Please share about yourself, your experience with the Disability Assistance Benefit, and anything else you would like people to know.
I live in central BC, and before my health got really bad I I did marketing and grant and proposal writing. In my early twenties I ended up with endometriosis, which is one of the reasons I went on to PWD, because I had it very severe. And then we found out that I have Celiac disease, which is an autoimmune disease, and a lot of people that have Celiac disease often get more autoimmune diseases. So because of that I also have Osteoporosis and Arthritis, and Psoriasis of my feet and hands. And I’m also dealing with an acquired brain injury. I use a power wheelchair.
But I’ve always been optimistic, so even though I have challenges, I still do the best I can to keep improving myself and keep moving forward.
I have to start off by saying that I am very thankful, and very grateful that in British Columbia we do have PWD benefits, because I can’t work, especially full time. Now, that said, there were a lot of cuts introduced between 2009 and 2012 to the PWD program, and those cuts have made a huge impact. I am in subsidized housing, but if I wasn’t I would either be living in a one bedroom apartment with no way to afford utilities, medication, food, clothing, the basics. Or I would end up being homeless, because we all know that $375 a month for rent is totally unrealistic. And even where I live, in the last three years, we’ve seen basement suite go from $750, $800 a month up to $1300, $1400.
That said, even though I’m in subsidized housing, I still struggle a lot to afford my medications, because I take five medications and some of them are not covered. For instance, my migraine medication is 7 tablets for $120.00, and those are not covered. And when I run out of those and I have a severe migraine my only option is to go to emergency, and because I don’t often have the $20 for the wheelchair taxi to get me to the hospital, and then another $20 to get home, I often don’t go when I really need to. I have two medications that are not covered whatsoever, and we have tried substitutions and everything, but I have a lot of allergies so a lot of medications that are cheaper or generic I just am not able to take, and that’s kind of part of the issue around people with disabilities – one size does not fit all. I just spent, in the last three weeks with my Psoriasis, $150 for one prescription, $38 for one prescription, $47 for one prescription. These were not covered. And I have to buy a cream called CeraVe for the Psoriasis. Now that’s not a prescription, that’s off the shelf so that’s not covered, and that’s $36 for a jar I go through in 2 weeks.
So I do have to make choices between filling all my medications for the month and the things that I need that are off the shelves that are not covered by medical or, do I buy groceries? And that can be a tough decision. And because I’m in subsidized housing I am not eligible to utilize a food bank. They don’t take into consideration that I require a special diet, they don’t take into consideration my bills, my medical expenses. So we have like a certified and accredited food bank that I don’t utilize, but I do sometimes utilize another service that will help me, but it’s only like every two weeks or even once a month. So there is definitely, I would have to say every month, I have to make a choice between certain medications, certain off the shelf things that I require, or food. Because I have to pay my rent, I have to pay my utilities, my overhead. That has to be covered or I just don’t have a home, so you have to figure out . . . are you going to rob Peter to pay Paul is really what it comes out to.
And I would love to be able to go back to work. I tried to go back to work, and because of my brain injury a lot of my executive skills were affected, and I haven’t retained the skills that I need to use Microsoft Office program, which would be huge part of me going back to work. So, I’m not even able go to work and make the extra benefit that you’re allowed to make. So, that’s a little bit frustrating, because I would love to go back to work, even part time and make an extra $600 a month. But right now, for me I’m not physically able to do that.
I haven’t had any trouble accessing the benefit, but I get frustrated with it. You know, one thing that I’ve really been kind of loud about with the ministry is, before COVID, if I had to travel from central BC to Vancouver for medical treatment before before April 2010, the Olympics, a person would receive $50 a day for a meal allowance. But the Liberals, right before the Olympics in 2010, they passed it as a legislated law, in Victoria, to lower those medical travel meal allowances from $50 a day down to $12.00 a day. So we still have that in BC, so people with disabilities that have to travel out of their region, more than 40 kilometers from their home, and require a meal allowance, they now get $4 a meal. And so if you have someone that say, has heart issues and has to eat a sodium free diet, or someone who is diabetic, or someone like me who has to eat gluten free, we all know, that that is really not possible.
The ministry says well you get paid money, you’re given money for food during the month. But let’s be realistic, if there’s $375 for your shelter, we know that that is going to be supplemented with your your food money. So if you’re traveling out of town, especially if you have special dietary needs, you are not going to be able to bring frozen food with you. If you’re traveling by plane you can’t bring your canned goods. When I say that people with disabilities are often invisible, they also have invisible situations. And this is one of them that you don’t see it, nobody really talks about it. If you haven’t experienced it, even if you are a person with a disability, but you haven’t experienced that, then you don’t know. And it causes quite a quandry for people when they have to travel. And that’s one of the big issues with people with disabilities, is food security. Now, nobody is really traveling right now during COVID, I’ve travelled once since COVID for medical, but these are things that really still need to be addressed.
And because the Liberals passed that as a legislated law, it’s on the books. And that’s part of the problem with the PWD field here in BC, is the government puts policies in place, and if they become legislated they’re in the law books. And once something is legislated it’s very very hard to change it or to expand it or decrease it. And so I think that’s part of the reason we have these issues that were having now, because in the past these things that were legislated. And this is part of the PWD issue, and most people are not aware of of that. That these things have become legislated, and that they’re hard to change once they’ve been put in place.
I find that the individual ministry workers themselves are usually very nice people. I find that there’s a lot of burnout. There used to be a time when PWD clients had their own separate office. It was a pilot project that started up here in Prince George, and yeesh, that was like 20 years ago. And it was amazing.
When we had a separate PWD office, we had our own separate PWD workers, life was just so much easier. Talking from my experience, I was able to become much more productive. I had one social worker, she knew my case history, she knew my medical file, so she was the only one I dealt with. So whenever I needed some form of assistance it happened very quickly. I didn’t have to go and explain my entire history to her, and it was just a good situation. And having that kind of support and help, I actually ended up going to work and working at the college doing what I love to do.
The other benefit of that is that people with disabilities are not people on social assistance. They’re two different types of clients with two different types of needs, and they need to be addressed differently. I mean, if you’re on social assistance or welfare, you’re on social assistance or welfare. If you’re on PWD, which I think should not be called “social assistance for people with disabilities,” it should just be “PWD benefits,” the needs are totally different. So now that we have the office working with both sets of clients again, there’s not a lot that gets accomplished for people with disabilities.
And because of all the cutbacks, one of the things that I have found . . . well the staff are really good, they are always helpful. But we don’t have as much staff now, so it takes away from that personal feeling. And, being a person with a disability, like I’m always gonna have it (the disability). So I should be able to go in and deal with one social worker, because this is why social workers do this work in the first place, because they’re people that want to help other people. And a lot of them get burnt out now really quickly.
There was a time when they put the social assistance and the PWD’s offices back together again. What happened was, you had everyone on social assistance, and I’m not knocking anybody on it, but the times are such that we have a lot of people with addictions now on social assistance. And now that you have people with disabilities and people on social assistance in the same office again, we now have people in line and there’s drug dealers coming up and talking to people in line saying “So you’re here to get your check, just let me know, I’ll drive you to the bank when you’re done.” And I had people asking if I wanted to purchase drugs from them, I had people ask me if I ever want to make extra money get ahold of them . . . and I’m like what are you talking about?
But this is my big pet peeve. I love the staff, they’re always helpful, they’re friendly. But it makes no sense to me . . . People that are on social assistance should have their own office with their own workers. And people with disabilities should really have their own office and have been given their specific social worker and they should be able to provide better support. I’ve used the service both ways, and I feel really strongly about that actually.
Contributions from friends, family:
If I don’t sometimes have family and friends purchase off the shelf medical products, and special foods that I require for my diet, I just wouldn’t have them and I would be worse off. There are many things that if my family and friends didn’t help me with I just wouldn’t have them, that’s just the bottom line. And that’s even in subsidized housing.
My power wheelchair is covered but, again, due to cutbacks in 2009, 2010, dental has been really cut back. Because of the Celiac Disease, and I have to take Dilantin, they both effect my teeth. I’m supposed to have my teeth cleaned every three months, which I did for years but now I can only afford to get them cleaned every every nine months. I had to buy a mouth guard and that was almost $500, and I had to pay $220 of that myself. The dentist is saying “you need this,” so they order it, and then you know, it’s a business so you have to wait ‘til you pay that bill and then you get the product. I went for about four months where I really needed that . . . I have medical items that I didn’t have the money for, so I had to pay on it every month. And I take that out of my food money. More needs to be covered for dental, really. I mean, I don’t need dentures or anything, but there should be full medical and full dental care. Even with Fair Pharmacare, a prescription was $150 for two tubes of special cream for the Psoriasis. I just don’t understand that.
And because I have a head injury I wear glasses, but I have a special prescription. You can only get glasses covered every three years, but when you have a disability, depending on what the disability is, sometimes your vision can change in six months. So, that’s a big one. People not having proper eye care. For me, I got my glasses, but I had to pay an extra $300 out of my pocket because I had to have anti-glare. I had to have a yellow tint because of the brain injury. And these glasses are two years old, and I need new ones now because my eyes have gotten worse. But I have to wait another 12 months. So, having the brain injury, how is that going to effect my vision in two years time? When I have to use these deterrent ones for a year.
So, the issues around not having proper medical and dental coverage, I think it actually causes more expenses in the long run. Why not pay $500 today for a pair of glasses that are going to work then have to pay me for eye surgery a few years down the road? And I know a lot of medical equipment is no longer covered. I had to go and buy a bath seat and a bath mat . . . I need a new cushion for my power wheelchair, but because my power wheelchair cushion is so expensive, and I still have two years left before I get a new one, I have to make do with that.
Things that often look good on paper are often really not applicable in real life, and that’s part of the problem with the medical and the dental aspect of it. If you’re on disability, it should just be mandatory that whatever medical care you need, or dental care you need, you get in a timely fashion. For instance, I had a friend on disability, and her dental care was not covered, and her teeth literally became little black stubs in her mouth. And they wouldn’t remove them because it cost too much, until she went to emergency. And hospitals don’t do dental surgery very often anymore, but because it ended up causing a blood infection she got them taken out. But then she had to find work that would cover them because only a certain portion of dentures are covered. So she had to find work, start part time, get on full time and then be there for two years so her medical would kick in from work. And that’s how she had to get her dentures.
You know, when you have a disability, meeting your basic needs and the necessities of life, it should not cause you such frustration, because when you’re living with a disability life is already extra work than the average person. And then you add this lack of medical supplies, medical supports, prescriptions, your dental care, your eye care, even physio. For people with disabilities, these are our basic needs. These are not things that are extras for us, these are things that we need to be able to function.
And one of the other parts of this is physiotherapy. I’m supposed to have physiotherapy twice a week. I get, I think it’s six or eight physiotherapy visits per year where I only have to pay $20. So for me, I can go for two and half months at $20 a pop, and then after that I have to go back to paying $70 a visit. So am I getting the physiotherapy that I need? No, I can’t afford it. Last time I went for physio was July, and that was just one month. That was one time in one month. And it’s instead of going eight times in a month.
And, I’m also supposed to have massage therapy, but again, you can only go for a certain amount of times, and then you have to pay full price. So because I require physiotherapy and massage therapy, in two years I’ve only gone for massage therapy once, because I have to choose which is more important. And physiotherapy is something – I can do those movements over and over on my own, so I kind of have to pick which am I going to get more of a benefit from? And that’s really frustrating because with these disabilities that I have, none of them are self-inflicted. One of them I was born with, the Celiac Disease, which in turn created these other autoimmune diseases. And then I was in an accident.
If I’m dealing with this I’m sure there are other people dealing with this in BC. The whole system really needs to be revamped, and I’ve always wondered, you know, they do all these support groups and these focus groups and these studies, but I rarely hear of anybody with a disability being involved in the decision-making. And that is one of the biggest things that needs to change, is if you don’t need these services, you don’t know. There are people making decisions for me and my life, and they are able bodied people and they don’t have disabilities, and they’re just taking their information from reading different reports, and not actually talking to people.
Because of that, I have lost a lot of friends disabilities that couldn’t get into subsidized housing, couldn’t find a roommate that they were compatible with, and just get so fed up trying with the daily struggle, of trying to get their basic needs met, that they have committed suicide. In the PWD community, you know, if you were to do research, the suicide rate is pretty high for people with disabilities. And, you know, there’s big talk about addictions right now. I believe that a lot of people, I would probably say maybe 15% maybe even 20% of people with disabilities have some form of addiction through trying to self medicate. Because they are not having their basic needs met, whether it’s shelter, food, medication. Because when you’re hungry and you don’t have anything to eat, or you’re in severe pain and you can’t afford the medication that will help with the pain, let alone painkillers, people tend to self-medicate, because what are you going to do? Not everybody has a strong willed disposition, do you know what I mean? And people with disabilities are often, you know, they’re stressed out, they have anxiety, they have depression . . . And I’m talking about people with physical disabilities, not even taking into account people with mental health disabilities. It all becomes very overwhelming, you know.
I used to be a businesswoman, a lot of my friends are business people, and they don’t know that I live on $1200 a month. And I I get a lot of invitations to go places, and I have to turn them down but, you know I went out with a friend a few weeks ago. She said, “Oh, let’s go for lunch,” and I wanted to do that. I wanted to feel like I’m part of society. So, I went, and I have to eat gluten free food, so I spent $18.00 on an amazing lunch, but I didn’t buy any groceries for three days. I went without almond milk, I went without lettuce, and tomatoes and produce, because that’s a choice I have to make. Going out for lunch with my friend makes me feel a little more normal. Because all my friends go for lunch together all the time. You know, most people do that. And when you’re on disability, you don’t have the the energy, or the cash, to be able to do those kinds of things.
And my friends invite me out for lunch a lot. I am lucky that I have friends that are like “Yeah, I’m going to pick you up for lunch, don’t worry about it.” Sometimes I say yes, but sometimes I say no because I kind of feel like I’m maybe a bit of a burden on them. And these are the ones that know that I don’t have a lot of money.
When I was in Vancouver once for treatment, and I had to stay longer, I had no money, I didn’t have any money. And the ministry did not send me any money for a day and a half, and this is before I knew I had Celiac, and they finally sent money, so I went to eat in the hotel restaurant. And I had prawns alfredo. And they were so mad, that worker phoned me in my room and lambasted me for over an hour. How dare I order fettuccine with prawns. How dare I? Well, I can’t have beef, I can’t eat pork, they were out of chicken, so that’s what I ordered. So I had to take that out of my own money and pay that back. Can you imagine? I’m super sick, I’m in Vancouver, I’m seeing the neurologist. I’m being tested for epilepsy, and I was down there for a long time and not eating. Like I didn’t have any money, because what do you do when you have such a little bit of money? It’s not like you have spare change right? I had nothing to eat, I didn’t even have change to go and get a pop. So when they finally came through I went and got something that would fill me up. It would taste good, it would fill me up, it would re-energize me, and it would kind of stick to my ribs. And then for her to, that worker literally screamed at me for an hour, and when I came home I had to go into the office and give them back that $20.
And that’s kind of the stigma too with people with disabilities. “Oh, you’re low income, you don’t wanna buy that.” Even though it’s really nice and it’s like well sure, why wouldn’t I want to buy it. I’d like to have a nice TV. Just because I’m on disability doesn’t mean I can’t have a steak dinner or lobster dinner once in awhile?
What do you dream support for people with disabilities could look like?
A perfect world people with disabilities would have timely access to whatever medical and dental and eyewear needs, when a specialist or doctor says “This is what you need,” that those needs are being met. And and that people with disabilities really should, particularly if they’re not able to work full time, they should be able to have an income from the government that is at the same level that the federal government says is a level of poverty. Because in BC, the federal government says that the single person who makes less than $26,000 a year is living in poverty. So why is it that the provincial government says a single person can live on $13,000 a year, when that is half the level of poverty. Really, for me, I I don’t understand how that is justifiable.
One thing I would say to the government would be to separate people that are on social assistance, that should be it’s own ministry, and then people with disabilities, that should be their own ministry, and their own programs, and their own budget and everything.
The government also needs to seek out more input from the disability community, and across all socio economic and cultural lines. They need to be more involved in policy and decision making, there should be focus groups going on constantly around new policies that are being made. And those focus groups, they should have four people from the ministry and four different people from different types of disability. Because this is why the program for people with disabilities has become stagnant. Because you’re not having the end users being involved in the prime decisions. PWD need to be involved in protocols, and give feedback on what works or what’s needed.
When it comes to things like accessibility, PWD’s also need to be asked. People without disabilities have no idea what is needed. For example, someone who doesn’t use a wheelchair just thinks you need to be able to fit a wheelchair into a space. But when I use a “disability washroom,” that’s supposed to be accessible, like the ones at the hospital I go to, and I can’t turn around in my wheelchair, it’s obvious the builders didn’t talk to anyone who actually uses a wheelchair. This is everywhere; in restaurants, malls . . . So things might be accessible on paper, but not in real life. Can I use the ramp when it snows? Can I fit my bags or my groceries? This is why people with disabilities need to be part of the process from the beginning.
I’m not a professional advocate anymore, but people still know me from that work, and they come to me for help sometimes. So I help PWD with forms and letter writing, and other advocacy work they can’t do on their own. And I just see how many people fall through the cracks because they can’t do all the things they need to do to get help.
Like I applied to get a medication covered by the ministry, that I need for my Psoriasis. Right now my hands crack and they bleed, and the medication would help with that. My doctor wrote a note, because if he wrote a letter on his letterhead, like the ministry required, he would charge $150. So he wrote a note because it was free, but he couldn’t fit all the details, so they rejected it. So now I’m filing an appeal, but I have to spend $150 to get the official letter. So that’s something I can do , but costs like that add up, and it’s hard for people to navigate, so they fall through the cracks.
When I imagine what it would be like to have enough support, to not have to worry so much and use so much of my brain energy making sure I can pay rent and bills, and afford food that is ok for me, and to be able to use physiotherapy and massage therapy so I could have energy and feel ok . . . If I didn’t have to choose between my medication and food I can eat . . . I imagine how much I’d be able to contribute. I want to go back to work, but when you have a disability it’s hard, because you can’t work if you don’t feel ok. But you only feel ok when you can afford what you need, like medication, and supplements, and the right food and therapies. But you can’t afford those things unless you work.
If PWD had our basic needs met, and proper support helping us, and a liveable, sustainable income . . . I just think about if you could measure that productivity in dollars. Like people want to be involved and contribute and work, but we have to focus on survival. It’s an untapped workforce.
Music, classical music, violin, trumpet, flute, calligraphy, nature. Blue, white, flaming, rust, blues and greens, outdoors, stars, the moon.