Thoughts on Wait Lists

I was asked a question the other day, that brings back all the passion and frustration of years gone by. The question was one that had been asked of me thirty years ago, and twenty years ago, and ten years ago, and now.

"How do I get services for my child? I am registered with the local developmental services network case managers, and have completed all the paperwork (and answered all the same questions I have already answered it seems a hundred times). I have been told that I am on the "waiting list" for services. When I asked how long I would have to wait, I was told the wait was "indeterminate". When I asked what the "ballpark" wait time might be I wasn't given an answer by those employed to provide me with support and advice. It took another parent to tell me it could be as long as two years or more. When I looked at my child, newly diagnosed (and that's another story, how long it took, and how much effort was put into, getting that diagnosis - but that's for another time), I thought how much of my precious child's life would be sacrificed to waiting for a service that evidence states clearly should be provided intensively and early - as early as possible. And I cried until my husband came home from work - tears of frustration, and grief, and as an expression of my state of helplessness."

I thought of those who have recently been diagnosed with a life-threatening illness, and how they too are sometimes on a "wait list" for services. How difficult a time in one's life that is, and how dependent one feels, and how grief-stricken, anxious, angry, frustrated, sad, and distressed one can be for the period of time it takes until an intervention starts to take place.

And then I thought of the amount of "wasted" time spent in so many of our "support services", as supply is managed carefully to protect the resources that ARE in existence from being overwhelmed by demand - the time taken so that the politics of the situation can be so carefully managed; the time taken to carefully document the activities that take time to perform, although they may have little to do with direct child- or family-related activity, to provide accountability for a service's existence and to defend the situation that exists - even if that is to essentially defend inactivity (in the clinical sense) and protect against allegations of negligence, when one is powerless through lack of resources to do something effective for those who are applying for service.

In this internet age, I am thinking that these parents are now in a position to know what they need to know so much more quickly, and with so much less effort than was the case at the start of my career, things that were obtained mostly by luck by many families of the past. But I despair that even so, the situation hasn't really changed much for so many families with children who have special needs.

I am even more angered when I see how much money goes into areas of our economy that have very little to do with mutual caring, support and other forms of intervention and support that make this world a better place for those born with less advantage.

Just a rant - I'll shake it off and get back to work now. I recall how one of my social workers at Children's Aid who was talking about getting fatigued from too much demand and not enough energy or support from the system. It's the story about two people standing on a beach, on which are strewn thousands of starfish, left high and dry by the tide going out. Left in the sun, they will surely die. One of the people is taking one starfish from the beach and throwing it back out into the surf. The other is saying "why do you bother, there are thousands of starfish on the beach, and you'll never be able to save them all! What does it matter?" The one throwing the starfish is saying back "it matters to this one".