To start, I never thought I was going to share these stories publicly.
Not that our personal story is critical, or desperate, now that I have been hearing of other people’s similar misfortune, I thinks it’s best if everyone speaks up.
I will leave names out of our story, I don’t think they are relevant because the problems appear to be systemic.
Our story has two parts, two different government programs, and one government office.
We live in London Ontario and on May 20, 2006 we became parents to a healthy baby boy.
At two years of age we became concerned about his development after he lost almost all the verbal communication skills he had already developed1. He was diagnosed as having regressive autism after a journey that involved relatives, our family doctor, a developmental paediatrician, and the Thames Valley Childrens’ Centre2, and we are thankful for everyone that helped us along that path to getting our son the diagnosis he needed.
Getting an official diagnosis allows you to apply for many different forms of assistance, and there is a whirlwind of applications that were filled out. If there is one piece of advice I would give to another parent going through the same thing it would be to get organized and document everything. We didn’t get organized until it was apparent we had dropped the ball on a few things, which I will mention later.
I am so thankful for my wife, she is the organizational bedrock of our family.
SSAH (Special Services At Home)
During our frenzy of paperwork one of the programs we applied to was to provide relief or respite care for parents. It is a program that even if you qualify for it, you face a long wait as it is poorly funded by the government.
We filed the paperwork and heard nothing.
This is where keeping records would have helped us. We lost track of the application after not hearing anything until two years later when we received a phone call asking if we had applied for assistance from SSAH.
Slightly befuddled, we said yes and asked why they wanted to know. Apparently our application had been sitting on the desk of someone who no longer worked at the office for two whole years. At least they confirmed we qualified for the program and would be put on the wait-list, the back of the wait-list.
It was explained to us that there was no way they could put us in line where we should have been to correct their mistake.
Well, almost four years later and we have had no assistance from SSAH.
ACSD (Assistance for Children with Severe Disabilities)
Although a smaller case, it shows the manner in which the staff there are treating customers.
We were receiving ACSD for a few years, a supplement to help out families dealing with a severe disability. The supplement is geared to income and while some families never need reassessment, we own our own business and have been asked twice.
This spring we were asked for proof of income and we happily sent it off, hearing nothing in return, until one month the payments simply disappeared. No problem, this happened last time we were reassessed, so we called to see what was going on. We were notified we had (barely) exceeded the high income cutoff and would not be receiving ACSD.
When asked why were not notified of the change we were told it was the summer student’s job to send out notices and apparently they had failed to do so.
We were removed from the program and we were free to re-apply if our income changed. We are not upset by the rules of the program, but by the way the payments dropped off without warning. For a less financially stable family this could have been devastating.
The fact that an important role in the office was delegated to a summer student and not checked to see if it was completed is shameful.
We still have had no notification other than our phone inquiry.
Why am I sharing these stories?
Because I think it is important to let other people know what they face when dealing with bureaucrats. Document, document. document.
Follow up, and ensure your paperwork has not fallen through the cracks, and if it does, you wont get much help form them. Send a letter to your Member of Parliament, Member of Provincial Parliament, or City Councillor depending on jurisdiction, they are your advocate when it comes to dealing with government programs. If your issue is with a provincial program you can also contact the Ontario Ombudsman.
Why didn’t we make a bigger stink when these happened? Mostly because these battles are exhausting, on top of caring for a family member with a severe disability. Also because the ACSD was a battle we had nothing to gain from other than perhaps an apology, but as we hear more and more examples we realize our situation is not unique and something needs to be done to correct the problems in our government offices.
1 For more information on the red flags for autism go to http://www.autismspeaks.ca/about-autism/early-warning-signs/
2 So thankful, our son represents TVCC and is currently on the front page of their website and in many of its fundraising materials. http://www.tvcc.on.ca/