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Tuesday, March 10, 2009

Idaho is a Dangerous Place to Live

I have posted about assisted suicide and its impact on the disability community. The link between disability and assisted suicide is a constant and ever present reminder that life with a disability is not valued. Of all the people I have met that have a disability those with cognitive issues are the most stigmatized. This is so wrong, so hurtful, so unnecessary that I am at a total loss as to how any caring human can tolerate such stigmatization. But stigma abounds for those with a cognitive deficit and I never cease to be appalled by the way people with cognitive disabilities are isolated from routine social interaction. One experience I had a few years ago highlighted this. I vividly recall going to a Hartford Wolfpack game in Hartford, CT. The Wolfpack are an American Hockey League Team affiliated with my beloved New York Rangers. I was at the game with my son and shortly after we arrived we saw a group of ten to fifteen cognitively disabled adults being escorted to their seats. This group of men and women were seated about ten to fifteen rows away from me. In spite of the fact the arena was crowded within a short period of time I was shocked to notice that this group was circled by rows of empty seats. This was the strangest seating configuration I had ever seen until it dawned on me that the people sitting next to the group people with a cognitively disability purposely left their seats. Why did people move from their seats? They did not want to sit next to a person with a cognitive disability. This bigoted behavior haunts me. I will never forget what took place. How can people be so closed minded? Would these people move if a black man sat next to them? Of course not, that would be bigotry. But these same people saw nothing wrong with moving when a person with a cognitive deficit sat next to them.

I thought of the above group of people with a cognitive disability when I read about an assisted suicide bill that passed in Idaho by a count of 34-0. The bill will allow medical treatment to be withheld from developmentally disabled people if their guardians or conservators consider continued medical care futile or inhumane. Read that last sentence very carefully. The Idaho bill, Senate Bill NO. 1114, would allow a guardian or conservator to withhold medical treatment. In essence, if a person with a "developmental disability" wants to live life support and life sustaining measures can be removed. And who gets to decide what "futile" and "inhumane" means? Doctors and ethics committees. This boggles my mind. Surely the men and women that wrote this law know a little bit of history. Did they ever hear of the T4 program in Nazi Germany? How about the Eugenics Movement in this country? What about Willowbrook Institution? Let me expand upon my reference to Willowbrook Institution. The deplorable conditions at Willowbrook Institution were gut wrenching and a national disgrace. Yet to me the worst part of the Willowbrook controversy was that doctors, social workers, school administrators, neighbors, priests, rabbis, and people too numerous to mention all convinced, forced, parents to institutionalize their children. Fast forward 30 years and the law makers in Idaho now want to give people in identical positions the power to decide whether a person with a developmental disability lives or dies? This thought kept me up last night and I shudder to think of the consequences this law can have on one group of needlessly stigmatized people.

Monday, March 9, 2009

Choices for People with a Disability

Imagine that you are a 25 year old man: you are single, college educated, and have just started your career. You have an active dating life and hang out with friends on the weekend. You rent a small apartment and have a roommate. An only child, your parents are good hard working class people that made ends meet but have limited savings and some health care issues. Imagine this young man on a hot summer day. He is showing off for his buddies and a girl he is interested in by jumping headfirst into a river from a higher than usual spot. Beer abounds, hot dogs are cooking and all are laughing and having a good time. Yet this man does not pop up to the surface and friends think he is goofing around. A minute or two passes before it is obvious something is very wrong. Friends spring into action, drag him from the water to safety, and a cell phone is used to call EMS. The fun and games come to a jarring halt. Later that day the news is not good: this young man broke his neck and is a quadriplegic.

The young man I have conjured is far from unusual and could in fact be considered an archetype for millions of others his age. The scenario I have outlined is not unusual either. Is what took place a tragedy? In some ways yes. No one, myself included, wants to be paralyzed. Paralysis is a unique life altering experience but the real tragedy is not one's experience with paralysis. Modern medicine does a good job at putting the human body back together after paralysis (I speak from experience). The real tragedy takes place in the days, weeeks, months, and years after one is paralyzed. Our culture is hostile to the presence of people with a disability and does not value our presence. I have thought about this for thirty years and remain puzzled. Why is so much money and effort put into critical care for paralyzed people at the onset of injury and by comparison virtually nothing in support services?

Let me return to my archetypical paralyzed young man. As a quadriplegic he can do most things by himself but certainly not all. He needs help getting dressed and transferring from bed to wheelchair, wheelchair to car and wheelchair to toilet. He cannot lift himself off his butt and as a result is at a very high risk for a pressure sore. He will need an electric wheelchair, sliding board, and other durable medical goods. Once medically stable, he receives the prescribed amount of rehabilitation. Ready to renew his life is when the real trouble begins. The apartment where he lives is totally inaccessible. His parents home is not accessible and they are too infirm to help care for their son. His job involves some labor that he can no longer physically accomplish. His boss informs him he cannot return to work. With no where to go what happens? Thanks to federal and state laws this young man's only viable option is a nursing home. Federal medicaid law considers nursing home care an entitlement. In home care or community based services are an option but subject to available state funding. The state where the young man lives has a waiting list for in home services of over 20,000 names. Off to the nursing home he goes. Within weeks the young man is back in the hospital with a pressure sore. The nursing home did not check his skin until he had a significant sore because they were short staffed. Depressed, the young man lashes out at those around him. His friends and parents stop visiting because he is verbally abusive. The hospital does not want him as a patient nor does the nursing home. Miserable and isolated doctors prescribe medication to stabilize his depression and mood swings. The staff at the hospital and nursing home use his prescriptions to chemically restrain the young man.

The young man I have described is in a classic Catch-22 situation. The odds are within a decade the man will die of a complication related to his paralysis. His death will not be a medical failure but rather a social failure. Simply put, his life was not valued. Sending a man in his 20s to a nursing home is a measure of last resort and study after study has demonstrated that people with a disability fear a nursing home more than a hospital. Nursing homes however remain an entitlement while in home care or community based care is not. Medicaid, the program that provides medical care for the poor and disabled, is overwhelmingly biased in favor of institutional acre. This makes no sense and it is why groups such as ADAPT have embraced the Community Choice Act. I wrote about the CCA on my blog last year and I have learned Vermont, my favorite state, is leading the way in an effort to give people with disabilities the kind of in home or community based care they want. The real kicker here, pun intended, is that community care is not only what people want but a significant saving when compared to nursing home care. What Vermont has done is impressive and important. Its program, Choices for Care, essentially negated the nursing home bias and insured only those with the highest level of need end up in a nursing home.

The mission statement of the Vermont Department of Disabilities, Aging and Independent Living is to make the state the best place "in which to grow old or to live with a disability--with dignity, respect, and independence". The core principles of Choices for Care are lofty:

The individual will be at the core of all plans and services.
Individuals, families, providers and staff are treated with respect.
The individual's personal and economic independence will be promoted.
Individuals will have options for services and supports.
Individuals will direct their own lives.
Living Well
The individual's services and supports will promote health and well-being.
Contributing to the Community
Individuals are able to work, volunteer, and participate in local communities.
Individual needs will guide our actions.
Effective and Efficient
Individuals' needs will be met in a timely and cost effective way.
Individuals will benefit from our partnerships with families, communities, providers, and other federal, state and local organizations.

The Choices for Care program has been in existence since 2005 and for the last four years Vermonters with a disability can control the direction of their life. Although not intended to save money, Vermont now serves more people and spends less. This is great but the real key here is choice: people with a disability and the elderly can choose where and how they live. Community based care saves lives and the young man I conjured is a perfect example. What would his life had been like if he was able to live in low income housing and have someone come to his home twice a day to help him dress, shower, and use the toilet? I doubt he would become depressed and need to be chemically restrained. I bet he could have found work on line or within the community he lived. He would not become socially isolated since he had no reason to lash out in frustration. In short, he would lead an ordinary post paralysis life. Sadly, there is significant opposition to community based care in most states and within the federal government. The transition from a system reliant on institutional care versus one based on community based care is difficult but can be done. Vermont is but one example. Community based care makes sense but only if society values the existence of people with a disability.