The Disabled Can Work?
Monday, February 11, 2013
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We talk about the cost of welfare and yet where are the incentives to find work and where is the choice to get hired?
I am on ODSP and I've been chasing that elusive job since 1978; first as a person with a diagnosed mental illness and later as a person who uses a wheelchair. The physical disability was caused by being prescribed too many psychotropic medications for, what later turned out to be a non-existent mental illness, for too long.
In this Blog I’ll share my story with the goal in mind of better illustrating some of the barriers are so, over time it can be fixed.
As a person with a mental illness I was slowed down by medication so I most definitely was not employable. I was also limited by the need to attend outpatient programs. These two things didn’t stop me from trying to get a job though. The thing is, despite trying super hard to become employed, all I was able to get was the odd contract job, one or two job placements, a few summer jobs, and that's about it. None of these jobs lasted for more than a few months because I was too unwell and too sedated, to work. I had a hard time keeping the pace so the employers kept letting me go. It wasn't until 1995 that I finally got my first more sustainable part-time job in a convenience store.
The barriers to employment include, to this day, a lack of a post-secondary education, once looking overly medicated (because I was), having no work history and having no networks of people who could provide a good job reference. When I did job placements I was informed that the job performance reports could not be shared with prospective mainstream employers because it would be a violation of my privacy. The same answer was given about sharing the results of the work capacity and other types of job readiness testing with a prospective employer. My question is, well how else are they going to know if I can do the job or not?
When I got the job in the convenience store I was lucky. The boss was a former nurse and, in the interview, she asked all the “wrong” questions. I had no idea how not to answer her questions, so I answered every single one of them even though some of the questions were very personal and it made me feel very uncomfortable. The gamble of answering her questions worked because she hired me. She later told me I was hired because she could tell I was honest and forthright with my answers and it was clear I was not trying to hide anything.
While working I had increased difficulties walking due to the long-term neurological side-effects of the prescribed medications. At that point I was on about 10 different types of prescribed medications so, in hindsight, I consider it a miracle that I was even able to function at all. I also had weird nerve ending sensations, something like a hair on my face, and I kept trying to brush it off. To outsiders, I was informed that the effort to try to brush the non-existent hair away, made me look like I was acting really unusual. Nevertheless this ex-nurse who became my employer was compassionate. She ignored the unusual movements and weird walking gait, and she allowed me to sit down during the quiet periods. She told me she didn’t want to lose me as an employee because I was reliable, efficient, and did everything that she asked me to do. By late August 1995 I was having so many problems with falling that the doctors admitted me to hospital. There, they told me I had to start using a wheelchair. Because the housing and the workplace were not wheelchair accessible, I was left with no choice but to move out of the supportive housing environment of Friendship Homes and into a full priced apartment in the community. I also had to give up the job.
The supportive housing where I’d been living up until then was not wheelchair accessible so I was told I had to move out. I didn’t know about human rights and the fact they were breaking the law back then, because the staff and doctor were both supportive the decision being made by the housing provider. They agreed to keep me in hospital for an extra 6 months to accommodate and then they went looking for a full-priced wheelchair accessible apartment. When they found one, they told me I must move into it even though I couldn’t afford it and I’d never lived alone. I was given zero support to help manage the new barriers related to the wheelchair, but I was able to continue the mental health support. Their role was to tell me to take on more and more, even if it was impossible to do from a wheelchair. It was very stressful and it became almost impossible to overcome the barriers. Thank God I got that good family doctor who got me off the medication so my brain could wake up and I could become more functional again. When I moved into that full priced apartment, that’s when the financial hardship REALLY hit.
The only choice I had was to move into a place that cost $614 in rent per month. My monthly income from Family Benefits (FBA), the precursor to ODSP, was $930. On FBA there was no coverage for medical supplies. This meant that I was responsible for paying 25% of the cost to purchase a new wheelchair. The Assistive Devices Program (ADP) paid the rest. Applications were made to 15 Service clubs and agencies such as Rotary, Lion's Club, Oddfellows, the Legions, March of Dimes among others, and their answers were always the same. It was toward the end of their fiscal year and they had no money left. I was left with no choice but to sign an agreement with the medical supplier saying I’d pay them $100 per month.
Needless to say, I couldn't do it. The only way I survived was by striking it lucky. I applied for a credit card and was approved. I guess, if one were to listen to the media and government announcements of today, one could say I was one of those "irresponsible ones" because I used the credit card to buy groceries in the only grocery store that would accept it, A & P. Considering the fact I paid the debt back in full several years later when I got a job, I would declare that it was not irresponsible, it was a necessary top-up to the government pension that enabled me to be well enough to look for work. I also used the credit card to buy medical supplies until the ODSP program was created and those expenses were finally covered.
I was desperate and hungry so I did exactly what society says will happen when one reaches that stage. I went into overdrive looking for work. I enrolled in the Job Club (a program with the March of Dimes) and I started to apply for 5 jobs a day. I had a chart showing who I applied to and the date, and then every week I would do the follow up calls. I'd do this weekly for 2 months, then monthly for 6 months, and then finally give up on that employer and look elsewhere. I wrote resumes and cover letters for every single one of them. The cover letters were personally addressed because I took the time to look up their name. To Whom it May Concern, Dear Sir, or whatever, was a format I would not accept. In the job club the feedback was always to say how inspirational I was to other members. I was congratulated on my method of job search and others in the club started to adopt my style. At the end of the program the facilitator told me that I’d put way more effort into this than anyone else did so, if anyone's going to get a job, I would. In the end I was the only one who didn’t get a job.
The reasons were, I use a wheelchair and I couldn't get in the door of most places, navigate through small spaces inside or use the washroom in the old historical buildings, because typically they were installed in the basement. The other big barrier was the limits associated with using pre-booked, and hard-to-get, specialized transit.
When the ODSP program was created followed by the Employment Supports Program, I was right in there signing up. Major and expensive testing was done. These included capacity assessments, career exploration, psychological testing, etc.
Here is a chronology of the timeline:
I then set out to get a job on my own.
I've been unemployed ever since. I've asked to start a new file with employment supports but they have informed me that the employment supports counsellor who told my employer I was over-reacting to the limits I was experiencing with the barriers and number of tasks I had to manage on my own after work, was the only person I could get. I won't take her back. When she told my employer they could stop accommodating the time of my shift so I could get the Access Bus to everything I needed to get to, and then went to employment supports to close my file after I wrote her a letter to educate and better describe the impact of the barriers, needless to say I told ODSP Employment Supports I'm not interested. I then asked them to look for another job developer. Thus far, they have not informed me that they found one so, needless to say it's morale busting.
Every once in awhile I try to apply for jobs on my own, but the trend these days is to not accommodate the shift for someone who uses a wheelchair so they can get to work using the specialized transit system.
For all these reasons, I can only shake my head in wonder and ask, what are people (the government, the media, and the public) thinking when they publicly declare that all people with disabilities can go to work, may have to go onto the welfare system, and may even have to sign participation agreements?
If I wasn't high energy and more motivated than some (a trait that used to be diagnosed as manic), I could never have accomplished this much.
How on earth do they expect people with disabilities to endure all these gaps so they can become employed?
Please Read my other Blogs:
Transportation: http://wheelchairdemon-transit.blogspot.com
Health Care: http://wheelchairdemon-health.blogspot.com
I am on ODSP and I've been chasing that elusive job since 1978; first as a person with a diagnosed mental illness and later as a person who uses a wheelchair. The physical disability was caused by being prescribed too many psychotropic medications for, what later turned out to be a non-existent mental illness, for too long.
In this Blog I’ll share my story with the goal in mind of better illustrating some of the barriers are so, over time it can be fixed.
As a person with a mental illness I was slowed down by medication so I most definitely was not employable. I was also limited by the need to attend outpatient programs. These two things didn’t stop me from trying to get a job though. The thing is, despite trying super hard to become employed, all I was able to get was the odd contract job, one or two job placements, a few summer jobs, and that's about it. None of these jobs lasted for more than a few months because I was too unwell and too sedated, to work. I had a hard time keeping the pace so the employers kept letting me go. It wasn't until 1995 that I finally got my first more sustainable part-time job in a convenience store.
The barriers to employment include, to this day, a lack of a post-secondary education, once looking overly medicated (because I was), having no work history and having no networks of people who could provide a good job reference. When I did job placements I was informed that the job performance reports could not be shared with prospective mainstream employers because it would be a violation of my privacy. The same answer was given about sharing the results of the work capacity and other types of job readiness testing with a prospective employer. My question is, well how else are they going to know if I can do the job or not?
When I got the job in the convenience store I was lucky. The boss was a former nurse and, in the interview, she asked all the “wrong” questions. I had no idea how not to answer her questions, so I answered every single one of them even though some of the questions were very personal and it made me feel very uncomfortable. The gamble of answering her questions worked because she hired me. She later told me I was hired because she could tell I was honest and forthright with my answers and it was clear I was not trying to hide anything.
While working I had increased difficulties walking due to the long-term neurological side-effects of the prescribed medications. At that point I was on about 10 different types of prescribed medications so, in hindsight, I consider it a miracle that I was even able to function at all. I also had weird nerve ending sensations, something like a hair on my face, and I kept trying to brush it off. To outsiders, I was informed that the effort to try to brush the non-existent hair away, made me look like I was acting really unusual. Nevertheless this ex-nurse who became my employer was compassionate. She ignored the unusual movements and weird walking gait, and she allowed me to sit down during the quiet periods. She told me she didn’t want to lose me as an employee because I was reliable, efficient, and did everything that she asked me to do. By late August 1995 I was having so many problems with falling that the doctors admitted me to hospital. There, they told me I had to start using a wheelchair. Because the housing and the workplace were not wheelchair accessible, I was left with no choice but to move out of the supportive housing environment of Friendship Homes and into a full priced apartment in the community. I also had to give up the job.
The supportive housing where I’d been living up until then was not wheelchair accessible so I was told I had to move out. I didn’t know about human rights and the fact they were breaking the law back then, because the staff and doctor were both supportive the decision being made by the housing provider. They agreed to keep me in hospital for an extra 6 months to accommodate and then they went looking for a full-priced wheelchair accessible apartment. When they found one, they told me I must move into it even though I couldn’t afford it and I’d never lived alone. I was given zero support to help manage the new barriers related to the wheelchair, but I was able to continue the mental health support. Their role was to tell me to take on more and more, even if it was impossible to do from a wheelchair. It was very stressful and it became almost impossible to overcome the barriers. Thank God I got that good family doctor who got me off the medication so my brain could wake up and I could become more functional again. When I moved into that full priced apartment, that’s when the financial hardship REALLY hit.
The only choice I had was to move into a place that cost $614 in rent per month. My monthly income from Family Benefits (FBA), the precursor to ODSP, was $930. On FBA there was no coverage for medical supplies. This meant that I was responsible for paying 25% of the cost to purchase a new wheelchair. The Assistive Devices Program (ADP) paid the rest. Applications were made to 15 Service clubs and agencies such as Rotary, Lion's Club, Oddfellows, the Legions, March of Dimes among others, and their answers were always the same. It was toward the end of their fiscal year and they had no money left. I was left with no choice but to sign an agreement with the medical supplier saying I’d pay them $100 per month.
Needless to say, I couldn't do it. The only way I survived was by striking it lucky. I applied for a credit card and was approved. I guess, if one were to listen to the media and government announcements of today, one could say I was one of those "irresponsible ones" because I used the credit card to buy groceries in the only grocery store that would accept it, A & P. Considering the fact I paid the debt back in full several years later when I got a job, I would declare that it was not irresponsible, it was a necessary top-up to the government pension that enabled me to be well enough to look for work. I also used the credit card to buy medical supplies until the ODSP program was created and those expenses were finally covered.
I was desperate and hungry so I did exactly what society says will happen when one reaches that stage. I went into overdrive looking for work. I enrolled in the Job Club (a program with the March of Dimes) and I started to apply for 5 jobs a day. I had a chart showing who I applied to and the date, and then every week I would do the follow up calls. I'd do this weekly for 2 months, then monthly for 6 months, and then finally give up on that employer and look elsewhere. I wrote resumes and cover letters for every single one of them. The cover letters were personally addressed because I took the time to look up their name. To Whom it May Concern, Dear Sir, or whatever, was a format I would not accept. In the job club the feedback was always to say how inspirational I was to other members. I was congratulated on my method of job search and others in the club started to adopt my style. At the end of the program the facilitator told me that I’d put way more effort into this than anyone else did so, if anyone's going to get a job, I would. In the end I was the only one who didn’t get a job.
The reasons were, I use a wheelchair and I couldn't get in the door of most places, navigate through small spaces inside or use the washroom in the old historical buildings, because typically they were installed in the basement. The other big barrier was the limits associated with using pre-booked, and hard-to-get, specialized transit.
When the ODSP program was created followed by the Employment Supports Program, I was right in there signing up. Major and expensive testing was done. These included capacity assessments, career exploration, psychological testing, etc.
Here is a chronology of the timeline:
- Oct 1997 – self-referral to March of Dimes.
- vocational assessment
- physical capacities
Outcome - lots of ability. I was then left on my own to find a job and/or an education that would increase my chances for employment. I was unsuccessful finding work because of the reasons named above, and it was slow going to find the ways and means to get an education.
- June 2001 – Providence Continuing Care, Mental Health Branch
- strong vocational skills in administration
- lots of capacity but unable to work due to the level of sedation on the medications
- test results clearly stated I was so determined I was taking work home to get the job done when sleepiness prevented me from getting the job done while there.
Outcome - was advised to stop looking for work due to the effects the high level of sedation was having on me.
- May 22, 2002 – Certificate of Achievement received for Administrative Training
- June 2003 – Did secretarial work in a placement
Outcome - great report on my abilities, no help to get me into a job. I was sent on my own to start applying again. The outcome of the job placement could not be used as a job reference elsewhere.
- Sept 2003 – Started web production and design certificate program using Ontario Special bursary.
- Was limited to going to school part-time by the bursary so took 3 subjects, instead of 6.
- Nov 2003 – enrolled in a self-employment program with Opportunities Kingston with the goal in mind of becoming self-employed as a web designer upon graduation.
- Jan 2003 - Ontario special bursary rejected (at first). It was eventually reinstated and I took 3 more courses. Funding for course materials were rejected because "the course was computer related and apparently too many other people before me, had cheated." I paid for the materials using the credit card (about $1,000 worth). Was able to pay this debt off later.
- April 2003 - was refused funding to pay for final course that would get me to the half-way mark toward the certificate that year. Paid for the course myself using a line of credit.
- Sept 2003 - was approved for the Opportunities Fund. It too, would not pay for course materials. However the funding was guaranteed to be stable until the end of the course. Took 2 more courses.
- Jan 2004 - the 2 courses that were mandatory to achieving a graduation certificate were cancelled due to lack of enrollment. No equivalent course was offered anywhere - in another city or online. I asked for a course outline, found a non-credit course online that would teach me the skills, and then asked St. Lawrence College if they would allow me to teach myself the material and then test me at the end. They did.
The Opportunities Fund eventually agreed to fund a tutor after several months of difficulties trying to learn two semi-programming language courses on my own (JavaScript). Several more months later, I finally found a tutor. An advertisement was finally posted in KEYS employment agency and someone finally answered it.
- May 2004 - Psychological assessment done. It was paid for by ODSP
- The results clearly showed I had no bi-polar disorder and no borderline personality disorder. I also have a healthy adaptive approach to coping with chronic pain.
- June 2004 - Support from Mental Health Services was cut off because test results for employment supports ruled out a mental illness. The worst of it was I was under no obligation to share a thing. I shared the report because I was so happy I'd finally got well.
As a backgrounder, I'd been in the mental health system, mostly as an inpatient, from 1976 - 1995 (when I started to use a wheelchair). Services became so harsh in 1997 after my family hired a psychologist who unethically diagnosed behavioural difficulties. This determination was made based on information given to him by my parents. When psychological testing revealed a very different picture than what my parents were describing about me, the psychologist determined that I had developed "behaviour difficulties" as a coping tool so I could remain dependent on my parents. Considering I was a fully consenting adult in my mid-30's and hadn't lived at home since I could first move out at age 18, it is hard to fathom how this illegal action was allowed to stand and eventually be adopted as a formal diagnosis by all psychiatrists in Kingston. In 1997 I got a new family doctor and thankfully was successful in convincing her to take over prescribing the psychiatric medications and then start tapering me off them so I could get away from the psychiatrists. It is because of her, I got well. I have not been under psychiatric care or on psychiatric medications for years and I have had no relapses.
- April 2005 - completed the course
- Jun 2005 - formal graduation ceremony where Web Production and Design Certificate was received.
- Summer 2005 - Discovered that I can't become self-employed and work from my home. I live in subsidized housing and those rules either exist with that or the housing provider I live with. The concern was the liability associated with bringing customers coming into my home.
- Nov 2005 - Resumed ODSP employment supports with hopes of attaining a job with someone else.
- March 2006 - started placement at DigiGraphics (with help from Employment Supports Worker). This is what was said about the interview:
Louise completed an excellent presentation in the interview with the Senior Programmer at DigiGraphics. The interview was formal with Louise responding to questions professionally and with good accurate knowledge. Details of the placement were discussed to commence on March 23, 2006. Louise made good preparation steps in organizing her access bus transportation for the placement and received some orientation to the tasks at hand. Louise will be exposed to a quiet, productive and at times chaotic work station and she will need to adapt to changes and at times, unforeseen circumstances.
- June 15, 2006 - scheduled date for job placement to end. It was extended.
- June 30, 2006 - job placement formally ended. Contact with DigiGraphics and the employment supports worker remained. This is because the next phase was to apply to DigiGraphics as a formal employee on their payroll. It was also agreed that I would take a summer break to explore options for learning more skills that could be used at DigiGraphics. It had been made clear that funding for more courses would not be available. I was therefore exploring trying to teach myself the skills after consulting with the senior programmer to find out what's needed and how she recommended I go about teaching myself Cold Fusion (a web design skill). I also had to take steps to resolve a dysfunctional power wheelchair problem once and for all. The chair was defective and I had been limping along with a non-working power chair since December 2004, and later a defective power chair, since April 2005.
- July 12, 2006 - At a doctor's appointment I expressed concern about there being no funding to help further my skills so I could become employed at DigiGraphics so my doctor wrote the following letter to ODSP:
Louise asked if I would write to you to support her request for employment training. As Louise's family doctor, I see Louise regularly. Her recent employment placement at DigiGraphics has coincided with a remarkable improvement in her health. We speak of it often, and I assure you that Louise has found the experience immensely beneficial and is highly motivated to build on the skills she has acquired and developed there.
She would very much like to become a full member of the work team. She knows that in order to do that she must make real contributions. She has gathered together as much teaching material as she can find on her own including instructions on web based design in order to become such a full team member. The limitations produced by her illness fade into the background at work; this placement is an excellent match for her.
A formal training program would give her the tools she needs to advance her skills and allow her to make real contributions. I am confident that Louise would make full use of such a training program. I hope you will give her that opportunity.
- Sept 1, 2006 - resumed employment supports.
In the note from the employment supports worker it is stated:
"During the break, Louise appeared to have made some significant accomplishments in being able to secure a new wheelchair with better battery function and accessibility, and in accomplishing a Human Rights challenge to incorporate accessibility to buses in Kingston.
Louise took the summer months off and we met in September to review her vocational goals. Louise was asked to come prepared to speak to the challenges and progress she had made that brought her back to the vocational process after putting her program on hold. This was difficult for her to 'pinpoint' and it became confusing as to her perceptions of how the program was put on hold by her and what progress she had made since her break. A meeting was called with Kate Dyne at the ODSP employment supports office.
In that meeting I basically said I was prepared to teach myself Cold Fusion, that I needed a new computer to do it, and that Dad had agreed to buy it. I thought it would be a good idea to get a contract written up with DigiGraphics that basically stated, if I do this and could meet their needs in the end, they would hire me. I had had discussions with the senior programmer about this and she said she was willing to mentor me and that people who knew how to use Cold Fusion were very rare in Kingston. It appeared to be a given that there would be a job at the end if I learned this much needed skill for the business.
The challenge was, I was told that a contract with DigiGraphics before I made the investment in time and money to buy the new computer was unrealistic. That's why I had difficulty articulating my employment goals.
That's why, on October 24, 2006, it was decided that I would be in a better position to close my involvement with this service provider and work with Kate on addressing barriers that were needed to work on, in order to be clear with my vocational goals.
I was clear. They just weren't agreeable to my line of thinking to turn the job into a reality. The other fly in the ointment was the employment supports program was being restructured and Kate had been told that all people currently on the program must be fully employed by March of 2007. There wasn't enough time to enter into this venture and turn full employment into a reality. That’s the real reason why the file had to be closed.
It's sad that the formal notes don't clearly express how changes to government programming threw a monkey wrench into me becoming fully employed in the career I chose when I furthered my education using government grants. What a waste of the tax-payers money.
I then set out to get a job on my own.
- Dec 2007 - I got a full-time job at a call centre. I kept that job until August 2009, was working full-time, and was able to fully get off ODSP.
Some of the challenges that came up during the time I was working included:
- The closure of a grocery store around the corner in Jan 2008.
- This meant way more time was needed after work to get groceries.
- I was making trips to the grocery store several times a week before that because I had no help to reach groceries off the shelf or to carry them home after I bought them.
- When the store closed I was unable to get groceries a lot of the time.
- I was ordering in or eating out of the vending machine at work.
- A 60-day Access Bus strike in April with no realistic alternatives for transit. I started travelling the 11.5 kms to work by power wheelchair, charged the chair at work, and then motored home.
- A minor surgery on March 30th.
- The surgery failed, it caused incredible pain, and I ended up having to take a full month off work.
- I was between family doctors so I was unable to get the issue treated and I was unable to get a prescription for pain medication.
- Over the counter medications were not working.
- I had to live with the pain, with no pain treatment, for a full 2 months.
- After 1 month of zero income (nobody told me there was such thing as EI Sick Benefits), I went back to work despite the pain.
- In April 2009 I got a new family doctor. He misunderstood my level of frustration trying to cope with the failed surgery, the Access bus strike, and the exhaustion that came from only sleeping 4 hours per night so I would have time to motor by power chair to work, to run errands, to get to appointments etc., and diagnosed the tears as a mental illness - an adjustment disorder.
- In July 2009 the diagnosis of an Adjustment Disorder was given to the employer and I was told to take 6 weeks off work.
- No treatment was offered in the form of counselling, medications or a referral to a psychiatrist, so Shepell FGI did not accept his diagnosis.
- An appeal medical was written up quoting the DSM-IV for an adjustment disorder and adding, I guess for effect, that I had suicidal ideologies (which I did not).
- Again no treatment was ordered and I was not hospitalized for being suicidal, so the medical was rejected.
- I complained to the doctor and he fired me as his patient.
I've been unemployed ever since. I've asked to start a new file with employment supports but they have informed me that the employment supports counsellor who told my employer I was over-reacting to the limits I was experiencing with the barriers and number of tasks I had to manage on my own after work, was the only person I could get. I won't take her back. When she told my employer they could stop accommodating the time of my shift so I could get the Access Bus to everything I needed to get to, and then went to employment supports to close my file after I wrote her a letter to educate and better describe the impact of the barriers, needless to say I told ODSP Employment Supports I'm not interested. I then asked them to look for another job developer. Thus far, they have not informed me that they found one so, needless to say it's morale busting.
Every once in awhile I try to apply for jobs on my own, but the trend these days is to not accommodate the shift for someone who uses a wheelchair so they can get to work using the specialized transit system.
For all these reasons, I can only shake my head in wonder and ask, what are people (the government, the media, and the public) thinking when they publicly declare that all people with disabilities can go to work, may have to go onto the welfare system, and may even have to sign participation agreements?
If I wasn't high energy and more motivated than some (a trait that used to be diagnosed as manic), I could never have accomplished this much.
How on earth do they expect people with disabilities to endure all these gaps so they can become employed?
Please Read my other Blogs:
Transportation: http://wheelchairdemon-transit.blogspot.com
Health Care: http://wheelchairdemon-health.blogspot.com
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