THIS is Alzheimers

Early Onset Dementia Alberta: EODA.CA

Our voices are being heard.   On Tues July 22/14 MLA Dr David Swann attended our meeting and listened to our concerns.  He offered some advice on advocating to government “when you tell the government about your concerns you turn on the light, when you tell the opposition, you turn on the heat.”  He was kind, courteous and gracious.  Tues Aug 19, MLA Ken Hehr attended. Again, an MLA who came to listen and offer some thoughts on the current situation in regards to support from Alberta Health and the current government.  Having these MLAs attend is important to our group.  The more people, particularly those of influence, who understand our issues the better it should be. 

The following notes are the opinion of the writer: I usually try to keep my opinion out of the meeting notes but the meeting with Leslie Myles evoked some strong feelings. 

Also on Aug 19/14 Leslie Myles, Manager of the Calgary Dementia Team attended. In retrospect, it was not ideal to have 2 guests at the same time.  The discussion was disjointed and, at least for me, quite frustrating.  Prhaps unfairly, but I felt that Ms Myles can dutifully report to her superiors that she has met our group and “listened” to our concerns. She pointed out, we are a VERY SMALL PERCENTAGE …which I heard as suggesting that we should be happy we are acknowledged at all?  Aren’t worth the effort?  Other significant points included the need to realize that “fairness” and “cost” are very important which I heard as being more important than trying to find ways to meet actual need.  Further Ms Myles stated that Calgary is “setting the standard”  in the province but it seemed to me that Calgary is actually setting the standard for red tape, which I think it does not bode well for the future. The context of that discussion was the need for "more auditing" as there seems to be a lot of concern that people accessing SMC are "taking advantage".  But compared to agencies who pay front line support staff $15/hr and charge $25 to $27/hr I question who it is who should actually be audited. 

Another meeting with Ms Myles could be more productive if we articulated some questions ahead of time.   She could then have time to  prepare/gather some info.  Some questions I have are:

  • The day program.  There was some talk of the day program – it being a pilot, will there be some changes for this year?  How will it be evaluated?  What happens at the end of the next year.   She said something about there being access to more of the facility – on a permanent basis?  Or is that just because it is summer and some of the regular programming is not running?   
  • Some real discussion on the whole concept of Home Care and SMC.  Rational on why if you are on SMC, you can’t access any of the day program? Double dipping, or actually helpful?  I think it depends on your perspective.  Eg – if partner is assessed for 4 days/week at 8 hours a day, and two of those days are day programming – why can’t you choose to send them there?  And if they want to hold back money for those 2 days – ok, only give you money for the other 2 days.  Why is it that you are on SMC and completely unable to access anything they do OR you get them to do everything.  There s/b room for some mix/match.    
  • Looking for community care placements –One of our group mentioned to me that she was refused a tour of one facility she wanted to see when planning for her partners placement.  How could anyone lace their spouse to a place unseen?   AB Health needs to know it happens.  And perhaps they have a strategy for dealing with that? 
  • Since both AB Health and the community care centres are so slow to react to the recreational needs of the somewhat healthy – why couldn’t people who go to the day program now, continue to go when they are in care?  I know!  Out in community!  Outrageous – but…..
  • Ms Myles also stated that insurance liability cost is the reason AHS provided Home Care won't drive anyone anywhere. However, it seems to me that insurance/liability is something that accountants/insurance experts need to explore.  It is no different than your own insurance, as your needs change, so does your insurance. 

I would like Ms Myles to to be invited back but ONLY when both she and our group can prepare ahead.  I did not feel that Ms Myles was unsympathetic, I just got the feeling that she is used to working in a bureaucracy, and that is how she thinks.  We need NEW thinking. 

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