Tuesday, January 10, 2012

Spitting Nails

Both Mom and Dad are so mad we could just spit nails.

It was another day of e-mails, tweets, phone calls, meetings and hand shakes. What was accomplished? Not much. I did go to meet the good people at The Phillip Azziz Centre. They are the org that is building Toronto's first youth hospice, Emily's House. They call it Toronto's, but it's one of only five in the entire country. The only other one in Ontario is in Ottawa, so I call it Southern Ontario's first youth hospice. It will have 6 beds. It's designed for 10, but the province will only fund 6. I could go on and on about what's not right, but I'm sure glad there are good people working very hard to make that happen.

Later I stopped by Peter Tabuns constituency office. I really just wanted to say thanks for helping bring attention to our situation. I credit his efforts as much as the story in the Star. It was a combined effort. I thanked him and then we got to talking about the bigger picture. I reminded him that this is not just about Mark, it's about all the complex care kids who disappear between the definitions and boundaries. Emily, after whom the house is named has crossed the age boundary and is therefore no longer eligible to live in the house she inspired. Her family faces the very same challenges we do, but they are not getting any of the help we are now seeing.

I returned home to join a meeting with Linda and the nursing agency. We were working out the details of exactly what the 24/7 plan would look like. In the end we agreed on a 20/7 plan simply because the logistics were a better fit for us.

Then we got a call telling us that the Service Resolution meeting that we were going to attend on Wednesday had been cancelled. Actually, we had been dropped from the agenda. We were told that CCAC was having a second look at the situation to see if they could do something more. Later we heard that there was a meeting going on, I suppose that's a good thing.

So what made us so nail spitting mad, it's the 18 years of age line drawn in the sand. All of this time, since the beginning of December, we have been waiting, while the powers that be sort out which side of the line the funding comes from. That may be an over simplification of the bureaucratic complexities that were unfolding, but there is no doubt about the significance of the number 18. The entire funding model is based on whether Mark is a youth or an adult. For special needs kids, they go from pediatric care to geriatric care. Ask the Doctors if this make sense and they will tell you it make no sense. In fact the criteria for adult hospice care is very different than it is for pediatric hospice care. The one very important difference is that in an adult hospice, geared very much to the late stages of life, a feeding pump is considered a life support device and is at cross purposes. So a child with a food pump would not be accepted into anything other than a seniors home. In most cases parents keep these children at home, at great expense (unmeasured by the budget managers) to themselves which ultimately impacts their ability to deliver care. The 18 yr line in the sand does not serve the needs of the patient, it's only function is to protect the funding silo.

I went from being sad and weary, to being tired yet determined. I won't be shutting up anytime soon. I hope the media really gets hold of this story and gives it some serious investigation. My goal is to take this subject trending. If you want to help, than tweet and retweet #youthhospice and FB share and e-mail, and snail mail, and phone and...

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