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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.


Dani Alexis said...

Thank you for this post.

I've been thinking for some time about this problem on a different level, especially since your 25-year-old could easily be me. I was relatively healthy until the age of 24, when a last-ditch attempt at "conservative" measures to manage my monthly bouts of chronic pain resulted in just enough pituitary failure to make me permanently partially disabled.

It's not quadriplegia by any means, but it has put me on a tightrope. With proper healthcare, I can function just enough to hold down a job that offers a high-priced, low-benefits health care plan that doesn't really offer the health care I need. Without any health care at all, though, I'd be unable to work (or play or keep my house clean or enjoy my family or anything else).

Not surprisingly, this has bothered me a great deal over the past five years. Under the current system, I'm "entitled" to sufficient health care to be a functioning member of society only if I work slightly harder than my health allows, risking burnout sooner rather than later. Once I burn out, I'm tossed.

With proper health care and social support, I could be functional and reasonably happy for the rest of my natural life, instead of struggling and living in constant anxiety. So could a LOT of people, including your 25-year-old. We have to start seeing people as people, not economic units.

william Peace said...

Dani, The difference between independence and dependence is razor thin and often dependent upon education, family support, and health insurance. I was prompted to write my most recent entry because I just bought a brand new Roho cushion. They cost hundreds of dollars, last about a year, and the one I got broke the day it arrived. Customer service at Roho is terrible and it has gotten to the point I now set aside money every month in anticipation for the day the cushion will break. I am lucky in that I can afford to do this but what about others that cannot? Our health care system is inherently flawed and the people hurt the most are the most vulnerable. Thus your point about about economic units is apt--I am not a paralyzed human to Roho I am a customer held hostage by the lack of any other seating choices. I am also sure some engineer has figured out a cost benefit analysis that maximizes profit with no consideration to the people that use the products manufactured.

FridaWrites said...

One of my friends has been affected by this problem and also by the Medicare/Medicaid gaps (can't qualify for home health care if husband has employment, can't afford living expenses and other healthcare expenses if he doesn't). Friends and family have donated a lot of money for per-hour nursing care. Avg. nursing home care per year=$70,000. A full time nursing assistant=$18,000 a year, and most people don't need full-time care. Even for someone requiring RN assistance through an agency, it's still cheaper. It also keeps families together. I don't understand why Republicans in particular are so opposed to ADAPT--saves money and family oriented. Really, there can be no logical objection to it.

I have advocated for MiCassa and Money Follows the Person Act (now renamed) for a number of years. While my state representative favors it and wrote a detailed letter back, the state senators do not and gave a boilerplate letter about the need to save money, missing the point.

FridaWrites said...

And yes, they should be making more than $18,000 a year. They could be paid twice that or more at still-significant savings since many people can get by with half-time help.

william Peace said...

Frida, Opposition to community based care is hard to understand. Many think conservatives are heavily influenced by nursing home lobbyists. I am sure this is true to an extent. I think the root cause is that people with a disability and the elderly are simply not wanted--they are not thought to be productive members of society. Given the devalued perception, they are not entitled to any special consideration, i.e. home or community care.

Elizabeth McClung said...

I am not in opposition to pretty much any act, organization or initiative which advocates for those with disabilities. Oddly, due to Rick Hansen, people with SCI's get free apartments, cars, job help and the rest, while anyone else is sort of left hanging (Wheels in motion got more from the BC premier last year than the government of Canada gave for people with disability for recreation and integration - and Wheels in Motion isn't a government organization) - but if it is that or a nursing home; I guess at least someone is escaping the pit. As a person whose case manager has tried multiple times to get me into a nursing home; I find it a ludicrious solution. The criminal aspect of our society is that while we supposedly are a meritocricy, the socity hypocritically, ADA, or other disability acts aside, only tend to look at the body for what a person can do. How DID Stephen Hawkings get a job instead of end up in an institution? Do people even check what degrees or skills a person might have before slotting them off for bed sores? No, indeed, dumbing oneself down is more likely to get a job than showing that you are far more qualified than your social worker (and how did they get this job anyway, and who the hell is reviewing them - since no one ever asks ME how they are doing in their job).

Thanks for the thought provoking post. Currently my grandmother is healthy, but in the hospital because there is no one to dress her. She was independant living. Now she needs, due to loss of memory, a more secure environment, so she is dumped in the one place where I have twice been told I would be admitted from ER except there are no beds; because she can walk with her walker, she can dress with minimum assistance but she doesn't know what year it is and never will (at age 93). So she waits for a nursing the hospital, along with many others.

I have been in a 'nursing respite' and I did not get rest or a meal the entire time I was there - there is good reason to fear a nursing home, particularly if you are young and female and the weekend workers, are single, male and can easily overpower you and it is thier 'job' to take off your clothes or panties.

Anonymous said...

Thank you for your thoughts, observations, words.

My 10 year old daughter has a different type of disability than your conjured young man.... she has cognitive and neurological issues as well as chronic complex care requirements. I dread the day I am not here to take care of her. The reality of our institution-based "care" system is deplorable.
i agree that it is all about valuing each person.

william Peace said...

Lyn, I understand your worries about your daughter. I hope you have an extended family as it seems that is how you can insure she will always be cared for in a loving home. No other group of people are as needlessly stigmatized as those with a cognitive disability.

Elizabeth, I am not as familiar with the cultural nuance of disability in Canada as I should be. I have heard of Rick Hansen and your comments remind me that some people joke that those with spinal cord injuries are the "chrome police". Many organizations exist that support SCI people and the press loves to highlight terrible stories that involve "overcoming" disability.

Your comments about the ADA highlight why the law has had such mixed results. To me, the law and society pays lip service to disability. When it comes down to spending money and providing essential services that is when the system breaks down. Those blue wheelchair symbols mean nothing as the reality of access is never easy. Like me, I bet you come across broken elevators and wheelchair lifts all the time. This highlights that people with a disability are assumed to be dependent and as you point out our abilities are never considered. What comes first and foremost is what we cannot do. I for one think walking is over rated!

Elizabeth McClung said...

William: I think this does show the difference between having a disability act and not; I live in the capital city and there IS no wheelchair elevator anywhere that I am aware of; there are however stairs into 7 out of 8 public resturants; most historic attractions, half or more of the local attractions. Even the British Columibia Museum, one of the top 10 rated Museum's in North America has two entire floors only accessible by stairs (out of five). And I don't have a problem with the blue parking spots as....there aren't any. There is no regulation for any so in a disability and senior rich area like James bay, the 150 parking spaces may hold up to 10-15 blue badges but there is only 1 spot, which is unusual, as often there is none, including ironically the hospital which has, out of 700 spaces, two for blue badges, which the last three times have been blocked by delivery trucks (since there is no Disability act in the city, province or country, there is no real ticketing or enforcement). I am not saying you are not correct; I am just pointing out that a generation of even a weak disability act makes people assume some things, like there will BE a disabled toilet, or parking spot, or elevator. However I completely agree when it comes to spending real money or providing genuine long term solutions for independance, both systems seem to suck.