Posts by Hilary Stace
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Up Front: Another Brick in the Wall, in reply to giovanni tiso,
If we write on this board chances are we’re the lucky ones.
My research conclusions that love and luck are the intangibles that make a positive difference in outcomes for autistic or other disabled children has been reinforced for me over many years. I now believe there is also a significant ‘mother’ factor. This was illustrated so well by this week’s story of the mother of the autistic adult men in Christchurch who were temporarily homeless. The news provided a hint of the importance of the the lifelong mothering/advocacy/strategist/planning role required for access to some of the basic rights to health, education, housing etc. I often come across young disabled people without mothers and they are not doing nearly as well (eg housing, education, employment, benefit support) as those with them.
Sometimes you can substitute ‘father’ for ‘mother’, but that role is much less likely to exist for disabled young people, and in my totally unscientific analysis, not as reliable an indicator for good outcomes.
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Up Front: Another Brick in the Wall, in reply to Sacha,
Sacha, I think this might be an overly rosey view. Certainly doesn't happen if you look like you might already have more than your quota, or could possibly be one of those dangerous single mothers.
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Up Front: Another Brick in the Wall, in reply to giovanni tiso,
Or NASC assessors.
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There has been a movement, led by disabled people in the sector, to remove the levels of gatekeeping and replace it with a simple geographic system of Local Area Coordination, as used in other parts of the world. A coordinator works alongside all the disabled people in that area who come to the coordinator for help and guides them through the mazes and finds appropriate services and support specifically for that person. The local area coordinator becomes a bit of an expert on services available in the the local region and various impairment conditions and person centred facilitation for each person and their family. Apparently there is a great deal of job satisfaction and they stay in the job a long time and people feel supported, and all these nice things means money saved over time.
However, when NZ had a go at it, they decided to put the LAC role on top of all the other gatekeeper and fragmented roles, rather than clearing them out and starting again. It is apparently not working very well in the demonstration area (Western Bay of Plenty) and getting expensive. (It is called the New Model if anyone wants to look it up on the MoH website).
An even better system would be to have a local area coordinator who worked with and alongside the whole 24 hour person, which would mean coordination across education as well as home, employment and community. But far too simple an idea.
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Up Front: Another Brick in the Wall, in reply to Lilith __,
Just another example of the complexity and fragmentation of the system. Same name different rules. Just wait till we get two lots of Supported Living when the benefit system is 'reformed' in July. One is the the new name for the Invalids benefit and the other is a MoH programme. (And I hate to think how many beneficiaries details will be 'lost' or payments botched in the transition to the new benefit regime.)
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The Child and the Adult Disability Allowances are quite different things. For a start, the CDA, if you can get it, is not means tested. The adult one is.
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And ring fencing of funding goes back to the 1990s when Jenny Shipley/Ruth Richardson and Lockwood Smith were in charge of these portfolios. Later the philosophy changed with the NZ Disability Strategy etc but the mechanisms didn't.
So we have social model theory but the narrowest of medical model operational policies abetted by neo-liberal ideas of disability as personal fault/defect, plus few people in the system with any understanding of where this situation has come from, which all adds up to chaos and a great deal of unmet need and injustice.
This story from the Press about two homeless autistic brothers will probably resonate with many.http://www.stuff.co.nz/national/8535218/Plea-to-landlords-to-take-in-brothers
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Emma, I know Lucy was being sarcastic but it is a widely held but false perception out there in the sector, that another group is getting something that 'we' aren't. No one is.
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Lucy, no impairment group is soaking up resources. Students with Aspergers or autism are among those least likely to get support either from Education or Health (in fact virtually nothing from Health unless you can prove on particular standardised tests underaken by preferred psychologists that the IQ is less than 70 - autism is not in itself an eligible condition) .
There is just not enough resourcing or understanding for properly supporting many disabled children, young people and adults to 'achieve their potential' (to use a neoliberal term) or fully participate in citizenship.
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Thanks Emma. I was told recently by someone high up that there is no 'entitlement' to the CDA. Everything now is to do with how clever people are at knowing about and meeting 'eligibility' requirements, which like everything else in Disability (tried accessing a NASC lately and quibbling over IQ points?) are being interpreted more and more narrowly.
So much for the social model of disability and the state and society's role in the removal of barriers to participation of people with impairments, which NZ signed up to with ratification of the UN Convention on the Rights of Disabilities, and the earlier NZ Disability Strategy..
I have a colleague who has just submitted her PhD thesis on young Maori deaf children and their families. It has some wonderful case studies. But these families' battles will go way past childhood.