If we as citizens and taxpayers are willing to spend our tax dollars to place people in nursing homes, why can’t we make the same resources available to support people with disabilities and elderly persons at home?

"There’s no place like home is more than just a clever motto," said a soft-spoken Mom who has a 9-year-old adopted daughter with AIDS and whose 3-year-old son was diagnosed with a malignant brain tumor last year, "it is a call to arms."

Steven J. Taylor is Director of the Center on Human Policy at Syracuse University. His e-mail address is staylo01@mailbox.syr.edu