Monday, September 22, 2014

Society has moral duty to care for disabled, mentally ill


Potholes or people – that is the question.
In most of human history, those of us with severe physical disabilities or, in many cases, mental illness never lived much beyond infancy. However, with “modern medicine” and human services organizations those with disabilities are living into middle age and beyond because we are being treated humanely.
Some say this is a burden on society because some need caregivers, expensive medications and costly durable medical equipment.
But we are at a point where we, as a species, must decide if we are going to do what’s right – and that is being realistic and paying more of our income so that those of us with disabilities, who cannot work and need extensive medical care, get more than “three hots and a cot.” Life is far more than a place to sleep and enough food not to starve. It’s about having a chance to be, to have friends, to set and achieve goals or just to enjoy life. Other countries such as Sweden, Denmark, England, Norway, and Canada already follow this paradigm.
The fact that someone with a disability didn’t have to live in a state institution began in Michigan about 45 years ago. Organizations such as the Macomb-Oakland Regional Center and others found a way to use Medicaid funds and general funds to close all 12 state institutions where we, those with disabilities, had been housed for decades. Their courage helped move 13,000 people with disabilities out of the giant gray institutions into neighborhoods with community supports. Today, those institutions are closed and those with disabilities live in the neighborhood.
My own life was spared from such a fate when my father and mother told a doctor to get “blanked” when he said: “It would be better for everybody involved if Jerry was institutionalized.”
My dad took me, a 2-year-old, into the hall of the doctor’s office and said, “We’re going to raise you to be normal” and my dad Vincent and my mother Carol did. My sisters Nancy and Rene helped immensely after they were born a few years later.
Part of my father’s motivation “to save Jerry” may have been that this older brother Alex and sister Bernadette died in a state institution in Wayne County. My Uncle Alex had cerebral palsy, the same disability I was born with, and my Aunt Bernadette incurred a spinal cord injury in a fall down some basement steps. I saw Uncle Alex one time at Eloise, sitting in a chair in a gray shadowy room. I cried because it was evil. I never saw my aunt.
I and the many others I know that have disabilities who escaped the state institutions have contributed to the betterment of society in some way. The fact that we are in public in greater numbers now is helping to reduce the stigma I faced as a teenager when every time I went into a restaurant or movie show people would stare at me. Imagine now that people help me get my wheelchair out of the back of my SUV and talk to me as if I was “really normal.” Well, they know that I am.
We also have the Americans with Disabilities Act that I had a tiny hand in implementing since 1990 which guaranteed remedy if a person with a disability was discriminated in the work place, stores, in a state program, or unable to use the communication or public transit system. We’re not there yet in making the law reality, but we are slowly gaining access to jobs and more stores now are accessible to a wheelchair user like myself than are not accessible. We don’t have to sit in a house or room and just stare at the walls. We can go out into the sunshine like anyone else.
The state of Michigan has at least a $1 billion surplus from the current fiscal year. Many people say the excess should be used to fix the horrific potholes. I see their point, but I say let’s make sure that the agencies that care for those of us with disabilities don’t have to face financial cuts being implemented right now.
Some of the 10 Community Mental Health Authorities in the state are having funding shortages, putting at risk the providers who help give those with disabilities a home and safe environment. It’s a darn shame and morally inexcusable that the average caregiver in most places is paid an average of $9.06 an hour, but the budgets have no flexibility with many bordering on collapse if funds are cut further.
I say take a few percent of that surplus, give it to the CMHs that need it, raise the hourly rate of caregivers, allocate a certain percentage of the Lottery surplus or casino money or pass a new tax for those earning $340,000 or more a year so we can take care of those of us who were born or acquire a disability. The bottom line is that 8 million of the 10 million people in Michigan are just temporarily able bodied until illness, an accident or age transforms you into someone who can’t function “normally.” Michigan has about two million who already are living with disabilities.
If we make better use of available funds and “work it out,” you’ll know I am right. But why wait? Let’s help one another ASAP as we, all disabled children, did at the Leland Orthopedic School in kindergarten class when stronger children with disabilities helped those who had more extensive disabilities. We lifted each other up and the entire group survived and inspired even our teachers.
Society should be about helping one another make it. It’s called “Love thy neighbor as thyself,” a concept that’s 2,000 years old. Let’s quit gabbing and really do it.
Jerry Wolffe is the writer-in-residence and advocate-at-large of the Macomb-Oakland Regional Center. He can be reached at (586) 263-8950.