The Sept. 7 Tait Debate: An invitation for ice cream with my grandson to those who think we received preferential treatment (CLICK FOR MORE)

Our grandson Nicholas in our living room (AFTER SCHOOL)

Just a little after 7:30 a.m. weekdays my day begins when my 10-year-old grandson Nicholas walks into our bedroom door and leaps on to our bed. First, he gives my wife Joan a big hug to start the morning and then rolls over to my side. “’Morning, Papa,” Nicholas says, often punctuated by a long yawn. I pull myself out of bed, get into my wheelchair and watch cartoons while Joan cooks and gives him breakfast. It has been our way of life  for five months now after Nicholas’ mother passed away from cancer. Our son Darren drops him off in the morning.  Joan drives Nicholas to school in the morning, takes him lunch and then picks him up in the afternoon. Nothing was going to stop Joan and I from providing the best environment for Nicholas and a time when he needed it the most.

But we came very close to losing that. Very close. In June Alberta Health Services decided to re-vamp home care by dismantling many successful programs. I have cerebral palsy and require assistance in bathing, dressing and other things. Since 1997 Joan and I have lived in a condominium with 24-hour home care. Under the brilliant leadership of founder Larry Pempeit who formed Creekside Support Services — a non-profit group — 14 people with physical disabilities in the Creekside complex live independently … all because of home care. That wasn’t good enough, it seemed for AHS. In fact, they told us a new homecare provider would be coming in, with new staff, who, incidentally, might be on-site 24 hours a day like we had.

It scared me. I was afraid I might have to move into a nursing home. Nicholas wasn’t ready for that, I said to myself. It would also mean I could no longer be the grandfather I wanted to be. So we fought like hell. The day before we met AHS officials and were told of the changes, my neighbor Heidi Janz and I had a chat.

Alison Redford

What if, we wondered, we asked Alberta premier Alison Redford for coffee to share our story? So we did on this very blog. (Have a look here.) The day after I received an e-mail from Redford’s press aide Neala Barton saying our invitation had been accepted. We met Redford five days later and within 48 hours our meeting, the AHS decision was reversed. We still have our homecare program intact.

Last week Creekside Support Services came under fire in a report (click here) on how the home care contracts were handed out. One unnamed company is claiming we got preferential treatment because we met with Redford, causing Calgary Herald columnist Don Braid to chime in on the debate.

Hedi Janz

I find this very petty. So does my friend Heidi who replied Friday with this. One has to wonder if this company even asked for a meeting. Funny what happens when a requests are made ... I would suspect the got in a huff because the reversal had a huge financial impact on them.  For me, it was personal. It was about my family, and it was about having existing services in place so I can be the best husband, father and grandfather I can be. It’s about the circle of care: because I am cared for, I can care for others.

Homecare isn’t just about dollars and cents. It’s about empowering people to be the best they can be. So rather than inviting this unnamed company for coffee, I’m inviting them for ice cream with Nicholas and I. They can ask Nicholas how much fun it is jumping on Papa every morning to wake him up  — and then draw their own conclusions.

Nicholas in our living room playing trains

Sept. 6 Tait Debate: Guest blogger Dr. Heidi Janz on home care report (click here for more)

How Does Granting a Plea for Dialogue to Save Our Independence Become “Preferential Treatment”?

by Dr. Heidi Janz

In a Calgary Herald column which appeared on September 4, 2013, Don Braid reports:

In a long report on clumsy and insensitive AHS handling of new homecare contracts, there’s a startling line on page 88 that instantly rang political gongs on Wednesday.

Some homecare providers vying for contracts, the document says, “were upset that other service providers that had approached the Premier received preferential treatment and in their view this option should be available to other providers.”

The wider finding of the report, ordered up by Health Minister Fred Horne, is that Alberta Health Services kind of forgot about the people who need home care when it started awarding big contracts to private national companies.

That jolted AHS and led to a reshuffling of contracts, some of them away from big outfits like Ontario’s Bayshore, and back to worthy non-profits that have served Albertans for decades.

But the full report didn’t come to light until Wednesday … And it contained that explosive suggestion — repeated without elaboration — that Premier Alison Redford was somehow playing favourites behind the scenes.

Redford herself didn’t comment Wednesday. But her press aide, Neala Barton, says the only relevant meeting on Redford’s schedule was with an Edmonton co-op agency in June.           

This was well publicized at the time, mainly because one of the players is the remarkable Cam Tait, blogger, and longtime Edmonton Journal writer who has been afflicted with cerebral palsy all his life.

Now, in the interests of full  disclosure, let me confess that it was I, along  with friends and fellow Creekside Support Services users Tait and founder Larry Pempeit,  who conspired to unduly influence Premier Redford to reverse a wrong-headed  decision by AHS to blow up our user-run homecare services, and hand over all control of our personal care—and, with it, practically all control over our lives—to a big-box, for-profit homecare provider. For anyone interested in the facts of what such an arbitrary change in homecare provider would have meant for us, here they are:

·      No longer were we 14 Creekside users with physical disabilities to have any say at all in where, when, or by whom our personal care was provided.

·      We were going to lose all of our current health care aides—many of whom had worked with us for 10 years or more.

·      We would no longer be able to receive personal care services outside our home. For some of us, this would mean no longer being able to go to school or work.

·      According to the representatives of Alberta Health Services  Homecare, with whom we met just five days before we met with Premier Redford, there was no guarantee that the new service provider would be able to provide the 24/7 care that many of us require, and currently receive.

If any of you are surprised by any of these facts, you’re in good company—so was Premier Redford. My own sense is that it was being presented with the real effects that this decision was going to have on real people that affected the reversal of this decision.

So, to those unnamed applicants accusing us of unduly influencing the Premier, I would simply ask this: Would the decision on who was awarded Homecare contracts affect any aspect of your personal life, other than perhaps the size of your bank account? Would it affect when (or if) you get  up in the morning?  When (or if) you can use the bathroom? Who cleans you after you use the bathroom?

If you’ve answered “yes”  to any of the preceding questions, we owe you an apology.

If not, I’d  say, you owe us one.

Please click here for Don Braid's column.

To keep the conversation going please click here

The Friday Camburger: How does que-jumping build a caring culture?

The media around these parts have many stories and angles covered about the que-jumping debate in the province’s health system following the release of a report. You can find the details, stats, figures, graphs — everything you wanted and more — in those reports. I’m not going to debate the report today, but rather ask a question: what kind of a caring culture does que-jumping create?

We need to challenge ourselves to be mindful of Albertans with severe health issues should be a priority. As a province we have a responsibility in that regard. We need to ensure all Albertans that when they go to get medical help they will get it in a timely manner. Part of the recovery process in any illness starts the minute a physician starts listening to a patient. That hope is priceless.

It’s no secret: the Alberta family is expanding. We need to care for one another in new ways and be compassionate and understanding as our population grows. Building an unselfish culture is crucial as we move forward into the future: putting others first. I really don’t see how que-jumping will increase Albertan’s capacity to care for eachother.

KEEP THE CONVERSATION ROLLING BY CLICKING HERE

A petition against lack of communication with people with disabilities — revised Friday at 5:15 p.m.

We’ve started a petition today against the Disabled Adult Transportation System on their new policy, set to roll into gear Sept. 1. DATS is changing their cancellation policy from 30 minutes to two hours without any consultation with their users. We petitioning the policy — and the lack of communication DATS had with their users: they only shared the news in the DATS newsletter — after the policy was changed.

We’ve seen this lack of consultation rodeo before. In June, Alberta Health Services made wide sweeping changes to home care without — you guessed it — any consultation. In fact, (I know from personal experience as I am a home care user) when existing home care programs were asked to submit proposals, we were told if we called our MLA or the media our proposal could very well be disqualified. Why does the word bullying comes to mind?

Perhaps we’re seeing a trend. I think we need to make a statement and encourage all levels of government to have better consultation with people with disabilities before making significant changes. But, first things first: the DATS policy. If we get enough signatures by Aug. 1 on the lack of consultation with users on the new DATS cancellation policy we will deliver the petition to Edmonton City Council. One never knows: maybe City Council will reverse DATS cancellation policy. After all, we will have talked to people to get their input. 

CLICK HERE TO SIGN THE PETITION

CLICK HERE TO KEEP THE CONVERSATION GOING

A green folder with a chart? In my bathroom at home? You're kidding? Right?

Green doesn’t go very will with the color schemes in my bathroom.

But now I have a green folder in my washroom. And what’s worse is what in it — causing one to seriously ask if Alberta Health Services is running scared?

Perhaps more to the point: the provincial government’s health arm, apparently, believes all Albertans with people with disabilities do not have — and should not have — much control in their own care.

And we’re supposedly living in 2013 with progressive thinking?

I have cerebral palsy and use a wheelchair. I need assistance with my morning shower, getting onto a bath chair and adjusting the temperature of the water.

Here’s where the green folder enters the equation … and the bathroom. Alberta Health Services has implemented a new program: the person helping me with my shower must check the water temperature three times.

There’s a chart in the green folder and now must be initialed by the staff member after checking the shower temperature.

I seem to have lost the ability to do so myself, despite my 50 plus years of experience, and despite AHS officials not having the class to ask me if I can do so.

But hark! Something like that would take too much time, wouldn’t it? So AHS has decided to deem all people with disabilities in the same boat — tubs, you see, would be too small — and declare all of us mentally unfit to judge our own bath or shower water.

What if I come home next winter after being outside on a cold, stormy night and I am cold — and want a nice hot shower to warm up? Nobody can determine but me the warmth of the water that will warm me up except ... me.

I am insulted thinking that individual right now seems to be running down my shower drain.

I resent my own home, the very place I own with money I have worked for over 30 years, being turned into a mini-institution. Not even a single millimeter.

Over the decades, people with disabilities have fought blood, sweat and tears to live in the community and take risks, rather than co-habituating in the stoic walls of nursing homes and extended care centres.

I am fearful this new initiative — and I’m being kind, here — might be just the beginning of AHS taking more control. What’s next? Signs in our condo’s lobby stating visiting hours are over at 9 p.m.?

We have to ask ourselves why? Why is this happening now?

A good friend made an interesting point Sunday: something probably happened with community care that was handed over to a lawyer who let legal jargon over rule common sense and first-hand experience. AHS had to act, do something — and their new charting system fit the knee jerk reaction perfectly.

I am not, by any means, dismissing the seriousness of the scalding water.   Jeannie Wilson died in 2004 when she suffered burns in a bath tub as a resident living in the Jubilee Nursing Home in Edmonton.
Words cannot describe such a loss. 
I strongly suggest testing water temperatures for people who cannot do it for themselves is mandatory. Absolutely.
But it is fundamentally wrong for Alberta Health Services to march into private homes of mentally alert people and arbitrarily make such intrusive changes. 
It begs the question: how much is Alberta Health Services is, and why are they spraying innocent people with cold water?