'Good For What Ails Us'

Everybody seems to know exactly how to fix health care in this country.

There appears to be two camps when it comes to the issue of how to "fix" health care in this country - the first camp seeming to believe that the only thing to do is turn our entire health care system (or at least a large portion of it) over to the private sector while the second camp seem to think that the federal government just needs to keep turning more money earmarked for health care over to the provinces.  Ask either group and you will likely hear the same thing, their solution is just the ticket, the way to solve all our problems.

Which is why I was so smitten taken with this opinion piece in Wednesday's Chronicle Herald.  

Although I must confess that I do have to question the accuracy of some of Professor Ghose's assertions (particularly since he offers no references to back up his "facts") such as, for example, his statements that our health system is the second most expensive of the 28 OECD countries [when even the right wing Fraser Institute's data would place Canada in the number six position], that the cost of prescription drugs is increasing at a rate of 10% to 15% per year [whereas this 2008 report places the rate of increase in prescription drug costs between 1998 and 2007 at 5.1% and the Fraser Institute would have us believe that after adjusting for inflation, prices for existing patented medicines have actually decreased in real terms in 19 of the last 22 years] and that the price of generic drugs in Canada is among the highest in OECD countries and is still rising [although Professor Ghose notes Nova Scotia's and Ontario's moves to cap the cost of generic drugs, he fails to mention that both British Columbia and Saskatchewan have already gone that route].

But let's not quibble and instead take a look at Professor Ghose's thoughts on how to control what he sees as the three fastest-growing items in Canada's health care budget; namely, prescription drugs, the compensation of doctors and CEOs and the funding of hospitals.

With regard to prescription drugs, Ghose's solution is a universal-access national pharmacare program that would cover only inexpensive but potent generic drugs, secure the best prices by bulk purchasing, stop payback practices that jack up prices, curtail inappropriate and over-prescription and monitor drug activity to weed out ineffective and harmful drugs.

Professor Ghose would also eliminate our standard "fee for service" method of compensating doctors, which tends to encourage seeing more patients by spending less time with them (I think many of us can attest to the truth of that statement). Instead he proposes a rationalized salary system based on performance and productivity to cut cost and improve care. He also suggests linking hospital CEO compensation to performance criteria (what a concept!), with changes in compensation requiring justification and online posting (public accountability ... say it isn't so!).

Last, but certainly not least, Professor Ghose notes the cost of delivering primary health care via ERs and tertiary care hospitals and proposes that instead it be delivered through primary care centres, working 24/7.  Such centres should also be facilities for preventative medicine, provide immunizations and actively promote health and healthy lifestyles and would be staffed by nurses and paramedics outside of office hours. [Although he doesn't specifically state it, I assume a doctor would be on call during these times.] 

His plan would also change how hospitals are funded - changing the current lump-sum funding to a method that would take into account the number of patients treated, treatment outcomes and compliance with benchmarks for improving care. Tertiary care hospitals would deliver centralized and disease-based care following the comprehensive cancer care model. 

I don't know about you but, in general, I like the way this man thinks.

As just one example, Canada has desperately needed a national pharmacare system for a very long time.  And for just how long have they been promising us that?

And the rest of it? Sounds good to me, too. 

I'm with the good doctors on this one -

"The idea that we would just put more money into the same health-care system that we have now, without stopping for a minute to consider how we could or should improve it, and what kind of big changes we could make with that money, I think is a missed opportunity," he said.

. . .

A health-care agency to provide strong oversight and long-term planning, well beyond the current four-year election cycle, would go a long way to strengthen the administration of the system, he said.

Happy Easter Everyone

All right.  I've been giving this a lot of thought.  

You know how some people appear to be offended by Christmas meaning we're not allowed to celebrate or wish others a Merry Christmas anymore?  How we had to start calling it something else?

So I was thinking, what if some people are offended by Easter too?

I mean, really.  Think about it. I don't know about you but I really don't want to hurt anybody's feelings. Because that just wouldn't be right.

So here's the plan.

We will no longer call the Easter Bunny the Easter Bunny. 

That might just be offensive to some.  Nope, from hereinafter he shall be known as the Furry Long Floppy-Eeared Burrowing Rodent Who Appears Once a Year Bearing Chocolate Treats.

And whatever you do, please don't with anyone Happy Easter!

It's Happy Totally Non-Religious Colourful Candy  Festival Holiday.

To you and yours.

*  Borrowed (and shamelessly mutilated) from the Magic 94.9 Morning Show.

Too Close To Home

Are you a reader?  I am.

And every once in a while (okay, in a very long while) a book will jump up and grab me by the throat.  Or, perhaps more accurately, the gut. 

I read a lot, good books, so-so books, really good books.   But those rare ones that really grab me - they hang on, they hurt and they tend not to want to let go.

It's been awhile since I've experienced that, though. And, the last time it happened, I ended up in The Deep End.

Having just come off my second P.T. Deuterman book (damm, that man can write!), I thought I might be in the mood for something a little different.  I wasn't quite sure what though. 

I am really into audiobooks as of late and if I am going to spend a credit on a book, I tend to make sure it's a lengthy one.  None of those abridged versions for me ... who the hell even decides what stays in and what goes out?

So I'm not sure why I purchased Still Alice.  Not sure exactly when either.  But the strange thing is it's a short book.  Only seven hours.  Ever hear of small but mighty?

Yeah, about that.

I identified with this book on so many levels and alternated between laughing and crying my way through it - yes, even once, at the same time.  Then again, that is one of my sayings - Some say that if you can either laugh or cry, you might as well laugh.  Me?  I prefer to do both at once.

Alice just turned 50.  For 25 years she has been a psychology professor at Harvard University. [Park the car in Harvard yard - sorry, side joke for any lost Bostonians in our midst.] 

Happily married to a biology prof at Harvard.  Three young adult children - all successful professionals ... okay, with the exception of her youngest who has deserted the life of academia to take up an acting career. But pretty much a perfect life.

Near the beginning of the story, Alice is diagnosed with Early Onset Alzheimer's Disease.  This is the story of how Alice (and her family) comes to terms (or not) with that diagnosis and the progression of the disease.  Because progress it does.  It's heartbreaking in many places.   And equally humorous in others.

But I found myself identifying with the book Alice on two different levels.  It's been almost 2.5 years since my Mom passed away.  The last few years of her life were marred with dementia along with her other medical issues.  It wasn't Alzheimer's but, really, it was close enough. 

Which is why, in so many places, the story grabbed hold of my stomach and twisted.  Hard.  Although not told in the first person, the book paints the story from Alice's point of view.  I was familiar enough with the care giving other side - was this really what it was like from Mom's eyes?

Surprisingly (or not), I also found myself identifying with the story in other way.  Being a Harvard psychology professor, specializing in the cognition of linguistics, and a respected highly sought-after guest lecturer around the world, we might presume that Alice is just a wee bit on the intelligent side.  A hell of a lot smarter than me, that's for sure.  And yet I could identify with being proud and confident of that academic side, of defining yourself, at least somewhat, by your work.  You can imagine how devestating it was for Alice.

And although I am not too worried about dementia, personally, early onset or otherwise (although the book did make me ponder the fact that both my mother and grandmother experienced dementia to some degree before their deaths), I can identify with the concept of a hidden disability. A completely uncontrollable,  unpredictable enemy that can throw your life into a tailspin without a moment's notice.  One that (fortunately only very occasionally for me) can rob you of your ability to find the words you need and/or the ability to process thoughts at the level and speed you're accustomed to.  

MS isn't Alzheimer's, thank God. 

And yet, as I have recently discoverd, it can affect a person cognitively, as well as phsyically.  Luckily for me, on those rare occasions when it has, it would seem that others don't notice.  But I certainly do. 

Not only do I find it frustrating and irritating, but it's also very scary.  For the simple reason that, I suppose much like Alice, I tend to define myself, at least in part, by my 'book smarts'.  And if I'm trying to work my way through a research problem or, worse yet, talk to a client and my mind can't clear out the fuzz or find the words needed to express what I need to say ... yeah, let's just say it's not so good.

There's about 45 minutes left in my audiobook.  Which means, I suppose, that there are about 45 mintues left in Alice's life.  Alzheimer's being a progressive, debilitating, ultimately fatal disease. 

I don't want to read hear any more.  But I know the minute I walk away from this computer, I will finish the book.  I have to.  It's one of the best, most awful books I've read in a long time.

Better Late Purple Than Never

Some might say Purple Day 2011 has already faded into the sands of time. I, however, beg to differ.  After all, as long  the EANS will be the beneficiary of the upcoming Lions Breakfast this Saturday, courtesy of Purple Day, I say it's still fair game.  Which is a good thing, considering I haven't had an opportunity to do any Purple posting until now.

So. Purple Day. 2011.

It having been a bit of a crazy few months in the Free Falling world, we didn't manage to paint our little corner of the world quite as purple as we did last year.  But we still made a respectable showing, I believe.

Horton High School once again took up the cause, with the Blue Jay (this year, with the help of the Kit Kat)  and her classmates again selling purple cupcakes, handing out information and taking donations.  She also had the chance to make a school-wide announcement and explain the purpose of Purple Day before the big day, which was nice.  And it appeared that the whole school pretty much really got into the spirit, with Purple Day posters lining the walls and a sizable portion of the student body decked out in their finest purple gear.

We hit the local Mall again this year, actually, we spent all day Saturday as a family affair at the Mall, where we once again sold bracelets and purple cupcakes, handed out information, pins and ribbons and took donations.  Mucho donations.

Well mucho, considering I have never approached our Mall adventures with the intent of them being fundraisers; their primary purpose is to educate people and get a conversation going.  So it was very gratifying to see now only how many donations we got (and how many $20 donations, at that!) but also how many more people were aware of Purple Day this year than last.  The word is clearly getting out there.

Our family has struggled through a long and often painful journey with epilepsy.  Not as long, not as painful as that some families have and will continue to go through but certainly longer and more heartbreaking than any child or anyone who loves a child should have to face.  And no matter what the future brings for the Blue Jay, I will always be eternally grateful for the past several years of relative peace.  The Blue Jay's life is still not easy (and likely never will be) but things are so much easier for her (and, thus, all of us) when the ugly seizure monsters are held at bay.

And yet, really, I think it's the very fact that the Blue Jay's seizures are so well-controlled at the moment that motivates me to be so involved with Purple Day.  True enough, were it otherwise, I would no doubt be equally but differently motivated to take up the cause, both on her behalf and for so many others.  But for now, it's the fact that we have it so much better than so many others, that we have found, even if turns out to be only temporarily, our magic panacea for her seizures that makes me appreciate how lucky we are and how wrong it is that others out there are still in the position we once were.

I suppose we will always be a Purple family.  Actually, perhaps more accurately, I truly hope that we will always be a Purple family.   There are many, many "good causes" in the world and no one person can take them all on.  But person by person, family by family, we all can make that extra effort to support and promote at least one. 

Epilepsy has touched our family deeply and will always leave a scar.  But I believe it has also left us with something else, something positive and good and pure - the requisite empathy that moves compels us to step up and contribute our small piece to the far larger effort needed to help others who continue to fight a daily battle, not only with this often devestating neurlogical disorder, but with the equally, if not sometimes more damaging, effects of public misconception and the resulting social stigma.

So what cause is personal and near and dear to your heart?  And, more importantly, what are you doing to help make life better for those who live it?

MIssing You

UPDATE:  We better add former employers launching nuisance law suits to that list below. ~Walks away, shaking head and muttering incoherently ...

I have always really enjoyed reading other people's perspectives on various political and current events. Almost as much as I enjoy sharing my own.

Alas, I haven't been doing much of either lately ... seeing as how I'm lucky to catch up on my daily blog reading once or twice a week and my last post on anything vaguely political being back in October, preceded by one lonely post in September. 

In fact, it looks like I haven't regularly weighed in on anything really substantive since July ... geez, it's hard to believe I could actually be quiet for that long! [Those who know simply nod their heads in agreement...]

And so it is that I miss that discourse.

But it's exactly because I enjoy it and miss it so much that I hold out hope ... lonely forlorn hope ... that one day soon I will make my triumphant return to the land of the blog. 

I will not give up.

I will prevail over government bureaucracies that deny much-needed benefits; former employers who require a serious bitch-slapping; moody, irritable husbands, an incredibly demanding young adult child who desperately needs help from somewhere (anywhere) in learning to regulate her emotions and behaviour and navigate the social world; the energy required to get a new business seriously rolling ... and all the other daily struggles joys of life.

In the words of the immortal Schwarzenegger, I'll. Be. Back.

Eventually.

The Art of the Possible

Coming Together To Create Change - A Values, Vision and Action Workshop - the name of the Conference the Kit Kat and I attended this past weekend at the Oak Island Inn.

Co-hosted by both the CACL and the NSACL, it was Part One in a series designed to encourage family leadership in the continuing (some might say never-ending) struggle to obtain for persons with disabilities those things that you and I take for granted - the opportunity to go to school and be educated with our peers, to hold a job (true enough, there may be many days when we would rather not work but have you ever considered life on the other side of the coin?), to choose where and with whom we will live ... to live inclusively in society.

And it struck me yesterday evening (as I suffered through the migraine from Hell) that for me, personally, we could just as easily have renamed yesterday afternoon "The Art of the Possible".

We watched three separate video clips of "success stories" from across the country - in the first, a severely challenged young woman, Amber, moved from a group home into the home a former paid caregiver who had now become a real friend. This truly was a win-win situation for Amber as she now lived as a young adult in a room-mate situation as opposed to as a child in her parent's home or in an instiution, developed a second extended family who embraced her as one of their own, was clearly happy and well-cared for and once again lived nearby her biological family.

In the second clip, we met a young man, Chris, with a keen interest in all modes of public transportation - planes, boats or trains (especially trains); if it moved, he wanted to be on it. After making the move from a group home to his own rented house for a time, he was eventually able to purchase his own home with the help and guidance of his "microboard" - a team of family, friends and service providers who worked together to secure his future. With three paid caregivers, all close in age to Chris, who worked 48-hour shifts (which gave him much more consistency and flexibility in setting his own schedule than the standard three eight-hour shifts per day), he was able to be active and engaged in his community.  And, of course, ride a lot of trains.

And although I had trouble fitting my head around the third clip, it was, perhaps, the most empowering for me, personally. Would you believe that for the past 20 years, students with intellectual disabilities have been attending University in Alberta? Not just community college, but University? Attending and  actively participating in academic classes and intramural sports teams and "graduating" with a certificate right alongside their non-disabled peers?

Yes, I am the first to confess that I have a fair bit of difficulty seeing how that University experience could actually work for these students, but the three clips were certainly an exercise in the art of the possible for me, personally.

You see, for the past few years, we have had this semi-vague, semi-formed plan which involves the Blue Jay attending the NSCC after she finishes high school. The provincial community college system has become much more disability-friendly over the past several years, allowing students with special needs to access the accommodations necessary for them to obtain diplomas in their chosen area of study or, if they are unable to meet all the course outcomes, to participate in those portions of the curriculum that they are able and graduate with a list of employment skills. Since the Blue Jay has a strong interest in cooking, this seemed like a plausible possibility for her future.

But a few months ago, in a conversation with her resource teachers, in which I mentioned this plan (not for the first time) in passing, I was clearly and firmly told that the NSCC was not for the Blue Jay. That those programs were for persons who had an aptitude in a particular area and wanted to develop some more skills. That this was not the Blue Jay.  As I was literally walking out of the room when the comment was made, I simply observed that we would have to agree to disagree on that one. And then exited. Stage left.

And although the comment stunned me somewhat at the time, I really didn't think it had had that much effect on my thinking. But at the end of the day yesterday, I realized that ever since that day, those remarks had been subtly working away at a subconscious level and were starting to make me doubt the appropriateness of our plan. A plan which, by the way, the Blue Jay is fully behind and excited about.

Let's just say that is not so much so anymore. If students who are mentally challenged are successfully attending university with their more typical peers (even if that isn't an option I can picture for the Blue Jay), who are these teachers (or anyone else for that matter) to say that community college is not an option for the Blue Jay, to categorically state that she can not go there?

No, were I to hear those words again, I do believe my response would be much more along the lines of Well, too bad what you think. She has the funding available and if she chooses to go, she will go.

The art of the possible, indeed.

And yet, lest I forget, I witnessed something else equally inspiring and thought-provoking this weekend. Not only did the Kit Kat devote her birthday weekend to attending this Conference (where she was by far the youngest and the only non-parent present), she was actually the moving force in getting both of us there, convincing me that this was an event we should attend.

Yup, I was very proud to stand up today (on her 15th birthday) and acknowledge my daughter in front of our fellow conference participants. She's grown into quite the young lady.  On some days, anyway.

Ain't It The Truth ...

Found this at the bottom of today's page, courtesy of Marshall McLuhan, via Quote of the Day:

I don't necessarily agree with everything I say.

I'm thinking he wrote said that with me in mind. 

Must have.

Did You Have Something To Say?

No? I didn't, like, think so.

Me, neither, ya know?

Threes

• First, it was my health.

• Then, HWWLNTBN lost his job of 15 years.

• And yesterday, yesterday it was smash, crash, bang - my 3-month old* brand new car and I were involved in a car accident.

So does that mean we're done now?

*Incidentally my last accident, 5.5 years ago also involved my then 3-month old brand new vehicle. 
So I'm thinking I now know how not to have any more motor vehicle accidents. 
I simply will not purchase any more new vehicles.
That was easy.



I (Still) Believe

I spent a couple of hours Sunday evening watching the CTV Olympic Winter Games 2010 Anniversary special.  It was an interesting experience.

I didn't write a whole lot about the Olympics last year, but I did watch a fair bit (which is unusual for me) and I was very ... is 'moved' the right word? Perhaps 'inspired'? I'm not quite sure.  But I, like most Canadians, was most definitely something.

And it was amazing how watching the anniversary special was enough to take me right back there.  Right back to those moments, when Alexandre Bilodeau won Canada's first gold at home and when Joannie Rochette skated to her own personal vicotry (and a bronze medal) just days after her mother's death.  And, of course, perhaps the greatest moment of all, Crosbie's gold medal goal at the very end.

Sandwiched in between, of course, was the gold medal of the Canadian women's hockey team and Virtue and Moir's gold in the ice dance competition.  And who could forget Jon Montgomery's triumphant walk through thre streets ofWhistler, complete with a pitcher of beer?

But tell me, how did I miss the story of Mellisa Hollingsworth tearfully apologizing to the nation for not winning a medal in skeleton? I do remember hearing the story in passing at the time but I sadly confess that it didn't stick.  I know, no apology necessary, eh?

Know what else I realized I missed?

Hearing or seeing much coverage of the Paralympic Games which were held immediately after the Olympics last year.  I remember noticiing at the time that I wasn't hearing much on those Games and then, last night, when they showed some of the hightlights from the Paralympics, I realized how much we all  had missed.

So if you're thinking that perhaps, just perhaps, my media choice for the eveining has swept me back in time to a year ago this month, you would be absolutely correct.  Dead right on.

And it's in that spirit that I offer you my one of my all-time favourite songs, "I Believe" as sung by Nikki Yanofsky.

Unfortunately I can't share with you the version of that song I really want to.  At least, not directly on this blog.  I'm afraid you will have to go here to view that.  [Ed.. They disabled the embedding function.  The bastards.]

One other thing that was really rather neat about the anniversary special was the chance to catch up with some of those athletes now, a year later in their lives.  But one person I noticed they didn't profile was Nikki Yanofsky and I have to wonder why not.  Although not an athlete, she definitely played a large part in making the 2010 Olympics what it was for Canadians.

Who Are We To Define DisAbility?

H/T to Ashley's Mom at Pipecleaner Dreams

Peace of Mind

I threw a great quote up on the side bar today.

Nothing is more conducive to peace of mind than not having any opinions at all.

If Mr. Lichtenberg is, indeed, correct, I would appear to be totally at peace lately. 

If only ...