Sunday, August 30, 2015

Half-baked policies and unstable platforms: disability and the 2015 Canadian election

March of Dimes Canada has recently released their primer on party platforms on disability issues. This could be useful for people who are still undecided voters - although I am hardly surprised on what each party has put forward in their platforms. I'll offer some commentary on the March of Dimes breakdown, then offer some further commentary rant at length.

The Conservatives offer tax breaks, useful to those who have a home they can renovate for accessibility. A non-refundable income tax credit is no good for those of us who do not own a home, or who lack the cash to pay for the renovation, or whose incomes are too low to pay income tax - a significant concern, since people with disabilities are overall poorer and more underemployed than the average Canadian. The Conservatives also promise funding to help people with disabilities to re-enter the job market, which is all well and good for some people - but woefully inadequate for many, many more. The Conservative promises are nice and shiny for people who already have money, but insulting to the rest of us.

The Liberal platform on this regard is better, but still rather flaccid. An accessible website shouldn't even be newsworthy - that should have happened ten years ago. Honestly, if you're advertising that, it means you're scraping the bottom of the barrel to look good. They're following the Accessibility for Ontarians with Disabilities Act - so basically, complying with the law in one of the ten provinces and three territories that they serve. Home mail delivery is important for many urban and suburban voters, but that's not just a disability item; lots of non-disabled people like their mail at their doorsteps too, and home mail delivery is hardly a big-ticket item in the grand scheme of things. Revolutionary social change, coming soon to a mail slot near you? I think not. Old age security eligibility is similarly just reversing a change that the Conservatives put in, restoring a not wholly adequate status quo. Showing leadership, and collaborating with provinces and territories. OK, this is something - maybe. Superficially. This isn't a measurable goal. How much will wait times be reduced? What will home care look like, when they get involved federally? The Liberal platform, to me, looks like their attempt to Not Be The Conservatives.

Disclaimer: I've always been an NDP voter, not because I'm in love with them but because I prefer them over our other options. So my appraisal of the NDP might be prejudiced - though I am inclined to criticize everybody and am trying to be fair. 
The NDP's "Commitment to Accessibility" looks good. It really, actually does. If this happens in practice and not just on paper, I like it. I'd like more detail on their constitutional provisions, and perhaps that's some research I'll do over the weekend - how specific are their goals? Can we evaluate them, one election cycle from now? As for their platform, it's leaps and bounds ahead of the Liberals or Conservatives, in my opinion. Still, we're seeing little boosts here and there, rather than major, systemic change. Again, what will home care look like, under the NDP? More on that later - home care is a pet peeve of mine, because of its inadequacy. The housing strategy could be big. It could be peanuts, but at least they're offering something that would be good if they managed to implement it successfully. A girl can dream.

The Green Party's platform also looks promising, and I only wish they got more widespread support so we could see their policies in action rather than just in discussion. I would love to see a Canada Disability Act - something with the potential for major, systemic change. Similarly, a national equipment fund, if it's adequately funded of course, would make a difference for a great many people.  And they are the only party to touch dying with dignity as an election issue. So we have two parties offering platforms that could get us somewhere. Maybe. But is any of it enough?

I wholeheartedly believe that even the NDP and Green platforms, which are far more robust than the Liberal and Conservative platforms, offer too little to people with disabilities. I want to see more.

A few policy changes that have to happen:
- If disability means you work only part-time, you may not qualify for EI, even though you pay into it. So then what good are the disability provisions under EI? Or CPP-D? I want to see minimum hours-in-a-year eligibility requirements waived for people whose disabilities prevent them from working enough hours to qualify. This would, for instance, enable someone to work a few hours per week, then take a few months off for a surgery, a relapse, a rough patch, pregnancy, whatever. At the very least, low-income people who would never qualify for EI due to a disability should be exempt from paying into it. It's only fair.
- Presently, people applying for provincial disability assistance first have to apply for regular income assistance (in at least the provinces I'm familiar with), and then wait. And wait. And you have to be skint to qualify. So if you're saving up for a down payment and find yourself disabled, you have to clean out your savings first - and then never save up large amounts of money again, which is super fun if, say, you're saving up for the medical equipment you need because you have a disability. If everything were covered, this wouldn't be as huge an issue - but not everything is covered, and not everything is covered right away. If you live in a different city from your medical specialist and have to fly down for an appointment, that costs a lot of money, and paying up front can be tricky if you haven't been allowed to keep enough money in your bank account to raise funds for a trip. Plus, people with disabilities need to save for a rainy day. Refrigerators and cars break down; relatives die across the country. Savings are a good thing and Canadians are constantly told to save, save, save - yet if you're on government income assistance, savings are banned.
- Home care. That's another thing that's hard to get coverage for. If you can bathe yourself, they think, you can look after yourself. Except if you ask even just a handful of people with disabilities, it'll become abundantly clear that while that's true for some disabled people, it sure isn't for others. Even at my worst, I could always bathe myself. It wasn't dignified, but I was still independent. But cook? Whoever said that bathing was harder than cooking and the necessary housekeeping one needs to do in order to live in a hygienic home either bathes in a fancy circus pose or has a fully automated kitchen and a robot to do everything else. Ability to bathe is a low bar for assessing eligibility. That, and when you become newly disabled and seek services, you wait, and wait, and wait. I put in calls for help at home in October of 2014, and I'm still waiting. I waited for so long that I no longer needed the services. So, most of the parties are talking about home care. What are they offering, and to whom?

We also need a national strategy for paraprofessional care, drugs, and equipment. CBC's The National discussed this last week. Did you know that Canadians pay for-profit drug companies astronomically more than New Zealanders do, for the same drugs? I was blown away. Watch the clip. That's also where half of this rant has come from, for what it's worth - it's just been percolating for the past week.  The panelists talked, among other things, about a national drug strategy. There are so many things that we need covered that aren't covered, or that aren't covered enough. So here's a few:
- Yes, many provinces cover prescription drugs for low-income people. But moving between provinces gets everything all gnarly. For instance, I can get all my regular medications covered when I'm in British Columbia. But if I travel elsewhere, which I have to for my work, I can't get prescriptions covered there. Bringing medications from home works when everything goes as planned, but when you have an illness or disability, that doesn't always work out. This spring I had to buy a medication that cost $80 for a supply that lasted three days, and because I was in Ontario, BC wouldn't cover it. My supplementary health insurance is tied to BC's Pharmacare - so if Pharmacare says no, other insurance says no, too. The same thing happens with paraprofessional coverage: the limited massage and physiotherapy that I can get in BC vanishes as soon as I cross into another province. Plus, not all provinces cover the same medications. Move to another province, and suddenly you're filling out special authority forms for drugs you've always gotten without hassle, or testing out alternative medications when the old ones are more expensive.
- Access to drugs. Canada is still waiting on our Orphan Drug Regulatory Framework to help people access medications for rare diseases. Off-label drugs for rare diseases are also hard to get coverage for. Getting treatment feels like doing a steeplechase. Eventually you give up and start sunning yourself between the jumps, and hope for the best.
- Medical equipment. Super fun stuff. Need leg braces? If you're over 18, BC's Pharmacare program won't cover it. Those can be expensive. Even custom orthotic inserts for shoes are a few hundred dollars. Oh, how about catheters. Let me tell you a fun thing about those: that can cost about a dollar each. Some people need four of them a day. That's $4 a day, just to pee. If you need to self-catheterize and you don't, you're at risk of serious bladder and kidney damage. It's medically necessary. Pharmacare coverage? Nope. BC Pharmacare covers ostomy supplies, so anybody who's had bowel or bladder surgery gets coverage for supplies, but if you don't meet that eligibility criteria, your supplies aren't covered. Because we all know people buy catheters in vast quantities just because people think catheters are cool. Catheters and various continence supplies can be covered by the ministry, if you get disability income assistance, but they insist that you have no other resources - and the definition of "no other resources" is very, very harsh. If you're a student, it's supremely difficult to get this stuff covered. We need a national strategy that will fund everything that is medically necessary.
- Paraprofessional services. If I weren't from a middle-class family that could pay for physiotherapy costs, I doubt I'd be walking now the way that I am. Physiotherapy, massage, speech and language, counselling - and lots more. These are hardly frivolous, but they're also hardly covered. In some provinces, you can wait for eons for a few sessions that are funded. In BC, you can get physiotherapy relatively quickly, but only part of the cost of each session is covered - so, if you don't have a good $100 per week to cover the un-funded portion, tough. You don't get anything. And of course, only the first ten sessions get this partial funding, which isn't enough for people getting treatment for anything severe or chronic. And can we talk about podiatry? If you have certain problems with your hands and need a simple surgery, that's covered. More or less the same thing with your feet would be done by a podiatrist, and they're not covered. Just like medical supply coverage cares about bowels more than bladders, apparently the powers that be really just hate on feet.

It's 1:30 AM, I've just concluded that Canada hates feet, and perhaps it's time to stop ranting for the night.


Anonymous said...

Very entertaining.... and also very accurate. Thank you for putting into words what I have been experiencing as a disabled person in BC. The things that one has to pay for oneself? Unbelievable.

Dragon said...

And of course - this is only the tip of the iceberg.

I entirely forgot to mention how HandyDART won't accept the reduced disability bus pass, or senior's fares, and instead insists that passengers pay the full adult rate.