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Blog: I Am Beyond Fighting

By Colleen Brown – 16 November 2016

 

Last week I heard about a mother who has decided that her precious child for whom she has fought so hard over the years will no longer attend their local school. Despite gaining an ORS classification and accompanying package of resources the school cannot meet the child’s needs within the bundle of resources allocated to them. Instead the child will attend a special school many kilometres away. I dread to think of the length of time that young child will spend inside a taxi traversing the distance to the specialist facility so far away from the small town they live in. For years to come. This is their future.

This heart-breaking decision is not a real choice for the parent. It is a default position. Why? Why after government policy after government policy has promised so much for disabled children – are parents still the ones left at the frontline defending and advocating for their disabled children – alone.

Alone. Such an empty word.

All parents, of particularly disabled children, have felt the significance of that word ‘alone’. Unfortunately, many families still face the challenges day to day of a seemingly indifferent society – alone. Parents and families are cut off, stigmatised because of their disabled child, treated separately, differently and it seems no one gives a damn.

Twenty years ago, one of the first advocacy cases I ever attended opened my eyes to the stupidity of a system riddled with siloed budgets and bureaucratic mandarins protecting their bottom line. That case has so many parallels with the one I’ve outlined above that it is hard to believe that any changes have occurred in the interim. My advocacy experience some 20 years ago was about twins who attended the same local primary school One was disabled and according to the school, there wasn’t enough resourcing to cover the needs of that child so that child was to travel by taxi every day a lengthy distance to a special school. The cost of one day’s travel would have met the costs of the required support in the classroom for a week. As the taxi budget was separate from the teacher aide budget it was deemed perfectly satisfactory by the group of Ministry of Education staff attending the meeting to ‘sort the problem out‘ in such a manner.

It was lose/lose thinking back then and it is lose/lose thinking now.

In the case 20 years ago, the rights of the disabled child and his family was compromised. He was separated from his twin, from enjoying the fun aspects of being part of his community and isolated from his peers in his local area. No negotiation. No support for the parents and family. No innovative problem solving.

The same will happen for this young child living in a small community today. I have to ask the same questions as I asked 20 years ago. Why is it so hard to move money around the same ministry? Who is looking out for that family and all families’ well-being and their long-term survival? Why isn’t there mandatory reporting when a child is moved from one school to another mid-year and not during a transition time? Who is to be held accountable – the ministry? The school? The parent? No one apparently.

So, I ask the same questions as I asked 20 years ago. Why do parents who have to live in the same community as often the teachers and the Board of Trustees of the school their child attends have to do the fighting? No knight in shining armour for them. No rescue package. Just mandarins ticking boxes in citadels far removed from the day to day reality of what it is like to be a parent trying to do your best for your child with a disability.

And without the rigour of those questions being asked, without the need for strong accountability measures in place, I’m not surprised that the parent is – beyond fighting.

 

 

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