Colleen Brown: Parents of disabled must fight a constant battle

Opinion

COMMENT

So New Zealanders are voicing their well-intentioned outrage at the lack of value attached to Baby C, after the not-guilty verdict of the jury selected to hear the charges brought against her father.

As the parent of a 24-year-old disabled man, I wish I heard these outraged tones more frequently. Not a day goes past in the lives of the disabled in this country without either their value in society being questioned or their place at the bottom of the heap confirmed by society's indifference.

It will be interesting to see how long the current moral outrage lasts. Pardon my cynicism, but there are no winners in the disability community.

Ask the hard questions. Ask the parents how they see the valuing of their daughter with Down syndrome, who has been successfully working as a volunteer in her local library for two days a week all year, as part of school-supported work experience and wants to continue. The library staff do not want her there.

Ask the parents across Auckland who have been involved with the recent Group Special Education consultation rounds, who have explained how they have to top up Ministry of Education funding year after year because it is not enough to cover their children's needs at school.

Ask the parents of young people aged 16 and over who met in the Prime Minister's electorate to ask Ministry of Health officials why there were no appropriate respite facilities in the Auckland region for disabled people with complex needs. That is, no appropriate respite facilities in a metropolitan area of more than a million people.

Ask the ministry official why she did not agree to fund a respite care centre created by parents and financially and philosophically supported by the Manukau City Council.

Ask her why $35,000 was too much to support 25 families in need, so that there was a facility geared up to take their young people at a moment's notice.

And ask her again why she stated to all the desperate parents at that recent meeting that they did get respite care money of some $60-plus a day for a limited number of days a year to cover care for their disabled family members.

That works out at $2.50 an hour. Ask around and see what sort of value that places on your family member. See what kind of appropriate care you can buy with that level of funding.

Ask people with disabilities who are asked to participate on committees and reference groups but not paid the same fee as a non-disabled person. Ask them about being valued.

Ask the Ministry of Education why we persist with boards of trustees making decisions about young people with disabilities in schools when they have no concept of the issues involved.

Ask the parent about the valuing of her child when she is told that the teacher in her child's classroom knows better than the mother that the child does not need additional resourcing.

The fact that the teacher has no training in specialist support for a child with a disability means nothing when voicing such a professional view. Ask parents about their constant struggle to gain access to educational opportunities for their child with a disability.

Ask the Minister of Education why there are no paid advocates for people with disabilities and their families so they can challenge the resourcing decisions made by the faceless verifiers for the ministry.

Then when all those questions have been answered and we've had the "real" conversation about society's values, we would gain a more honest appraisal of the way we value disability and difference.

Sadly, the public has finally been honest in what it truly believes. We'll chew the fat on this issue but we won't examine the challenges underlying the action.

Rights issues are a constant for us. They don't just pop up when there is the tragedy that recently occurred. When this item of news has faded we will still be fighting and battling for our children.

The topic of the value of our children's lives is a continual debate for us. It is life as we know it. From time to time there have been glimmers of hope after a review of such calamities. But then the next morsel of human misery occurs and indifference and our invisibility reigns again.

We've come to expect it. Few people in society understand the value we as parents place on our family members, neither do they acknowledge the cost in claiming those rights and values. Not only are our children not valued, neither are we.

* Colleen Brown chairs the management committee of the Parent and Family Resource Centre.