Nothing is ever straight forward in the world of disability but when those programs reportedly there to make life easier for a person with a disability don’t you can get upset quite easily. Why do things in the disability world have to be so complicated all of the time? My answer: we are a good product and provide jobs for millions of people. People from care givers to support services and bureaucrats. You talk to many of them and we represent employment. The employment I hate creating is for some bureaucrat who likes to spend their day creating policy barriers.
I mentioned in one of my recent posts that I am currently debating my need for a new wheelchair with the provincial body that supplies that service. Debating is a very polite way of framing it but I am trying to be open minded about this. The debate is very focused on what should matter; client need or service provider’s policy? According to their website “The Alberta Aids to Daily Living (AADL) program helps Albertans with a long-term disability, chronic illness or terminal illness to maintain their independence at home, in lodges or group homes by providing financial assistance to buy medical equipment and supplies”. Sounds pretty straight forward one would think.
My current chair has certainly seen better days. However since breaking my hip in the fall of 2011 I just don’t sit the way I use to. So not only am I not comfortable but my chair has developed so many squeaks and groans that I have lost trust in its structural reliability. And when you don’t have that trust in your only means of mobility it starts to have an impact on ones physical well being. Not having that trust affects how far from home I am prepared to wheel and lately that hasn’t been far. That means less exercise and all the pleasantries that go along with lack of exercise.
Fully realizing this was happening I began the process last August to make application to the Alberta Aids to Daily Living (AADL) program for a new wheelchair. I know how bureaucratic any government program can be and having dealt with AADL before I knew it would take a while. On August 7, 2012 I got onto the Yellow Brick Road of government bureaucracy to begin the wonderful adventure of obtaining a new wheelchair. Now I may be sounding a little facetious but I have had to substantiate my disability for over fifty years and I cannot get the powers that be to understand the results of my polio are never going to go away.
The best example of this is these disabled parking placards that everybody seems to assume gets you the best parking spots. They are a nice thing to have but every five years I have to go back to my doctor (valuable medical time that could probably be used in a more productive way), get a CURRENT letter from him verifying my disability (at a cost to me of $50, his office considers it a non-medical form) and then take it to the government office where I can renew my parking placard. The fact that I roll into their office in my wheelchair, have a drivers licence with a hand control restriction and survived polio when I was three years old is not enough proof that I actually meet the criteria for said pass. This same process is involved in proving my need for a new wheelchair.
I do need to add a qualifier here to put this need into perspective; the new wheelchair has to meet my specific needs which is an important differential. This is a piece of equipment I will be sitting in 24/7 for at least the next five years. If you could only have one pair of shoes that have to last you for the next five years are you hanging out at the sales table? I think not. I require a wheelchair that meets my body needs as close to perfectly as possible, not some chair that was on the sales floor and is “close” to what I may need.
I should point out here that by the time the chair is basically build to the specifications supplied by the authorizing Occupational Therapist we are looking at about $7000. You can’t convince me that they COST that much to make but that’s how much they cost to purchase. Now here’s where the ink gets redder, my needs fall under a category D chair and “Category D” has its own rules. But to keep it simple under category D the program will cover $3500 of the cost and I cover the rest. As well, under Category D, I retain ownership of the chair.
Now here’s something many of you may not know. If AADL purchases or assists with the purchase THEY, not you, are the owners of that equipment. I only mention that so you can recognize the irony of a program supposedly there to help build independent living can actually trap you in the province. You can’t move out of the province without returning the equipment, as in a wheelchair, to AADL. I have never seen a situation where you need a mobility aid in one province but can be very ambulatory in another. I can personally attest to this as I have lived in five provinces and have experienced the same mobility issues in each province. With a Category D I can go where ever I like and keep my equipment.
Close to the end of September the OT came to my apartment to do a complete assessment. She wanted to see what kind of environment the chair would be being used in. She measured my doorway widths, watched how I transferred in and out of my chair as well which situations I would use various transfer techniques in. Transferring into my recliner is a different process than transferring into my car as an example. Anyway the OT did everything she needed to, using all of the skills and education she had acquired as a professional occupational therapist. Based on her level of knowledge she made the determination that I did need a new chair for safety and health reasons.
Now I was quite pleased as it can often take three months or more to see someone for this type of assessment. So having somebody see me in less than eight weeks was a bonus and she did a very good job.
Turns out her assessment meant nothing. Due to their own policy Class D chairs can only be purchased every seven years (mine is just coming up to six years old), AADL turned me down. Stay tuned!