Monday, November 21, 2011

AMONG THE INVISIBLE ...

One day on the bus heading downtown, I met a man who appeared to be in his forties, and clean shaven. He was carrying a small briefcase and a local newspaper. We started to talk, and he was able to intelligently discuss the news, the politics of the day, and issues of tomorrow. When I asked the man what he did for a living, he told me he was on the Ontario Disability Support Program. One would not know this, unless he told you. I can only assume his disability is invisible and probably creates barriers that nobody can see, and are usually unaddressed by legislation like the Accessibility for Ontarians with Disabilities Act. He may or may not be able to work, but one would guess that he would not dare venture to explain his disability to an employer, fearing instant judgment even if he could benefit from some type of accommodation.

I also know people in the region who have disabilities that people can see. They use wheelchairs to get around, work with seeing eye dogs or wear hearing aids. They can acquire 'disability' aids from the Assistive Devices Program (ADP), and if they are on ODSP, they can get the 25% balance paid by them. That is a good thing, and there is no argument or reasoning to put a stop to this, as people need what they need to function and to participate in society, regardless of their disability. This is the same with respect to the Disability Tax Credit. At one point, of no value to people that earned little or no taxable income, the Disability Tax Credit is now the gateway to the Registered Disability Savings Plan (RDSP). This Plan is set up primarily for children and young adults that have family able and willing to contribute, and whose disability qualifies them for the Disability Tax Credit. Unfortunately, those with invisible disabilities cannot qualify for the Disability Tax Credit without almost pleading themselves incapable of living independently and making their own decisions. This applies to some people with invisible disabilities, but people with visible disabilities who could live independently, are mentally competent and even hold high level jobs, can qualify for the Disability Tax Credit.

More than 80% of the people on the Ontario Disability Support Program, or ODSP, have disabilities that are invisible, whether that be mental health issues, learning disabilities, epilepsy, intellectual disabilities, brain injuries, among many more. Most of these people, particularly if their disability is episodic, do not qualify for the Disability Tax Credit. Therefore, even if they had supportive family and a good environment around them, they cannot save for their own retirement, which is doomed unless the person wins a lottery after they turn sixty five. These people will be forced to rely solely on public pensions, or "seniors' welfare", which does not equal the poverty line anymore than ODSP makes it to the poverty line. Henceforth, after sixty-five, an ODSP recipient loses many benefits, such as dental benefits, eyeglasses, full ADP coverage, among other assorted health needs that one can argue people might need even more AFTER they turn sixty five.

At the present time, the only ODSP recipients that will be able to enjoy any kind of retirement at all are those that qualify for the Disability Tax Credit due to a largely visible disability, have family or others that are able and willing to contribute to the RDSP pot, and were young enough to receive the benefit for enough years to make it worthwhile when it started. Others applying for ODSP, including spouses, have to drain all of their retirement savings, as well as any other "rainy day" funds down to a bare minimum, and forget about ever retiring out of poverty. I can't say what percentage this would be, but I would estimate about twenty percent at the outset would benefit from the Disability Tax Credit. It is no small wonder many financial writers say that this tax credit is "under-subscribed" - it is not under-subscribed, but its eligibility criteria is so restrictive that only a minority of people with disabilities are eligible.

Even for people who are not on ODSP, but would like tax relief of this type. After all, you don't have to have only the stated restrictions to have added costs due to your disabilities. If you were a teacher, for example, with bipolar disorder, or a registered nurse with a mild form of schizophrenia, you might not even WANT to try to make yourself eligible, as your professional body might begin to investigate your competence to practice in your area, because in order to declare the tax relief for a mental disability, you have to be incapable or only able to do with help or very slowly, a number of mental functions, even if you can competently handle other functions. For example, if you are unable to balance your cheque book, you can forget about your career as an accountant, or if you have difficulties making decisions, you can forget about your career as a nurse. Yet, if your disability left you in a wheelchair or visually impaired, while these limits are definitely difficult to live with, you can still be a lawyer, a company CEO, a nurse, an accountant, or whatever, given specific software and other accommodations available to you, and get your tax credit and an RDSP. This makes many persons with disabilities reluctant to apply, which means that this benefit becomes under-subscribed, as visible disabilities are probably only about 10% of all disabilities that are possible.

In various groups I worked with, it is difficult to work with a lot of the individuals involved. When one of the groups I met with discussed the social assistance review, those with highly visible disabilities felt that only they should receive the higher amount of income support, because after all, they have "higher disability costs" than say, somebody who has a mental health issue. I dispute that, but this is an impression that many people have. I also met people who have various invisible disabilities, such as multiple chemical sensitivity, chronic fatigue syndrome, narcolepsy, migraine syndrome, post-stroke recovery, certain types of brain injury, and related disabilities, that may leave one not markedly restricted from any of the activities on the disability tax credit list, but they certainly do have major disability related costs. Persons with multiple chemical sensitivities often cannot do their own shopping or yard work because of the smells, the released fragrances of various products in the store, that even if they are not buying the products, they are nevertheless exposed. Chronic fatigue sufferers vary in their needs, but living alone, they may not be able to prepare their own meals, keep their homes clean, or even drive. If one lives where there is poor transit, they can spend hundreds even thousands of dollars on taxis or paying others to drive them, or do work for them. They cannot recover most of these costs, and therefore, many do not expend it if they cannot afford the upfront costs.

Living with an invisible disability has many effects on a person. Because the disability cannot be seen by others, unless the other person is either also disabled in a similar way, or a loved one is, they feel misunderstood and their problems and issues minimized by their community. In the past, when I employed staff for projects I was involved in, I tried to understand invisible disabilities, as well as the more obvious ones. This is something that is difficult to do, even for somebody like myself, as the person needs to disclose to me first. In one case, the person was frequently late for work, appeared sluggish sometimes during the day, and at times, rushed to complete projects at the last minute. He did good work, but these limits concerned me. Instead of applying disciplinary measures, which I had every right to, as the lateness was almost everyday, I asked him to tell me what he needs to help him do his job better. I told him I didn't want to see him rushing everything at the last minute; was there something I can do for him? He disclosed a number of issues, including narcolepsy, migraine syndrome, and other similar health issues. I asked him to tell me what makes him feel better. I learned that a half hour rest during the day, and flexible hours to meet deadlines would work. Once I applied that, his work was excellent and high quality.

Unfortunately, most other employers during that time frame in my life would only take the hard line about the lateness and the sluggish performance, and wonder if there were other problems, usually of a social nature and not disability-related. Over time, as I became more experienced in managing people, I accommodated persons who had care giving responsibilities, daycare needs, as well as those with other kinds of problems, such as English not being their first language. All of these people turned out to be excellent employees, and performed well when accommodated and understood. The accommodations were provided privately, and in a flexible manner, so that the person's privacy was respected, while at the same time, results were still expected. In one program I ran, there was a large outreach component to it, when it was funded. One of my staff was visually impaired, while I had others that were able to drive. Prior to the outreach role, the visually impaired person spoke to people on the phone, used the computer to type reports and simple correspondence, as well as counseled people in the office. She wanted to do outreach work. Given that Niagara has poor public transit, especially between communities, I had the two other staff persons do outreach outside of the head office's city, and I allowed the visually impaired person to conduct outreach within my city, using public transit to set up meetings, and organize sessions with stakeholders. She did well, and I was able to increase her work hours as well, which she wanted.

When a person with an invisible disability is not accommodated, it impacts on them psychologically. They begin to notice their disability more, and how it makes them different and less than, as opposed to just needing another work around. They can become very discouraged and become less motivated to try new things. Many will not even apply for jobs that appear to be not open to them. Employers need to learn about what is actually required in a job, not just what is nice or how a job is typically carried out. An outreach worker for my earlier project would typically drive to the various locations of the meetings we set up, and meet with people in their homes, or in public places, such as a Tim Horton's. In my mind, all I needed was an outreach worker that knew how to use public transit, and was fairly mobile in terms of using it, and can handle the "people aspects" of this job. For the person with narcolepsy and migraines, he would not have been able to carry out a full work day, if I had not found a quiet place he could lay down for about a half hour a day. Given that rest period, he was as productive as everybody else.

Most jobs can be restructured or accommodated if an employer knew how to think outside of the box. These accommodations did not cost my company very much, nor did others actually notice any impact on their own workloads as a result of my ability and willingness to accommodate the needs of these very capable people. If employers continue to not think outside the box, more and more people will be unable to work for them, or won't even bother applying for the job. I live in a region where almost every job, even office jobs, require candidates to have their own driver's license and vehicle. Why? If I was the employer, there would actually be very few jobs that would require these qualifications, even in a region like my own. If a person needed to travel sometimes outside of the office, I would instead put, "job involves some travel throughout the region for meetings and presentations". Whether the person conducted themselves to these meetings by personal vehicle, by bike, by bus or even by chauffeur, that is not my concern ... my concern is can they function at these meetings and carry out these presentations? The only jobs I would require a driver's license and personal vehicle are for jobs in which they are required to drive, such as bus drivers, taxi drivers, couriers, delivery people, limo drivers, etc.

The same would apply to many other "qualifications", such as ability to type. What if the person was unable to type, but were quadriplegic? There are computer programs that would allow that person to do exactly what I am doing now. My question would not be, "Can you type?", but "Can you use any kind of computer or other device to produce documents, reports or letters, etc.?" (if that was part of their job). If these things are so common sense to me, how come other people in charge of human resources and employment haven't caught up yet?

We have to move forward and away from "old school thinking". We have to see jobs in terms of what you need as a result or required outcome, not a process or typical means of completing the job. I hear all the time from people with disabilities, both visible and invisible, about how they wish they can work, or wish they can even volunteer for somebody, but employers and agencies don't even think beyond first base; that is, they don't consider that people need different ways of coming into their building, as well as accessing all the necessary amenities within it. Just as I would never dream of leasing an office in a multi-story building without an elevator and doors wide enough to admit even powerchairs, employers should be thinking the same way. If a visually impaired person applied for a job at my office, and they seemed to be the best candidate, I would certainly endeavour to learn how my computers can work with that person, such as what software, what website design styles, etc. would work the best for them. I would even think of how a phone can be designed for that person's use as well. These things are not that expensive, and if all employers, all facility managers, all service providers and others, considered the importance of these things, there would be less of a need for ODSP and more of a meaningful and rich life for millions of people with disabilities of all kinds.

And back onto the topic of the Disability Tax Credit, wouldn't it be wonderful if the tax credit actually related to YOUR true costs of your disability, and not just some imagined or conjured set of restrictions that appear to leave many people out, and as a result, substantially disadvantaged when other programs become tied to it?

Your thoughts?

3 comments:

Historia said...

This is so spot on Angela, thank you.

My spouse is also on the ODSP. Despite the fact that he is in a lot of pain and sleeps a good part of the day (he has arthritis and fibromyalgia) he does not qualify for the disability tax credit because he can still look after himself.

It really sucks that the DTC is so restrictive.

Whoever designed these restrictions assumes that only the "visible" disabilities are "real" disabilities - and those people with invisible disabilities just plain dont exist.

Cesca

wheelchairdemon said...

I'll add one more thing. When a wheelie does their best to compensate for their limitation, they develop shoulder problems, back problems, and repetitive strain injuries in their wrists. They also develop high levels of frustration around their limitations. If they talk about it and express that frustration to their doctor, what happens? You know my story. The doctor didn't understand the impact of having no transit to get to work during a specialized transit strike so they diagnosed a mental illness - an adjustment disorder - to be exact. The employer knew I was not mentally ill so they rejected the medical and the appeal medical and I lost the full-time job.

The accommodations you have made with employees that have an invisible disability are admirable. It's too bad there aren't more people like you.

If you didn't think to ask questions of your employee, he may never have self-disclosed. Why? Because of stigma and fear of being misjudged.

Keep doing what you're doing - educating. Thank you for the insightful post.

Andrea Hatala said...

That is so true. The high numbers of people on Ontario disability are due to the folks that do the hiring rather than the people that are on disability. If employers want to see things change, they need to change there attitudes. Not just blame the people that are disabled for being that way.