“A man should never be ashamed to own that he has been in the wrong, which is but saying in other words that he is wiser today than he was yesterday.” ― Alexander Pope
I had been invited to be the keynote speaker at a conference this past Friday being put on by the March of Dimes. The theme of the conference was “Opening Doors for Accessibility”. Having been a polio posterchild for the March of Dimes when I was five and having spend most of my life as an advocate for access I could hardly say no. As Friday arrived I was quite looking forward to the day due, in large part, because of a hell of a week.
I had spend 17 hours last week preparing documents for three different Alberta government departments to help them adjust my “coding” so they could establish where I fit in their “classification” systems. Three reports for three departments to prove I was actually a senior with a disability. Now this may sound a little picky but I get a little tired, after 65 years, of still having to “prove” I’m disabled. I hate that term “disabled” because it has become quite consuming. There’s a world of distance between a person with a disability and individuals with “special or complex” needs.
Unfortunately we have a health system that now relies on coding and classifications so they can group services. The individual has become redundant. It’s your classification or coding that counts, not your individualism. As an example you can take a look at the Alberta Health Services “Alberta Coding Access Targets for Surgery (ACATS)“. They work from a number and not an individual.
That was one report, not for surgery but for service. I live independently and like anyone who ages there are certain things that become more difficult with aging. There are some things, like light housekeeping, that are harder to do from a wheelchair. For example washing floors, it is impossible to not leave tire marks all over your floor after washing it. You can’t step over the wet spots. So it was suggested, and I did, apply for some light housekeeping through the “Better Off at Home” program (I say facetiously). Paying $120 a month for two visits gets costly when your income is fixed and there are certain costs (like rent) that you can’t avoid. Accessible basement suites are not that available so you pay the going rent for something that comes close to accessible.
It turns out, based on my “coding”, that to access two hours of light house keeping per month I need to be in receipt of homecare services. What are home care services you ask (I did)? Well the closest we could get to “home care” was having somebody come by every morning at 8AM to “help” me get out of bed and dressed. Things I do on my own but to qualify for that two hours of light housekeeping I also had to accept the morning care. Since these caregivers are not allowed to lift (part of the agreement) they would arrive every morning, stand there and watch me get out of bed, get dressed then get into my wheelchair. Not a lot of dignity in that scenario but dignity is not a quantifiable concept so it doesn’t enter into the equation.
Plus I had to have a keypad door handle lever installed so they could have a code to access my apartment in the morning to “help”. The timing of their arrival was arbitrary but set for roughly 8AM. Now I am often up by six AM working away on my computer so on numerous occasions I had a few aides show up and basically admonish me for not having waited for them, that it was their responsibility to help me get out of bed. I dealt with that quickly.
Now I know there are many people who need this assistance, I am not one of them. It bothered me not only ethically but fiscally as well that I was taking a service from someone else. Why should I be using 10 hours of tax dollars services every four weeks I didn’t need so I could qualify for the two hours of service I could use? Other people need it more but there are no codes for that. The concept of “individualized care” is just a term and, again, not quantifiable. However as a retired policy analyst I had a pretty good idea what they would be looking for but there were no codes for that. Sorry the sum of all of my parts are more than a set of numbers, service cancelled and back to my own thinning wallet.
That brought me to the next set of documentation, Alberta Seniors and Housing. They supply “low income” seniors with some rental assistance and for me that’s a whopping $72/month. I had already had a long discussion with one of their “service assistance” who was quite capable of reading the manual but didn’t seem to be strong on the critical-thinking side of things. She kept coming back to why I didn’t find a “affordable basement suite”. I kept repeating what part of wheelchair accessible do you not get. To live independently in a wheelchair brings additional costs. Plus I invested almost $8200 to have the bathroom in a condo I don’t own renovated to accommodate a wheelchair, don’t even get me started on the kitchen. Anyway I now have a five year fixed lease and don’t plan on moving anywhere in the near future.
Statistically about 30% of a disabled persons income living independently goes to disability related costs. Anyway the long and short of that was to submit a financial report (including my income tax return, something the province already gets) and they could determine if there were any other “codes or classifications” that may be applicable.
One of my personal conditions upon retiring was to ensure I was debt free, had no credit cards and nothing owning on my car. I have had the same vehicle for 13 years and it still runs like a dream. I don’t drive a lot, which is why I like the Beltline, everything is close so I use my car sparingly. Thirteen years and I have less than 95,000KM on my car. There is a sense of comfort with an added dignity it adds to my feeling of independence with my vehicle so I keep it. Last year required some major upkeep (new tires, brakes, etc) so I withdrew $4000 from my Lifetime Retirement Fund. Sadly that withdrawal put me $3000 over the Ministry’s poverty level and there are no reclassification codes that can change that so I now kiss that minimal rent subsidy goodbye until same time next year.
The third front was with Alberta Blue Cross for Seniors. I take about $300 a month in prescriptions. Some of that is pain meds. Polio, and other long term physically disabled individuals, will ravage ones body. We have body parts working overtime to make up for the inadequacy for others.
One of my main issues, and the reason I am now wheelchair dependent, is worn out shoulders. Shoulders were never meant to be a weight bearing joint but they didn’t understand the physics of that 40 years ago. Some of those things eventually wear out, shoulders being one of them. Mine started to deteriorated in the mid 80’s and by 1996 I was totally wheelchair dependent. You can only have so many rotator cuff repairs before that is no longer an option so they are now beyond repair. It becomes a vicious circle where not enough use and they become weaker, too much use and they tear even more leaving you weaker. I’ve been discovering recently it is even difficult to lift my good cast iron frying pan but it is nicely seasoned so I won’t give it up.
That also means you live with a lot of discomfort. I frame in my mind as discomfort because I believe that once you start calling it “pain” it takes over. I worked as a pain/stress therapist for almost three years at the Holy Cross Hospital so I have some actual therapeutic substance in that. So between meditation, balanced activities and drugs I maintain a level of quality I can live with.
For the last ten years I have managed my discomfort with a slow release long acting codeine. Moving back to Calgary and going on the Alberta Blue Cross Medical plan for Seniors helped cut the monthly prescription costs by about $250. However they would not cover the cost of the the Codeine Contin using opioid crisis as the reason. They didn’t want to run the risk of “feeding an addiction” but, if I were agreeable, they would fund a different drug called Hydromorphone, an even heavier narcotic. Now what I am doing has worked for ten years so I declined and would pay the price myself but not first without appealing it. So, again, I had to put all of my paperwork together, present my argument to Blue Cross, won my case and they now fund the prescription as long as my doctor issues an annual “letter of dispensation”.
When given the options of “possibility” being an addict or a functional human being living with some dignity, I will go with the dignity every time. I get tired of this medical argument over addiction versus quality. It is a very weak argument but again my coverage “coding” doesn’t allow for individual needs. Coding and labels win every time until you interject yourself into it and become a person to them. This means contact. Once you are across the desk from them you are real, not just a codified file system.
So my point of all of this rambling is that despite the polio the real disability is the system and the hard work one has to put into it to be independent. This brings me back to where I started, the conference. I am very lucky in having the where with all to be my own advocate. We group all kinds of disorders under one “disability” umbrella and code rom there. This type of statement doesn’t make me popular with other members of the community living with some type of condition but there is a wide chasm between being disabled and having special needs. As I scanned those consumers in attendance at the conference I realized so many of them had no idea what was available to them.
They are a commodity or product for the health industry. They are job creators for community support workers and government funded agencies. I had attended that conference hoping to expand the concept of community partnering with the business sectors of the city. I don’t think I did that. As I was speaking I was reviewing in my mind (I’m a hardcore Gemini and need to be mentally multitasking) all of the detail I had tackled over the four days leading up to Friday. A voice in the back of my mind was questioning how many of the consumers at this conference would be able to be their own advocate. The answer was very limiting. You can’t fight for something if you don’t know it exists. There is very little incentive to be truly independent unless you know the codes or classifications.
Ending on a high note I did secure a short term contract on Saturday afternoon that will at least cover my housekeeping costs for the next six months. Life is based on one step at a time, independence is based on knowledge of what is. Tiger Woods taught us that today. He faced his adversity and as Alexander Pope’s quote above said, Tiger came away a wiser person for it by capturing his first Masters since 2005. My preference is knowledge but I also accept how it can alienate you from those that take so much for granted.
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A Poster Child's Perspective 