A child with autism gets coded and the type of coding determines the amount of funding for that particular child. A child with a speech delay has another coding. So unfortunately, the child without a code does not get funding. This is why a diagnosis is so important.
So the child that has parents that are in denial or the parents who refuse a diagnosis have a child in need but no funding. I'm not sure who made this system or how it came about but it sure can be frustrating. What about the child that doesn't nicely fit a diagnosis? Or what if you can tell something is wrong but you don't know what it is? Or what if the specialist refuses to diagnose until age seven....a more typical age for a child being diagnosed with ADHD?
I had an interesting conversation yesterday with the parent support person at Renfrew. They are trying to help us, the parents of a challenging child. It would be so amazing having someone validate your concerns. She didn't really validate my concerns because she doesn't know Jack. Her role is to support the parents. However she is giving us some suggestions how we can move forward. She is going to contact our family support worker with the government to see if there is anything they can do for us. She will also make up a package of possibilities for other supports. It is truly amazing to have someone that is aware of free supports available to us. More information to come.
She mentioned one service that will come into our home at the most challenging times to help us make strategies to manage Jack's behaviour. There is also another service for collaborative mental health. They will do an entire assessment with everyone involved and then possibly make some suggestions or possibly a diagnosis. These two services are free.
I was starting to think that we were going to have to pay out of pocket to get the appropriate psychological testing completed for Jack. We know of one agency that will come into our home but it costs $180 an hour. Quite pricy and could add up quickly.
So the way the funding works in Alberta is there is funding for school and funding for home. The school funding is called PUF funding or program unit funding. The home funding is for specialized services including the one on one support worker, the speech language pathologist, the program coordinator, the psychologist, the occupational therapist and the physical therapist. Not all children receive all of these supports. It really is based on your child's needs and challenges. We fortunately received all of these supports for Zach. However Jack just has the program funding. The child with autism has more complex needs than the child with a severe speech delay. Unless the child with a speech delay has other diagnoses.