“I am happy and proud of his progress but disappointed in a system that makes promises about early childhood intervention but has children on wait lists for the therapy and programs that can help him. ” …
Source: IBI Therapy ~ To Be or Not to Be
I wrote this 4 years ago after my son Johnny was told that he was not a candidate for IBI Therapy. I am revisiting this because hundreds of children with Autism that are over the age of 4 have suddenly been removed from the government wait list for IBI therapy after languishing for years so that Autistic children 4 and under can access the therapy quicker. The government feels intensive therapy would most benefit young children while Autistic kids 5 and over could now be placed in a new “enhanced ABA” program that would offer services according to a child’s needs. That new program will not be unveiled or launched until 2018 so meanwhile children who were receiving therapy or were about to will be transitioned out of program and given a lump sum monetary payment to pay for individualized therapy needs. The promised “enhanced ABA” therapy program will included children from age 5 – 18 and will be another long wait list for services. I remember how are family felt when we first learned about Autism and were overwhelmed wondering how to learn how to approach this when we were told by the developmental paediatrician that IBI was the only documented way to help our son move forward. I remember the panic I felt when I realized that we had to find other ways to help him as his name moved up a wait list. I remember feeling like our family was abandoned by the government when we were told that Johnny was already meeting the goals that the IBI therapy program would teach to get Autistic children “school ready.” What now?
Johnny was now in kindergarten so the school system was now to take the lead in his life. A school system that was facing cut back from the provincial government that was directing school boards to balance its budgets. Speech Therapy programs funded by the government were only for pre-school aged children so Johnny’s last chance to access this was 6 years old before he aged out. Occupational therapy is not funded by the government so we have to pay privately. At school, school board SLP’s do not do speech therapy but so language services and classroom teacher consultation. If your child needs speech therapy to access the curriculum, this is contracted out and is done for one service block then the child’s file is closed for one year and re-opened and the child is re-asssessed. Johnny is completely non-verbal at this time so what do we do? He can dress himself but how can he navigate the classroom environment? There are EA’s at Johnny’s school but they are technically attached to the classrooms and not the specific child which we are constantly reminded of by the Principal. This way the Principals can move the EA’s around in the school as the classrooms need support for other special needs children depending on the classroom teachers’ schedules.
Our family decided that since the government and the school system were only going to help Johnny in an ad hoc kind of way we needed to do something different and try and get him ready ourselves for Grade one. We decided we would only have him in kindergarten for half days (full day kindergarten) and then the afternoons would be filled with private developmental special ed school, speech therapy, occupational therapy, social peer communication Autism groups and much needed down time. We decided to not think of the big picture of Autism, school and speech but break everything down into manageable chunks that our family and Johnny could handle. Johnny needs to learn to print, jump and climb so lets do Occupational Therapy. Johnny needs to learn to talk so let’s find a SLP that can teach him. Johnny needs to learn to play with children so lets find someone that can teach him this. It was not perfect but it worked. It worked when a government failed our family. It worked when a health care system failed to help Johnny. It worked when a school system failed to get him school ready but expect him to “behave” in the regular classroom with little or no support.
My advice to parents whose children have been denied IBI therapy after being on wait lists and being told that this is the only way is to keep fighting. At the same time take a deep breathe and know that you will always have to fight for services at every level. At the same time think out of the box and ask all the professionals you know and other parents of Autistic children because some of the best resources for Johnny have come this way.