Access by Various artists

Would love to hear from some of the activists from this era.

I remember Special Ed 2000. We had a great set up at my son's school which for various reasons and expertise had become the local specialist 'magnet' school for children with speech language problems. They had developed a programme of individual daily therapy plus extra support in the classroom. At the same time there was a 6 monthly reassessment for each child's extra support funding which involved school staff, an ed psych and other specialists and parents.

After SE2000 funding for targeted support was only available via the new Ongoing Reviewable Resourcing Scheme which involved a long complicated document sent away to an anonymous verifier who never saw the child. We never qualified although applied three times over several years. Meanwhile the school lost its specialist funding for speech language therapists because such one-off models had no place in SE2000, despite their years of success at getting child with SL difficulties catching up their peers.

Thanks for your disability histories to date Hilary. A side seldom told of the 1981 International Year of Disabled Persons and the infamous Telethon is that not all disabled people were sucked into the 24 hour orgy of telling their ‘personal tragedy’ and ‘heroic overcoming’ stories on national TV in exchange for the charity dollar (and increased ratings for TV One). Indeed some of us sat outside the studios with signs rejecting this demeaning, begging bowl approach to disability support.

Similarly, its important that history record the third option proposed by many disabled people in the lead up to Support for Independence for People with Disabilities – A New Deal and consultation over whether DSS should go to the Ministry of Health or Department of Social Welfare. The third option was that a Ministry of Disability be established under the control of disabled people to deal with things disability. Of course we didn’t get that then and the closest we’ve come to it since is the Office for Disability Issues which is certainly a long way from the vision we had in 1990.

Indeed some of us sat outside the studios with signs rejecting this demeaning, begging bowl approach to disability support.

Good for you Martin.

consultation over whether DSS should go to the Ministry of Health or Department of Social Welfare. The third option was that a Ministry of Disability be established under the control of disabled people to deal with things disability.

If only. The Ministry of Health has been an almost unmitigated disaster.

Because who could have predicted that transferring support service management to a sector with a medical understanding of disability would entrench that notion?

Indeed some of us sat outside the studios with signs

.....

Respect for that Martin....but where oh where did that spirit of activism go?

When Peter and I made our wee stand at the Health and Disability conference last year, demanding that providers who kill face criminal charges, we expected to be standing alone.

It is somewhat tragic that that is the case.

I commented elsewhere about people posting and commenting annonymously.

Hard to take someone seriously when they hide behind a pseudonym.

"But...we have jobs, positions of power, responsibilities, families, reputations and incomes to protect....".

(With the unsaid rider that, being a nobody with nothing to lose, I wouldn't understand.)

I do understand the Salinger/Joy effect....speak out and get slammed....but the respect those people earned has much greater worth than any establishment approval.

When Peter and I stood there with our signs, challenging the Commision and the disability "establishment" to demand that providers who neglect to death disabled people in their care face criminal charges, we were completely ignored by the 'noters". (Until Tariana gave her stamp of approval.)

What? We were seen as a joke?

An embarrasment to the 'community"?

Ignore us and we'd go away?

Ho hum.

I did a little interview with Radio NZ Nights about our history of polio. Many NZers are survivors of polio or have family members or friends affected. We shouldn't forget polio just yet. Many 'polios' are having the same issues about accessing scarce disability support and services as other impairment groups. Interviewer Bryan Crump's mother and brother developed polio in the 1950s so he knew a lot about the topic.

It was a fascinating interview, Hilary. Thank you!

This article isn't very clear but it looks very much as if the case is about Carer Support, the Ministry of Health's subsidy aimed at friends and family of children with disabilities who sometimes provide a break for the main caregiver(s).

http://www.radionz.co.nz/news/national/267612/home-care-workers-win-right-to-minimum-wage

If that is the case, it will be interesting to see what follows. Carer support is virtually unusable within the rules for people with high and complex needs and for adults. Although that has been known for years the problem hasn't been addressed for fiscal reasons, leaving families to struggle on.

Carer support is offered as a subsidy rather than a wage, which has carefully avoided the issues associated with employment, but also made it virtually impossible to use Carer Support with anyone other than family or friend, prepared to take a token payment. It boils down to family caregivers not being able to get a break unless they have strong networks.

Sorry, Hilary, this isn't directly related to your post.

My thoughts as well Angela - its too early for these carers to start celebrating given what happened to paying family carers and the vindictive Family Funded Care scheme.

It is probably worth having a look at the Carer Support Subsidy.

Here....http://www.health.govt.nz/system/files/documents/pages/how-to-claim-carer-support-09.pdf

"This service offers the full-time carer a break by
contributing to the cost of an alternative carer."

NB!!!!...... " contributing". NOT "funding the entire cost"

The Miserly has always been very clear on this....Carer Support Subsidy is just that...a subsidy.

Methinks this is another battle the Misery will win.

Everything Angela says is spot on....Carer Support is about as much use as a chocolate teapot...and woe betide those who follow the advice (as stated in the above publication)

"If you are unclear about how you can use your Carer
Support, please contact the person or agency who has
allocated your Carer Support."

..... in case you end up as one of the many, many carers who have followed the advice of the NASCs to be "creative".

http://www.stuff.co.nz/national/health/3418235/Care-support-fraud-hits-1-million

Here's the Employment Court judgment....http://www.justice.govt.nz/courts/employment-court/documents/2015-judgments/2015-nzempc-24-lowe-v-director-general-of-health-ministry-of-health-ors-judgment-of-the-full-court-2-march-2015

Interesting that the Court states..."It is inherent in the statutory framework that the Ministry and the C&CDHB were required to provide health and disability services in some manner; they had the ultimate responsibility of ensuring such services were delivered."

(Note the use of the words "required" and "responsibility".)

When the brandspanking new version of the Public Health and Disability Act says....

"and to affirm the principle that, in the context of the funding of support services, families generally have primary responsibility for the well-being of their family members."

http://www.legislation.govt.nz/act/public/2013/0022/latest/whole.html

Now, (and I may have been out in the hot sun for too long), we appear to have the Employment Court (bless them) saying the Ministry is 'responsible' and the PHDAct(2) saying that families are responsible.

Since MOST unpaid carers are family, and the Carer Support Subsidy is allocated on the basis of unpaid care provided by the (usually) family carer, then methinks the Government response to this EC judgment will be to flick the whole shebang back to the unpaid carer who hired the relief carer...and paid them below minimum wage....because, according to the government we (family carers) are the ones who are responsible (from a funding perspective) for the care of our disabled loved ones.

Yup...too long in the hot sun.

As a serious footnote.

Peter and I spent ten years providing care(in our own home) for a number of disabled children....usually with high/complex care needs.

We were paid the daily Carer Support Subsidy rate of $75 per 24 hours of care.

We accepted this gratefully.

The reward came from knowing what a valuable service we were providing for the parents of these children...as well as the children themselves.

It was no small thing that they were( as children with significant physical disabilities) spending the weekend( or week) with a family where one of the parents also had a significant disability.

We accepted this gratefully.

And that is exactly what the system relies on - our widespread compassion undermines any commitment to professional standards or pay. Good luck over the next decade or two as the current oldest generation leaves us and their more selfish children take up the mantle.

Sacha I disagree with your assessment of the younger generation. For a start they have grown up with disabled people as peers in their schools and communities more than in earlier generations. I know numerous young people who are energetic allies for disabled people in both voluntary and paid roles. Unfortunately, that Rogernomics cult of individualism and neo-liberalism means they are sometimes not great at collective action and fighting for the common good, and they are often struggling to survive economically. But that is not the same as selfishness.

I'm talking about boomers compared with the current retirees, I share high hopes for current children but they won't be in power for several decades at least.

In the meantime, I guess the legendary boomer self-regard (yes, a big generalisation) may actually be helpful as they campaign and vote in large numbers for improved access investment and suchlike. They may however downplay the needs of younger disabled people (like schools, for example).

The system has relied for ages on meekness to dilute demands for change and rewarded potential activists for being polite and moderate. I don't see that continuing forever. The change could be stormy.

As a boomer I take mild offence at your remarks Sacha. We were the activists, and some of us at least still are.
Hilary, you can be forgiven for missing out the brief flowering of EEO in the public service in the late eighties - early nineties because, sadly, little trace of our hard work remains, including our disability pride weeks etc. However the obligations under the State Sector Actare still on the statute books.
Disability was included in the HR Act in 1993, following a strategic alliance with the gay community.
A lot of hard work went into getting disability into the first census in 1996
DPA was not originally a disabled peopl's organisation as it is now. It was set up to be an unbrella organisation for providers and the few DPOs around then, not called that of course. It became a DPO only after a fair amount of blood sweat and tears.
And lastly, thanks for the mention.

Robyn, thanks for that additional information. This series is just my interpretation of a history, and only a summary. At that time I was vaguely aware of the EEO progress and the alliance behind the HR Act. But at that point I was just learning about disability and mainly dealing with the shocking revelation that families experience the education system quite differently when you have a child who is different.