Thursday, January 13, 2011

Clarity, Remedy, and Transparency

I had my meeting with C** R** from the School Board yesterday, where we discussed the following:

1. Parents of disabled children have the right, just as any other parents, to be informed of the options available for their children. We can make appointments to view the programs and have the right to approve or not approve the placements we are offered. It is in the School Act. It is law. While there was no admission of an unspoken policy of preventing "parental shopping" of disability services (and I did not expect there would be), I still am still lending credence to the fact that it does exist due to my numerous credible sources. I suspect that more and more parents will challenge the problem, and want to see a more transparent and co-operative environment in the future.

2. Parents must be informed of their rights by the School Board. Yes, it is in the School Act, but people should not be expected to know that, nor to only exercise those rights that they, themselves, can uncover. Especially for parents that have English as a second language or literacy problems, they need to be fully informed, at the beginning of grade 7, of how the transition and placement process should work.

3. If the School Board is facing funding problems so that children are restricted in their access to these programs, the School Board must be honest with the parents about what the issues are. How else are we going to know that it's funding problems and not School Board policy? How are we supposed to organise or challenge the govt for more funding? Instead of just trying to direct children to wherever they can put them, parents should be told about the programs and about wait lists. From a parent's perspective, there's a fine line between mitigating and colluding. Parents and the School Board MUST be on the same side.

4. There needs to be offered some flexibility for the timing of the transition. For instance, I am perfectly willing to keep B at M** Elementary for an extra year rather than put her in a program that is not right for her. This should be an option available to all parents, even parents of "regular" kids who may not be ready just yet to transition. Sometimes kids need some extra time. There has been some talk of having just such a program at M** Elementary, and I would like to see that happen.

5. This last issue I did not talk about with C** R**, but it has been on my mind for awhile. Last night I read that the School Board is looking at recommendations for a K-12 mini-school for First Nations children. I want the same considerations made for a K-12 mini-school for disabled children. I am not against inclusion, but my daughter has spent the last seven years with an adapted academic program, when what she has needed has been a social/life skills program that actually provides the Occupational Therapy, Speech Therapy, and Physiotherapy that she needs. Parents could have a choice of where to send their kids, but instead of having the VERY limited resources available spread out in such a way that no child's needs are being met, wouldn't it be better to concentrate them? To include community health programs in the delivery? To do outreach and have clinics so that parents with children in other schools or other communities can access them?

To add to that, the current method of inclusion actually isolates many disabled children and their parents. My daughter thinks she's the only one in her class with disabilities. She's not, but she sure is the only one with the scope of disabilities she has. She has had incredible problems making friends, and every year I must go through the long and exhausting process of teaching her teachers and workers about her. Often a few times a year, as new teachers and workers come in. I want the choice of having one place, where she goes, where she gets her therapies, has the technologies, and has a consistent and specially trained staff. I want her to meet kids like her, to not be the only kid in her class that needs the level of intervention, supervision, and instruction she needs. So much of her day is wasted time, because she has to sit through instruction that is NOT what she needs. As the psychologist at Children's Hospital said, "Learning the capital of Spain is NOT what will  benefit B." The teachers and workers are great, but my daughter spends the day reading or colouring, and what she needs is a different format. There is only so much flexibility in a standard classroom to offer her what she needs.

There are other ways of practicing inclusion. I know I'm not the only parent to feel this way. I want to have a way for it to be easier to meet parents of disabled kids, without having to ferret them out because I don't know who the other disabled kids are, or the level of disability they have. A K-12 mini school would help us share resources and knowledge in a way that is not happening with only the current model available. If advanced kids and First Nations kids have enough of a common ground and special requirements to make mini-schools a viable option, then surely disabled children do. My daughter, who has a rare and complex set of disabilities, that receive no funding, acknowledgement or support, absolutely needs to benefit from sharing the resources and advancements made in other, more recognisable areas of disability, such as Autism, Down Syndrome and learning disabilities. A mini school would enable the parents of disabled children and their children a way to work collectively, share their individual and collective experience, and benefit from the understanding and recognition that comes from working together.

Thank you,
B's Mom

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