Telling It Like It Is

Kudos to Dr. Brian Hennen for telling it like it is when it comes to life for persons with developmental disabilities in Nova Scotia.

I met Dr. Hennen and his colleagues for the first time the end of May when I took the Blue Jay to a transition clinic for young adults in Halifax. And I must say that I was very impressed with what they were/are doing - armed with the latest clinical guidelines for the care of adults with developmental disabilities, Dr. Hennen (a psychiatrist) and Dr. Clarke (a family doctor), joined by a supporting cast of a few other doctors and nurses offer a complete assessment of the young adult's physical and mental health, making appropriate recommendations to the family doctor for continuing care and, where necessary, referrals to other specialists.

Yeah, I was impressed - because really, how often do individuals with special needs (particularly adults) appear to be after-thoughts found on the side of the road, left to fend for themselves best as they can? Whether it be the health system, the criminal justice or elsewhere, this sadly appears more likely than not.

So I guess I shouldn't have been surprised to see Dr. Hennen's op ed in today's paper - an op ed which essentially sets out Nova Scotia's history (the good, the bad and the ugly) over the past five years in dealing with persons with developmental disabilities.

Offering both kudos and criticism where appropriate, Dr. Hennen notes the self-assessment undertaken with much fan-fare in 2008 by the Services for Persons with Disability (SPD) program, following which fewer than half of the resulting recommendations were fully implemented to the two reviews conducted by that same program following reports of abuse at a residential care centre in 2010 and the terrible treatment of an autistic young man in the Braemore Home in Sydney in 2011; both resulting in numerous recommendations, few of which were actually acted upon.

From research showing that half of the 156 adult Nova Scotians with developmental disabilities interviewed were unhappy with their living arrangements to the April 2011 report to the Standing Committee on Community Services concerning the inadequacy of residential options available to Nova Scotians with developmental disabilities (including the fact that one-third of individuals referred with developmental disability and psychiatric or behavioural challenges did not actually have mental illness, but were troubled by the inappropriate residential situations in which they had been placed). Kudos to the committee’s members who actually had the guts to admit their lack of awareness of the key issues.

From the Early Intensive Behavioural Intervention program for pre-school children with autism started in 2005 (for which demand far outstripped supply) that five years later finally opened its door to allow access for all such children to the highly successful Access to Community Education & Employment (ACEE) program, piloted in 2007, that offers a one-year program in life skills and vocational experiences to youth following the completion of high school, which was finally awarded secure funding in 2009.

Alas, Dr. Hennen fails to note the ACEE program (like so many) is only available to youth who reside in the Halifax Regional Municipality, leaving many, many who could benefit from it out in the cold (and most likely stuck in high school until they are 21 due to the lack of any other options).

Looking forward, Dr. Hennen notes that although that five years ago teaching programs for health professionals had little developmental disability content, the new undergraduate curriculum provides medical students with a minimum of 13 hours of such content over four years, with a further six hours of inter-professional learning about developmental disabilities planned. Family practice trainees will also have defined learning experiences in each of two years of training.

Leaving us exactly where, you ask?

I could do no better than offer Dr. Hennen's final words in reply.

As are other jurisdictions, Nova Scotia will be judged by how well it supports its citizens with developmental disabilities in their bid to live independently and contribute to our community. As care providers, teachers, advocates and government departments, we know we can do better. 

Cross-posted at A Primer on Special Needs and the Law

Still Hanuted by the Resdential School Scandal

This really saddens me.

Last month I shared the story of Jeremy Meawasige, the 16-year-old Native boy with severe and complex special needs who is at risk of being placed in institutional care, not because his family is saying they can no longer care for him but because the federal government refuses to provide the respite funding necessary for his mother, who is still recovering from a stroke, to care for him at home. 

This is something she has done without complaint all for all of Jeremy's life prior to her stroke (and from reading the news reports, it sounds like she had no help at all prior to her suffering a stroke) and is willing to continue to do, as her health allows her. 

It's extremely telling to me that Mom is not simply saying "I've had this stroke, now take care of my son for me here at home" (which, really, it's arguable she has every right to do).  No, now that she is able to get around somewhat with the help of a cane, she is asking for less support than that provided by her Band last year. The sense I get is that she is only looking for short-term assistance to tide her over for her recovery.  Not that, of course, she shouldn't be receiving a significant amount of help with Jeremy anyway, stroke or no stroke.

And yet now the plot thickens Jeremy's story turns even more tragic - not only is the solution seen as institutionalization but institutionalization outside of Nova Scotia.  Not just away from his mother and his home. Not just away from his culture. But in another Province, entirely. Not that we should be surprised, I suppose, given how dismally Nova Scotia has handled the issue of providing appropriate care for children with complex needs.

But, wait, this sad, sad story isn't over.

Now I read that there are more First Nations children in care at this moment than at the height of the residential school system. For any that don't know, the residential schools had a catastrophic impact on Natives and became Canada's national disgrace, for which Prime Minister Stephen Harper apologized in 2008.

Uncaring, Unprincipled, Unacceptable

That I wrote about this very issue two years ago is a very sad commentary:

That a funding kerfuffle, that the federal and provincial governments cannot agree on who, exactly, is responsible to provide the funding necessary for aboriginal children with special needs to stay at home, with their families, where they belong is sadly, perhaps, not surprising.

But that this bit of 'government infighting' as it is so colloquially called has resulted in families being told that they may be forced to give up their children because the First Nation can no longer pay for their care and federal and provincial governments can't agree on who should pay is beyond despicable.

And if it was unacceptable then, what is it now?

Two years ago, I questioned where the  Nova Scotia government stood when it comes to Jordan's Principle.  I guess now we have our answer.

Jeremy Meawasige loves music, sunny days at the beach and his mother.

But Jeremy has extensive physical and mental disabilities. And the failure to resolve a dispute between the Pictou Landing First Nation and the federal government over how his care is paid for may result in his institutionalization.

"It’ll be over my dead body," said Maurina Beadle of the possibility her 16-year-old son might be institutionalized.

Jeremy is diagnosed with autism, hydrocephalus, cerebral palsy and spinal curvature.

For 15 years, Beadle provided 24-hour care for her son. She spoon fed him pureed foods, carried him, prevented his self-destructive tendencies and changed his diapers.

That, in itself, by itself, is unacceptable in my mind. That a parent should single-handedly have to provide 24-hour care for their child for all those years anywhere in Canada is quite simply unacceptable. 

But as if that wasn't bad enough, last year Jeremy's mother had a stroke.  Fortunately, the Pictou Landing First Nation stepped up to the plate, providing three hours of home care every day.  Last year that cost the First Nation $82,000.

But now, even as the cost decreases due to his mother being out of a wheelchair and now able to walk with the assistance of a cane, she is being told that her son might have to be institutionalized because no level of government is willing to pick up the cost of a small amount of home care. Home care to which Jeremy would be more than entitled to were he to live off-reserve in this Province.

'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.

Headlines: Clarification

Just to clarify, what really irritates me about this is that nobody I am neither asking nor suggesting that any provincial government should be paying out for liberation therapy at the moment.

What we're talking about here is funding for clinical trials.

Clinical trials, people.

After all, isn't that what everyone has been talking about - you can't possibly expect us to provide funding for new treatments unless we know they're both safe and effective? Anecdotal evidence just doesn't cut it, right?

Okay, fair enough.

But.

Exactly how much research is going to occur if nobody funds it?

Then again, I am probably looking at this all wrong.

I mean what better way to slow the rising costs of health care budgets then to tell people that they must patiently wait for clinical trials? And then make sure those same trials never occur?

It's brilliant.

Headlines

Yesterday, the Province of Saskatchewan stepped forward as the first in Canada to fund clinical trials for the latest media darling in the treatment of MS, commonly known as "liberation therapy".

In a striking departure from his political counterparts across the country, Saskatchewan Premier Brad Wall says his government will finance clinical trials of liberation therapy, a contentious experimental procedure for multiple
sclerosis patients.

“There isn’t unanimity on the issue, I understand that,” Mr. Wall said on Tuesday. “But ... the province of Saskatchewan is willing to play a funding role.”

The move shunts Saskatchewan to the forefront of Canadian efforts to introduce a treatment that has researchers, politicians and the MS community divided over the roots of the mysterious nerve-wasting disease and the pace of Canadian medical research.

By the by, Premier Wall noted that Saskatchewan "has the highest rate of MS in the country", the issue being somewhat personal for him, apparently. No doubt because "there isn’t anybody who doesn’t have a family member or friend who is battling it”.

Did I ever mention that yours truly I your humble scribe hail from Saskatchewan?

And based on today's news reports, it looks rathter unfortunate that I hadn't stayed there.

Ontario will not follow Saskatchewan’s lead and fund clinical trials of a new operation that offers hope to people with multiple sclerosis, Premier Dalton McGuinty said Wednesday.

* * *

Manitoba Premier Greg Selinger said Wednesday he won’t commit to funding trials of the liberation treatment.

Selinger said the Manitoba government is working with other provinces to continue to find the best ways to treat MS, but he wouldn’t commit to funding clinical trials.

No word on Nova Scotia yet ... Wait!

Wow, looks like a good thing I wasn't prepared to hold my breath.

So much for that idea.

One note of dark humour though (we might as well laugh, right?).

While slamming Nova Scotia's NDP party for this decision, the Liberal Health Critic might just have stepped in it.

Liberal health critic Diana Whalen said Nova Scotia has the highest per-capita rate of multiple sclerosis in Canada, so it makes sense to conduct the research in the province.

So, they can't both be right, can they?

I mean I couldn't possibly be that unlucky ... consider that I already live in a country known for having one of the highest prevalence rates of multiple sclerosis in the world.

Then, to add insult to injury, did I really move from the province with the highest per capita rate of MS in Canada to the province with the highest per capita rate of MS in Canada?

Geez, if it wasn't for bad luck, I would have no luck at all ...

'Secure' Health Care

There is a good opinion piece in today's paper concerning the inappropriateness of using security guards as long-term attendants for patients suffering from various forms of dementia.

There is no question that many with Alzheimer's and various other issues are simply confused and wandering the halls of health care institutions. Others become violent.

And it's not like we can them "accountable" for that in some meaningful way - consider how much their world has changed, how confusing and scary that must be and then add in ever-changing caregivers, some always better than others. Consider that someday that could well be you and I.

Even without the issue of violence, the 'wanderers' can pose a huge problem. Both for their own safety (if they happen to wander off the ward) and to the mental health of other patients. We saw that happening during Mom's long hospital ordeal last year.

When Mom was hospitalized and confined to bed by her physical illness, an older gentleman in the room across the hall was a wanderer. He would come and stand in the doorway to Mom's room and talk to her. The problem was that both and he and Mom were subject to dementia. So while what he said probably wasn't making a whole lot of sense, it made even less sense to Mom's fogged mind.

When we returned from a weekend away, I found Mom terrified, refusing to eat or sleep. Between 'the man in the doorway', the nurses in and out of the room and the absence of her main support person (me), those two days became too much for her. It had all meshed into some confused horrifying story in her mind which made her sure that "they" were out to hurt her and her family.

Ironically, it turned out that 'the man in the doorway' was the father of a close friend, who I never even realized was in the hospital. Once we discovered that and told Mom about it, she was fine. Because, as she put it, she "knew the family".

But we also saw hospital rooms with security guards at the door day and night. It definitely made you wonder what was up.

First of all, it can't be an efficient use of resources.

Then there is the question of how much training these officers have. Does it prepare them to safely engage the "60-year-old stroke victim who throws furniture; the psychotic senior who violently strikes everyone, including their own family; or the frail grandmother who screams day and night"?

There's a situation ripe with potential for abuse. Although, in fairness, that's not just an issue for security guards.

And, as noted in the article, the "deterrent factor" offered by a uniformed presence might only serve to make thing worse, especially if paranoia is part of the patient’s illness. The omnipresent security guard, outside the door, only adds to the patient’s isolation, stigmatizes them and their family, and erodes what little dignity the disease has left them.

I can say it no better than the words of John D. Allen (a security professional for more than 20 years; four of those spent supervising the security teams assigned to three Nova Scotia hospitals):

A security officer should never be the primary care plan. It is a clear indication you are not coping.

. . .

Whether their condition is organic, caused by trauma or dementia, brain-injured Nova Scotians deserve the same level of dignity and care we all enjoy, and the need for properly trained health care professionals to deal with their special needs has been clear for some time.

Mahatma Gandhi said, "You can judge a society by how it treats its weakest members" - but the issue, as with everything in health care, is funding.

As we age and face the insidious prospect of our minds turning on us, specially trained orderlies and attendants will become a necessity if we hope to live in a dignified, caring environment.

Illogical Logic, Irrational Fear?

The story of the 13-year-old boy from Ontario who died on Monday is enough to scare any parent.

Almost enough to scare this parent into reconsidering the vaccination issue for her kids. After all, Kit Kat has mild asthma and the Blue Jay has a neuro-developmental disorder, which presumably puts them both at higher risk. Hell, even my own MS, some might argue, might put me in a higher risk category.

But here's my problem.

There's still everything Dr. Mercola has to say on the subject. And although this video interview is quite lengthy, it's worth a listen. He makes a lot of sense. And the interview will tell you a lot more than the text on the page, which makes some valid points on its own.

My two problems in particular have to do with the fact that although we are told repeatedly ad nauseum that flu activity is increasing in the United States, with most states reporting "widespread influenza activity", a three-month-long investigation by CBS News revealed some very different facts.

The CBS study found that H1N1 flu cases are NOT as prevalent as feared. A CBS article even states: "If you've been diagnosed "probable" or "presumed" 2009 H1N1 or "swine flu" in recent months, you may be surprised to know this: odds are you didn't have H1N1 flu. In fact, you probably didn't have flu at all."

Apparently in late July 2009 the CDC advised states to STOP testing for H1N1 flu, and they also stopped counting individual cases. Their rationale being that it was a waste of resources to test for H1N1 flu because it was already confirmed as an epidemic. Okay, fair enough.

But. Just like that virtually every person who visited their physician with flu-like symptoms since late July was assumed to have H1N1, with no testing necessary because, after all, there's an epidemic.

Before beginning their investigation, CBS News asked the CDC for state-by-state test results prior to their halting of testing and tracking. The CDC did not initially respond so CBS went to all 50 states directly, asking for their statistics on state lab-confirmed H1N1 prior to the halt of individual testing and counting in July.

What did they find? CBS reported:

"The results reveal a pattern that surprised a number of health care professionals we consulted. The vast majority of cases were negative for H1N1 as well as seasonal flu, despite the fact that many states were specifically testing patients deemed to be most likely to have H1N1 flu, based on symptoms and risk factors, such as travel to Mexico."

In other words, the diagnosis of swine flue is being repeatedly made NOT based on any lab tests. In fact, the diagnosis is made even when the test results prove otherwise.

And just to back up that little observation, last night I was watching the CTV news. Which was where I first heard the tragic (to say nothing of scary) story of Evan's death. But that piece was followed by another piece on the mass immunizations programs now beginning in which it was stated that you can self-diagnose the swine flu.

Get this. Supposedly, if you have fever and two or more of the following symptoms, you can diagnose yourself with swine flu. The additional symptoms included things like

• cough
• sore throat
• extreme fatigue
• headache

Well, excuse me, but based on those criteria, I must have had the swine flue at least 500 times in my life. In which case, I should have built up a whack of immunity and pretty well be swine flu proof by now, right?

Yeah. And that logic seems to make as much sense to me as the constant non-ending hype demanding that I must vaccinate myself and my family against this great pandemic.

By the by, I'm sick. Have been for two and a half weeks.

It sucks. It's very hard to get through the day without a two-hour nap. Sinuses, bad. The cough is intermittent. But I think a fair bit of it is coming from my nose draining, if you know what I mean. Fever? Maybe. I think so. Sometimes.

I have no doubt my doctor will tell me tomorrow that I have swine flu. But I won't buy it unless he can prove it to me with a blood test. Because, personally, I am 99.5% sure that I don't. That last 0.5% only because anything can happen.

Although if I do, I would actually be okay with that. Because I can get it over with and forget about it. And everyone else in the house has been exposed, too. So we won't have to worry about that any more, will we?

Ironic, Ain't It

Loyal reader and fearless commenter, Pogue, pointed out the irony inherent in this story in the comments section of an older post. And he's right, given what is going on in the US at the moment, it is rather amusing to see Canadian doctors being accused of wanting an American style structure.

Sticking with that note of irony, I must admit that that particular point hadn't really jumped out at me as being too noteworthy until Pogue mentioned it. Simply because it's really not new news. Not here in Canada anyway. This particular debate (accusations included) has been going on in Canadian political and medical circles for quite a while.

What did jump out for me from this article was this quote from Dr. Anne Doig, the new President of the Canadian Medical Association:

"It’s not about choosing between an American system or a Canadian system," said Doig. "The whole thing is about looking at what other people do."

"That’s called looking at the evidence, looking at how care is delivered and how care is paid for all around us (and) then saying ‘Well, OK, that’s good information. How do we make all of that work in the Canadian context? What do the Canadian people want?’"

Ironically enough (again), the reason that particular piece tripped my radar was the thought that this was exactly what I have (repeatedly) being trying to say to my American friends (in various formats) in the context of their current healthcare debate.

Namely, that I hope their country as a whole will wake up and see how very lucky they are at the moment in having the opportunity to look at various systems around the world. To see what works and what doesn't. And pull together the best of the best practices to create a uniquely new, uniquely American system that works for them.

Do I think that will actually happen? At this point?

Not so much. But this is one girl that just keeps dreaming.

And who knows? Maybe us Canucks will even learn a thing or two in the process. Now, wouldn't that be ironic!

"A taste for irony has kept more hearts from breaking
than a sense of humor, for it takes irony to appreciate
the joke which is on oneself".
~ Jessamyn West

Signs of Things to Come?

Even with our new NDP government officially sworn in here in Nova Scotia, I was finding it hard to get too excited. Perhaps I have become more cynical than even I had realized. Perhaps I was just politicked out.

And although I still wouldn't put myself in the category of "excited", there have been a couple of neat things a'happening recently.

For example, I was very pleasantly surprised to see this story concerning the provincial government's initiative to provide "eligible caregivers" in Nova Scotia with financial assistance to the tune of $400 per month to "recognize their important role and support their efforts to assist loved ones and friends". Unless and until one has been there, it's difficult to realize just how draining and demanding that role can be; physically, mentally and financially.

As I was to note that, in my absence, the Province has finally gotten around to launching the long-promised HealthLink 811 program which will enable Nova Scotians to be connected 24/7 via telephone with "an experinced registered nurse" who, we are assured, will be able to "assess the urgency of the caller's symptoms or health condition and advise them on the next steps, such as appropriate self-care, or to seek services from a family physician or another health-care provider, or to visit an emergency department". Meaning it looks like Nova Scotia has finally reached the cutting edge of healthcare given that similar programs have been available for quite a while in other provinces. It's about time, eh?

Last, but certainly not least, our newly-minted Nova Scotia government has lowered the amount of the application fee under the Freedom of Information and Protection of Privacy Act from $25 to $5. Many of the fees under the Act were dramatically increased when the Conservatives were in power and, despite their own recommendations to the contrary, they were never dropped. Hopefully this will at least somewhat lessen Nova Scotia's dubious distinction as having the highest fees fees in the nation for access to information requests and appeals.

But more importantly, hopefully all of this is but a sign of more good things to come. Hey, a girl can always dream, can't she?

Healthcare Debate or The War of Misinformation?

I must confess that I missed President Obama's televised "Questions for the President: Prescription for America", apparently a town hall-style event in which Obama answered questions on health care posed by audience members. I would have liked to have seen it, if for no other reason than to finally get a real sense of exactly what he is proposing and exactly what it is that has so many riled-up.

However, I am less much interested than what (if any) reforms Americans may ultimately make to their healthcare system than in defending all the misinformation which appears to proliferate like rabbits about the Canadian system.

Although I must admit that from over here it looks like the majority of Americans seem to neither really appreciate nor understand what an enviable position they are could be in at the moment - presented with an opportunity to take a close look at all the various systems around the world (none of which work perfectly, I would posit) and pick and choose what might work for them, in the process creating something entirely new, something entirely American. Pity that.

I found this video over at Take Five and although quite long, as Punky says it is definitely worth the time to watch. Although, personally, I think more for what is doesn't say than what it tries to say. Or should I say, what it purports to say.



Many, many moons ago I did a piece over at the Flight Deck (two pieces actually) about the Canadian healthcare system. Which, by the way, in heading over there to get the links, I reread, including all the comments on Part I. Might I suggest, if you have the time, you do the same? It really was a good discussion.

But I digress. What I want to specifically comment on is the End of Patients' Rights video, above.

On the surface, the video shows the many errors with both the Canadian and UK systems of healthcare. These two systems (and their stated flaws, accompanied by heartbreaking personal antidotes) are held up as examples of why and how a government/national healthcare could never work and should never be tolerated by US citizens.

We are accompanied on the tour by Mr.Rick Scott (who although not said to be an actual doctor, certainly comes across as the trusted medical professional) who helps to point out (in case we somehow can't see it for ourselves) the faults of nationalized healthcare. And why US healthcare is so much better.

I will give Mr. Scott this- he does actually (twice I believe) refer to reform of the American system (and thus, by implication, I suppose) the need for reform and states that this is " a great opportunity to improve healthcare in America".

And he points out what he sees as the four key components to such reform; namely, choice, competition, accountability and personal responsibility. None of which I, personally, have any problem.

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