With concerns growing daily that the aging baby boomers are going to overwhelm Canada’s health care system, is now a good time to be doing away with an important planning tool like the PALS?  To me common sense would say no but then I am working from the assumption that common sense exists within government.  I see too many examples that indicate the contrary within all levels of government.

How do you effectively plan for a new direction in health care if you don’t have a sampling of the stats required to begin building?  In a country where we can see our health care system crumbling, the importance of projections cannot be easily rejected.  PALS is a major tool (not the only tool) for this type of planning and should not be subject to discontinuation. 

How can you know how to plan for educational inclusion if you have no idea what kind and types of disability are in the future?  The statistics collected by PALS can make a major contribution to schools and planning for inclusion.

My experience with the previous “HALS” indicated to me that the non-profit sector makes more use of these stats than the originators, the Federal Government.  When I worked in government and I was always amazed at the huge amounts of information sitting around and nobody bothering to really look at it.  Valuable information that, in little pockets, didn’t do much but once gathered altogether contributed well to progressive planning.  Without the proper information how do you build a sustainable system?         

Our current federal government tends to want to kill the messenger rather than listen to the message.  It like a revolving door around any commission heads offices these days in Ottawa.  It may seem like an easier out to get rid of the voice and ignore the noise but this strategy will catch up with us.  This strikes me as another situation where the answer hurts and in this case the answers are in the PALS information. 

To me this is just another example of the short sightedness so many politicians now show.

The latest issue to raise my ire is regarding the Tamil refugees.  Vic Toews, the Federal Minister for Public Safety, was quick off the draw to begin spouting the words terrorists and human smugglers .  I think Mr. Toews needs to brush up on some facts and put them in perspective especially considering the province he is from. 

I have no doubt that there are holes in our current immigration system.  That is one of the difficulties for Canada.  We have a long history of being an open door country that welcomes diversity and multiculturalism so where do we draw the line.  I can appreciate the difficulties for government on this issue and have no desire to get into a discussion on immigration in this post.  I do have a desire to point out the use of negative rhetoric our government of the day uses so frequently.

I am not trying to make an argument here for these boat loads of people who are showing up on our shores but watch the rhetoric Mr. Toews.  The Tamil Tigers are seen by many as a separatist organization formerly based in northern Sri Lanka seeking to establish an independent state in the north and east of Sri Lanka.  Their methods are questionable at best but they stayed within their borders.  It is not like they are strapping on bombs and going to other countries to create havoc and destruction.      

This is not unlike Canada’s own issue in the late 60’s and early 70’s with the FLQ.  They too were fighting for separation.  I recall people being fearful of putting mail in the drop box due to mailbox bombs being used by the FLQ.  They were reported to be responsible for over 160 violent incidences and the death of eight people including Pierre Laporte, the Quebec Labour Minister.  This all came to a head when the Prime Minister of the day, Pierre Trudeau, declared martial law.  Canada has had their share of “terrorists”.  The word terrorists it is one of those words that instantly create fear in the average citizens’ mind, particularly since 9/11.

I am by no means attempting to take a side on the Tamil issue.  I do take exception to politicians or any other high profile individuals that have access to press coverage using language to instill fear and sway public opinion.  I am personally very tired of this “control by fear” that has become so prevalent following 9/11.  Of course, it is not a new approach.  Anyone who was around in the 50’s remembers jumping under your school desk as part of the atomic bomb safety exercise.  Like hiding under your school desk would actually serve a safety purpose.  What it did do was to maintain fear in the citizenry of the day.

I would suggest that before Mr. Toews starts’ throwing around words like terrorists when it comes to a boat of fleeing refugees he thinks back on the history of his own province.  Louis David Riel, considered by many as the founder of Manitoba, was elected three times to the House of Commons and was eventually hung as a traitor fighting for the rights of the Métis.  History has a strange way of rewriting itself every now and then but as long as we have politicians using terminology designed to instill fear we will constantly be rewriting.

Just one man’s opinion.

When I was 13 my doctor recommended sterilization to my parents for me .  That was not uncommon in the 60’s and if you were a behavioural problems it was even a bigger recommendation.  And I did have behavioural issues but that was because I was more of a juvenile delinquent then a cognitively impaired individual.  I carried a hell of a chip on my shoulder because of my crutches but the majority of the medical profession saw it as a behavioural issue.  For some reason persons with disabilities aren’t expected to experience normal developmental behaviours.  And this little belief still exists.

So much of our health care system is so focused on the disability that they ignore normal development.  If you act out, as many teenagers do, but you have a disability then it’s your condition that is the problem.  Well I hate to disappoint the medical profession but many kids with disabilities experience some of the same issues that any other kid does.  The system is too quick to rule out the “normal teenage development issues”.   

Puberty, for example, manifests itself in a person with a disability the same as it does for non-disabled kids.  With all of the focus on the disability we wind up raising these children to be disabled.  We spend too much time telling them what they can’t do rather than focusing on ways to maximize what they can do.  And I believe if a person is dedicated to what they want to do then they will find a way to do it.  But if all they hear after they are diagnosis is what they can’t do then that is what they begin to believe. 

Fortunately my parents didn’t have time to treat me as a disabled person.  I had five other siblings so my parents were pretty busy keeping life moving.  My parents treated all of us equal and had the same expectations for all of us.  That included me.  Even on crutches my parents’ expectations of me were no different than my siblings.  I didn’t realize it at the time but it has certainly made a difference in my later life.  My rebellious years probably lasted a little longer for me than normal but what the hell, I believed I would be dead by 30 so I was out to maximize my experiences.  Eventually I outgrew that and began to take life a little more seriously.

Once I settled down I got into the swing of real life which involved marriage, etc.  I don’t think anything made my mother happier than when my son was born.  My son became the apple of my mothers eye.  After talking to my mother tonight, now age 83, all she could go on about was me being a grandfather and got into how glad she was that she didn’t agree to the sterilization.  She will tell you to this day that her choice was not based on social conscience but rooted in her catholic upbringing.  I don’t often expound religion but that is one good thing that came out of the church.

Now I am a proud grandpa and have lived twice as long as I had ever anticipated as a teenager.  Life can be so strange but for me in a good way.  Here’s to my grandson, Taylor Alexander.  May he have a long and healthy life.

All of my work is with ESL families.  I put a lot of time into educating families on their child’s disability and the opportunities their child could have with the right therapies.  Quite often this goes against generations of cultural beliefs associated with disabilities.  In many cultures a child born with a disability is seen as a curse or embarrassment.  This does not take away from the parents love for that child but it can certainly stigmatize the family in their ethnic community.  Many new Canadians keep this secret until their child reaches an age where they have to interact with society.  And for many that is when the child enters the education system.  This usually results in 3 or 4 years of lost therapy time.

By the time I become involved with many of these families we are already playing catch up.  The hardest part of the catch is teaching the family how to advocate for their child.  This is often oppositional to their cultural beliefs.  I have a lot of resources to help educate them about the disability but few resources to teach them about the difference in cultures.  Many come from cultures where you do not question persons they perceive as authority figures.  That they do not question is very counterproductive to advocacy.

Preparing them with knowledge of their child’s disability is easy.  Working them past their cultural beliefs is quite another issue.  The pressures I take for granted (presenting their child’s needs in a fashion that meets the criteria set up by the bureaucracy, fighting for service, handling the various appeal processes, handling adversity, etc) is something that is often culturally oppositional to their beliefs.  This can often result in further family dysfunction.  It can be a very difficult on families.

So I ask myself is ignorance bliss?  Is it more beneficial to leave them with their cultural beliefs intact and not increase the pressures they are already dealing with as new Canadians?  Of late I have asked myself that question a lot.  Is it really fair to push a family into what I believe is an adversarial bureaucracy that has become more about bonus payments for saving money rather than investing in one of the most vulnerable segments of our society.  Our children!

When people ask me why I continue to do this if it so aggravating without a second thought I state because I believe in these children.  I have to keep reminding myself about that statement because it is the child and not the family I fight for.  There is a fine distinction there.  Family buy in is of the utmost importance but the cost of that buy in is something many of these families are not prepared for culturally.  I need to have the faith that a family will tell me to back off if it is too stressful for them.

So is ignorance bliss?

In reality an effective advocate also needs to understand what other policies and regulations that can have an impact on what they are trying to achieve for the person they are working with.  Because I work primarily with the ESL community it is imperative that I also understand human rights and immigration regulations.  I have yet to discover any regulations that stand alone and are not impacted by other regulations.  The government department I deal with most of the time would prefer to work in a silo environment while ignoring other legislation.  Legislation the average Canadian, let alone a new Canadian, understands.  You need to understand the linkages.

For the past year I have worked hard to get the provincial body responsible for children with disabilities to understand this.  It has taken me that long to realize the Alberta government doesn’t really understand “reasonable accommodation” or the term systemic barrier.  When a body refuses to acknowledge systemic barriers it is impossible for them to recognize the need for accommodation.  That is the position I find myself in with the Alberta provincial government.  The current culture in our government is one of control hidden behind statements of accountability.

I find it fascinating that we can have a federals government stating the mandatory long census form is an invasion of family privacy (a move I don’t agree with) while a provincial government can throw all the paper work they want at an ESL family.  Of course all of this paperwork is in English and you almost need a business degree to stay on top of the multitude of forms required.  Many of these forms are actually break downs of other forms (requiring a much higher level of detail).  This is intrusive and is more micro managing than accountability.

None of the families I am involved with have any idea what a Revenue Canada ruling is, what employer costs are, why they need a Revenue Canada Employer ID or what it means to make Revenue Canada submissions or why they need to send out T4’s let alone a T4 summary.  These are all systemic barriers.

Those are the kind of things a good advocate knows or researches.  Those are not the kind of things a peer support person would necessarily know.  All of the peer support people I have dealt with mean well but come from a perspective of what their child received.  This creates a competitive environment and disability should not be competitive.  Whose child is more disabled is irrelevant.  Each child is very individual and some will benefit more from some therapies than others.  This is something that many peer support people miss particularly within the ESL community.

If you are going to be an advocate then know what your role is.  A good advocate knows when to say “that just isn’t realistic”.  Being an effective advocate also involves educating your client regarding their child’s condition and the system they have to deal with.  This is not only one system as many of them are dealing with many systems.  Not only do they have to deal with the government program that assists in funding services for their children, they are also dealing with the health care system, the education system and often their own community.  Too many ESL communities still see a disabled child as an embarrassment so they receive very little support from their own community.

These are all things an effective advocate needs to be aware of and I have still simplified it.

We have politicians telling us we have to tighten our belts and people like our federal Finance Minister Flaherty telling us we have to work harder to save for our retirement.  Just this week the Alberta Ministry of Seniors and Community Supports announced another $6 – 8 million dollar cut (following a $10 million cut last year) from frontline services.  The Calgary Board of Education, the Edmonton Board of Education, the health regions and it can go on, are all shaving their budgets while we pay for it and our services are eroded.

This wouldn’t bother me if the governments led by example.  But leading by example is not shown when they spend $200 million to build a hospital they can afford to staff.  That is not good fiscal management.  Spending $15 to $20 thousand on an appeal process to keep a family from accessing $5000 worth of Speech Language Therapy for their child is not good fiscal management. 

And then the government pays “performance” bonuses to bureaucrats.  When I have to go through a half dozen layers of bureaucracy to get some services for a family, that tells me there are too many layer of people being paid by our tax dollars.   None of this is good fiscal management.

Then we have our federal role models.  To spend almost a billion dollars for the G20 summit when the rest of the world is talking about economic restraint has made us a joke to the world.  The rest of the world is now referring to it as the “loonie boondoggle”.  This is not really a role model I would want my kids to emulate.

Just one man’s opinion

I returned to Alberta two years ago and the changing demographics were much more apparent to me following an 18 year hiatus.  Since my return I have been very active within the ESL community with families with children living with disabilities.  This is a community that has lost out on a wide range of treatment for their children, primarily autism, due to a lack of understanding of the Canadian system and lack of English understanding.  We have a government system here where if you don’t ask the right questions the information regarding services is not always volunteered by caseworkers.

A little background:  as a polio survivor I have grown up with a disability so I believe I know a little about the level of advocacy required to move ahead in a non-disabled world.  I have been fighting for things long before there was any legislation or real programs for people with disabilities.  Had of I listened to the government of the day I would have been in an extended care centre at age 18 and dependent on the public welfare system for my independence.  That kind of thing never worked for me and I had to fight my own battles to maintain a level of independence and self sufficiency that works for me.   I have always worked, been married, have a family and always been responsible for myself…sometimes to a fault.

For the past twenty years I have been very active with the multi-cultural community.  My involvement has ranged from being a member of the Anti-Racism Conference Committee for the Canadian Labour Conference to eight years as a cultural competence trainer in BC.  I have always maintained that you can’t only talk the talk but have to walk the walk.  Walking the walk usually involves some serious evaluation of your personal belief systems.  These belief systems have to be shaken up and re-evaluated on a regular basis.  So when I see a workshop that professes to present on understanding cultural ramifications on disability, it catches my interest.  So I attended the one today.

Now in fairness the presenters did mean well.  However when you end this type of workshop with a comment by the presenter stating she doesn’t really belief cultural competence can ever be really realized then I have to question it.  Working towards a concept like cultural competence without believing you can accomplish it, then you might as well give up right now.  Successful change requires total buy in.  If you can’t muster genuine buy in then you better shake up your belief system or walk away from the problem now.

The other interesting thing that happened that makes me question genuine buy in was explained to me when I arrived.  A friend of mine, a member of a visible minority is a mother of an adult daughter with autism, attended with her daughter.  When the organizer requested she take her daughter home and then return well I have to question how strongly this group has bought into this concept.  It’s almost hypocritical to run a workshop on culture and disability, acknowledge the fact that many of these families are isolated because other families don’t understand autism and request that the families not bring their child with them for social events can and then ask a mother to take her daughter home, To me this runs contradictory to the purpose of the workshop.

As I mentioned I do believe this group wants to be beneficial but based on the actions I have a hard time believing they have really bought into this concept.  This is the time for them to look deep into their own believes systems and adjusted it accordingly.  Nothing hurts a movement more than having allies who don’t really believe in the cause.

Just one man’s opinion.

A couple of months ago Senator Mike Duffy attacked the University of King’s College and other Canadian journalism schools for exposing students to Noam Chomsky and critical thinking.  Now I am not a journalist however I have had my own column in the past in the Alderlea Magazine so I have learned a bit about the process.  Perhaps when Mr. Duffy attended school times were different, particularly technology.  For a modern man to dump on the idea of critical thinking is a little Neanderthal to me.  And my apologies but I have never read any Chomsky.  With that said I think we are in kind of a valley right now.  We have a relatively new generation of journalists working in the field with critical thinking skills but seem to be lacking a media management system that has yet to really dip into critical thinking skills.  We still have a system that relies on their journalists but responses to information technology. 

On May 7 CTV, among others, reported on the Supreme Court of Canada’s ruling (8-1) that Canadian journalists have no constitutional protection to keep the identity of their sources secret.  This shouldn’t come as a surprise.  With today’s technology the whole process of reporting has changed and there is no guarantee the journalist is the one protecting his source.  In today’s day and age everyone with a cell phone video camera has become a reporter.  With more and more media outlets directing people to submit their news stories and/or pictures/videos the whole aspect of reporting has changed.  The journalists’ job remains the same but the role of news media as a corporate structure has changed drastically.  I am not convinced they realize that.

With social networking sites like Facebook, MySpace, Twitter and 1000’s of smaller ones data flows faster than oil in the Gulf of Mexico.  The problem is it is only data and needs to be converted in useful information.  That’s an information management process.  From my point of view that is what the news media has become, an information management system and not a news reporting system.  I’m just not sure the powers that be realize that.  Too many of the directors of the process are of the Mike Duffy generation of reporting.

I believe the press should be there to present news based on the facts available to them.  But these days there appears to be too many anonymous sources out there that have “leaked” documents or pictures taken with a camera phone.  What always amazes me is how the “leaks” go to reporters that happen to have leanings to the political party that will benefit the most from the leak.  I don’t begrudge anybody their personal belief systems but I do object to reporters injecting their personal biases into, what we are told, is the news.  Conjecture and speculation should really be left up to us bozo’s that spend a part of our day writing posts like this one.

I’ve lived in just about every province in this fine country and have watched the deterioration of “reporting” in every province.  In fact when Gordon Campbell’s Liberal (and I use the term loosely) took over BC in 2001, they did so by taking 77 of 79 seats.  The BC press made it very clear that they would now have to be the official opposition.  I can understand the rational to a statement like that, I was living there, but it does undermine the concept of “objective and unbiased” reporting.

I suspect that is why I spend as much time as I do checking my news online.  It is like comparative shopping except I compare news stories.  I can read five articles on the same issue and get five different perspectives.  Wordsmithing should only go so far and have a purpose.  Wordsmithing defined is “the making of changes to a text to improve clarity and style, as opposed to content”.  If you look closely at the same issue in five different papers you will discover the content can change drastically.  That’s not reporting, that’s creating.

I come from a simpler time and to quote Sgt Joe Friday of Dragnet fame, “Just the facts maam, just the facts”.