CIDP and Me - The System Is Down

This post is not about my own health but a little rant about the state of health care and some of the obvious gaps in the "universal" coverage that we receive here. Now, it should come as no surprise to anyone that the state of health care in this province is "a right mess". There are family doctor shortages, specialist shortages, bed shortages, mismanagement, ineffective bureaucracies, etc. I'm not really going to get into all that. It's easy enough to find information by doing a simple Google search or reading the news. I can say, however, that these problems are not hiding beneath the surface. It is immediately evident if you spend anywhere near the amount of time that I do in the hospital that the system is in shambles.

That said, I have managed to secure myself an amazing healthcare team. I'm not going to say I'm lucky because luck should have absolutely nothing to do with it. But I am very grateful that I can receive all of the care that I need here without having to travel to Halifax or wait months and months and months for an appointment. Unfortunately there are many people who are not in my situation. Of course, I've been in the system for some time now - I did start off on a lot of waiting lists for tests, scans, physiotherapy and occupational therapy. 

Okay, that's not really what I wanted to talk about, but there it is. What I am going to rant about at length is the cost (often prohibitive) of assistive devices and technologies. There's been a lot in the news and on current event shows lately about the various technologies and devices available to help those with disabilities. It seems that the passing of Stephen Hawking has spurred this interest. Certainly Stephen Hawking had access to amazing technology and supports. Unfortunately, that is not the reality for most people. Now I'm not comparing myself Stephen Hawking, as clearly my condition is not nearly so severe. But even in my situation I have acquired many assistive devices and technologies over the years and these are rarely covered either by the provincial health care system or by my private insurance. I'm not sure if people realize how little is actually covered and how much of a financial burden a disabling condition can be.

Note: I am NOT looking for financial aid - please don't take this post as a veiled plea for money.

This is one of the reasons why you see so many Go Fund Me campaigns in Canada, the land of universal healthcare. I keep seeing a particular post on my Facebook news feed about a local woman with a disabled child looking for funds to buy a wheelchair accessible van. These vans cost approximately $50,000 and there is little assistance available to help people who require them. It's sad. It's not like these are vanity items or "toys". They are required to allow people to have more quality of life, the kind of quality of life that we as Canadians assume we all have (I realize of course this is not the case in many other demographics as well but that is beyond the scope of this blog). It breaks my heart and makes me so angry every time I see these pleas. As if these people don't have enough to deal with! 

In my own case, I have pretty good coverage. However, I have had to pay out-of-pocket for a lot of things. I'll list a few of them here: the wheelchair ramp outside my house, the bench I sit on to shower, the bar next to the toilet so that I can sit and stand without falling, the bar attached to the side of my bed so that I can stand up from the bed safely, my fun new voice recognition software that I'm using to dictate this post, the hand controls in my car that I put in so that I could drive and have a little bit more independence. None of these items are what I would consider to be frivolous. Each of them allows me to function relatively independently and participate a little more normally in life. Why aren't they covered? Who knows. When we asked our insurance provider about this we were told that they covered the "little things" so that we could take care of the “big things". It's interesting that hand rails and shower benches are considered "big things". Sure, insurance covered my wheelchair walker, cane, medications, and AFOs, and of course I am grateful for that. But the implication that covering these items means that people will have enough money for ramps and accessible vehicles is a little crazy. 

I'm fortunate that I have private insurance, as many people do not. And yes, most of the things that are not covered are tax-deductible, which works for me. However, in order to benefit from tax-deductions you need to pay taxes to begin with. This is not a great help for many people with disabilities or their families. And while there are opportunities for funding and support available to those with lower incomes, they certainly do not go far enough.

So while it's fun to look at all the neat gadgets, mobility aids, and technologies and to marvel at how far we've come in terms of supporting people with disabilities, we must also keep in mind that in many cases these are out of reach. In a society that values universal healthcare, equal opportunities and equal rights we are not doing a very good job when it comes to supporting those with disabilities. It's a very small portion of the population that we're talking about here -- should we really be trying to make money off of of them? Isn't it better to make the tools and supports more widely available so that more people can engage fully in society? Is it not ultimately a bigger drain on the system if people do not have the tools to live safely and independently?

So there's my rant such as it is. This may be a bit more of a political post than you are used to (and I'm fully aware that it has absolutely nothing to do with my progress or CIDP) but it's been on my mind and so I wanted to share. Not to mention, I just got this dictation software a couple of weeks ago and really wanted to try it out with a blog post!

That's all for now:)