Out of the Frying Pan and Into the Fire

As my Canadian readers may know by now, the CNIB is circulating a petition asking the government of Alberta to take responsibility for its visually impaired citizens in a way it has never yet done. For the last century, the CNIB has shouldered all rehabilitation service for the province’s blind population including orientation and mobility, independent living skills, low-vision assessments, deaf-blind services, etc. On a national scale, the CNIB has also provided library services for all blind Canadians, relieving public libraries of the responsibility of providing accessible materials.


For those of you unfamiliar with the CNIB, particularly my American friends, it is a non-profit charity organization, relying on government and public funding to stay afloat. Stay afloat it has, though not without frequent setbacks, downsizing, and restructuring. More than once, the CNIB has hinted that they may have to shut down their library because they could no longer afford to maintain it. For dedicated bookworms like me—particularly for braille-loving bookworms—this is an unwelcome prospect.


As of April 2016, Alberta’s CNIB branch will no longer be providing rehabilitation service to Albertans; instead, the organization wishes to encourage and assist the government in taking up the job themselves. I can see the logic: in our current medical system, if you have been paralyzed from the waist down, you are given rehabilitation therapy. You’re not just sent home, pointed towards a charity, and left to your own devices. If you are blind, though, you can be sent home immediately after you have been pronounced healthy, and there isn’t even a legal obligation to point you towards the CNIB. Imagine the shock and devastation of being newly-blinded, only to be dismissed from the health care system with no instruction on how to get around, cook, clean, or even figure out how to organize your own belongings. It’s doable, of course, but many newly-blinded adults (as well as small children who have been blind from birth and are just figuring out the world around them) need the service that CNIB provides. My question is, will we be worse off once the responsibility changes hands? If we go by the current state of the Alberta health care system…there’s a good chance the answer is yes.


In theory, it’s a wonderful concept: if the government adopts a similar system to the one in the US (where rehab services are funded and administered by the state, not by charity) there is much less chance that the money will simply run dry one day, leaving everyone stranded. The CNIB can turn its attention and energy to other matters while the government pays for the necessary care of its own citizens—citizens it has gotten away with mostly ignoring for the last 100 years. Instead of relying on relentless fund development campaigns to make sure I receive the services I need, I now only have to present my Alberta Health Care card to be shown a new route, or be assisted with a new work situation.


Here’s where the fairytale dissolves, though: the health care system is far from perfect. Even emergency medical care is flawed beyond what I could possibly describe in this post (or any mere blog post, really). You can wait hours and hours at the ER just to receive basic and essential care when you are desperately ill. You can wait months (or even a year or more) to undergo tests and surgeries if your condition is not considered immediately life-threatening. Sure, you can fasttrack and go private, but that sort of defeats the purpose of our wonderful socialist care system, right? Isn’t that the whole point?


Things are already pretty bad under the stewardship of the CNIB, at least for many Albertans. I grew up in Northern Alberta, and CNIB specialists were only able to travel to me on a sporadic basis for an hour or two each lesson. Eight hours of driving for them, and only two or three hours of training for me. When I was a child, they were very helpful and supportive of my parents, but once I got older and needed Orientation and Mobility training, they simply didn’t have the resources (human or otherwise) to serve even my most basic needs. I was fourteen before I was taught precisely how to use a cane properly, and about sixteen before I knew how to cross a freaking intersection with any degree of safety! My transition to the city at seventeen was rocky, to say the least.


Even when I moved to Edmonton, though, things weren’t a bundle of roses. Currently, there are only two O and M specialists serving the Edmonton area, and one of them does not work with adults at all. Oh yeah, and they are not exclusively tied to the Edmonton area; one of them goes out to Northern Alberta to assist rural clients. So, you have one full-time specialist serving the entire adult blind population of Edmonton. That might sound reasonable enough, but I can tell you that getting O and M service is an absolute nightmare. Unless it’s an urgent school-related situation (they won’t even help you with work, I tried), you could wait months to receive training unless you are ridiculously persistent. There is a triage method of sorts—the most important cases are theoretically dealt with first—but that kind of thing can easily be manipulated. If your situation is less grave than someone else’s, but you are very persistent or persuasive, you might receive service more quickly.


Arguably, the impersonal nature of the Alberta Health Care system might help mitigate some of these problems…but I really do think we may be going from bad to worse. For one thing, we already know the triage system is flawed; how much more flawed will it be for rehab services, which are not considered necessary for one’s actual health? Sure, it’s inextricably linked with quality of life, but who has the time or money to worry too much about quality of life, right? Quality of life is for rich people, or at least people with full health benefits. My suspicion—and it’s my personal suspicion, no one else’s—is that we will still be waiting months to receive vital service; we will still be competing with others for priority treatment; we will still struggle to get what we need and may resort to figuring it out ourselves. For many of us, it’s simply easier to get some sighted friend to walk us through a route until we figure it out. It’s slow, and not quite as safe, but many of us are capable of it.


So, I will probably be okay. I will probably not feel the lack when the system switches over (if it switches over—do remember that the government has made absolutely no promises). But what about the seniors who suffer from macular degeneration and need help learning how to perform basic tasks all over again at 85? What about the mother of a newly-blinded teenager who has no idea where to turn? What about the parents of that two-year-old they have just realized is blind? Who will support them?


This isn’t just about me; this is about everyone who has ever relied on the CNIB for anything at all. They have been such a strong and capable presence for so long that the government has, I think, gotten complacent. I fear for those who will need support in the coming years but will probably not get it. I fear for those who currently hold jobs at the CNIB who may be sent packing—special training and all—when the government decides, as it may, that any person at all can safely do O and M or Independent Living Skills instruction. I fear for the parents, teachers, and employers who may require support and guidance in making accommodations, and will have no one to ask. Maybe I’m wrong: maybe the government will swoop in, save the day, and give us even better service than the CNIB ever could. Maybe. But I’m scared. Really scared. I really do think we’re jumping out of the frying pan…and right into the fire.