DPA New Zealand

DPA Bites March 2006

DISABILITY SUPPORT SERVICES

DPA believes accommodation support and housing polices must actively promote the right to human dignity and the right of the individual to choose their own lifestyle and accommodation options.

People with disabilities must be able to remain within their own communities and share in an ordinary lifestyle with access to necessary support services when required.

Widen the focus from Focus 2000, DPA urges

The recent flurry of media interest over the funding of Focus 2000 has lifted the lid on a far more important issue of the deep-seated problems in disability support services in this country. While politicians try to keep the focus on the apparent inadequacies of a single provider, disability groups are pressing for a much wider review.

On 19 February, soon after the issue first came to political attention through an Opposition question in Parliament about over-payment to Focus, Auckland DPA issued the following media release:

Failure is widespread

Following publicity about reported unsafe practices at one of the country's largest service organisations, the Auckland President of the Disabled Persons Assembly, Sacha Gildenlore, says that failures are quite widespread.

"DPA New Zealand points out that despite good intentions, most care services are simply not delivering essential levels of quality or safety," said Mr Gildenlore.
Every day, disabled and older people in Auckland and throughout the country put their trust in support services to respect their dignity and independence. That includes help with very personal matters like dressing, showering, feeding and toileting.
Failures range from rough handling and withholding of food and water right through to sustained neglect that can cause death. However, it's often the small things that hurt most - being talked to or treated like a child, or having no control over how your own support is arranged.
"You wouldn't want your own parents or family members treated like a sack of spuds or a naughty kid, and yet that's all too common," said Mr Gildenlore.
DPA Auckland believes that urgent change is needed so that the whole system for funding, managing and providing support services works together to respect our humanity....
"If the Government really wants to know which services are doing a good job, they must talk to the people who use them," said Mr Gildenlore.
DPA Auckland urges proper funding for independent advocacy services who can speak up about problems and reduce the pressure on those who speak out.
"DPA Auckland applauds the courage of those who have brought these recent failures to light. We welcome the interest of the Minister of Health in pursuing this further, and we encourage him to seek advice from the people who rely on support services, not just those who provide or manage them," said Mr Gildenlore.
"Disabled people don't want pity or charity, just an ordinary life with the right support systems so we can contribute to our society and economy like any New Zealander. That's what is promised in the Government's official Disability Strategy, but the reality is quite a different matter, " concluded Mr Gildenlore.
This briefly caught the attention of some media outlets, and Lorna Sullivan representing DPA achieved some quality air-time on National Radio. Most media were however far more interested in a single provider 'scandal' rather than digging into the broad underlying issue. Two weeks later, on 1 March, the national Disabled Persons Assembly tried again:

Disability service audit focus far too narrow

The recent announcement of the independent audit of Focus 2000's disability service delivery for the Ministry of Health is too limited and risks misrepresenting broader problems with disability service delivery in New Zealand.
While this initial examination is a positive development, Disabled Persons Assembly (DPA) is calling for the Ministry of Health to expand the audit to incorporate a wider range of disability service providers.
"A single-focus audit is far too small. Disability service delivery problems extend much further than one organisation and are not limited to just procedures, financial or managerial issues," says Gary Williams, Chief Executive Officer of DPA.
"We regularly hear of real concerns in service provision across the whole range of disability services. So we know that this audit needs to have a broader focus.
"Resolving deep-seated problems within disability service delivery depends on the Ministry of Health listening to disabled people's experiences with different providers, respecting those opinions and involving them centrally in designing services that best suit their needs" Gary Williams says.
"Disabled people regularly tell us about being patronised, not being allowed choices, about providers leaving them stranded unexpectedly, rough handling, injury, abuse and a lack of respect," adds Mike Gourley, President of DPA.
"How will this narrow audit benefit people that use the services of other providers who experience these types of problems?" Mike Gourley asks.
"The audit is a good chance for one organisation to improve its performance, but to create a better deal for all disabled New Zealanders, government and the Ministry of Health needs to commit to a, bigger picture," says Gary Williams.

No media follow-up had been received by publication date.

Nothing new in all this

From the latest review of the NZ Disability Strategy, published in December 2005

In a review over the last year, the Office for Disability Issues found many issues identified in a 2001 stocktake of support services remain unresolved. This includes gaps, overlaps and inconsistencies in service provision. "While there is evidence of minor improvements there is clear consensus amongst the disability community that the current framework for providing disability support services is still unable to support the whole-of-life outcomes disabled people aspire to.
"The likely reasons include that:

The review reports that "The Office for Disability Issues is leading a cross-sector review of long-term disability support services. The first phase has focused on identifying the issues with existing support services. It has also developed a picture of what a system that was working well would look like and what the key components might be to achieve this.
The Review also notes that an undervalued and casualised support workforce will make any improvement in the policy and funding of disability support services difficult to implement. It says turning this situation around requires more than simply increasing funding for "more of the same". The workforce needs to be skilled and empowered to do a different and better job consistent with the Disability Strategy.
"Separate sectors have projects under way that address their particular interests, such as initiatives arising out of the Ministry of Health's quality and safety project, which includes a new position of disability workforce development manager,' the Review notes.
"However, workforce issues would perhaps be better addressed as a larger, cross-government exercise. It would then be possible to consider training and more attractive career pathways across a wider field. The Health Workforce Advisory Committee has been considering how best to progress this work, their reports are available at www.hwac.govt.nz".

NEWS FROM THE NEC

The new National Executive Committee (NEC) met for the first time in Wellington in mid-February.

Census DVD

NEC viewed a DVD on Census 2006, produced by Statistics NZ. Statistics NZ assumed it would be appropriate for all kinds of disabled people but it was specifically targeted at deaf or hearing impaired people.

Review of publicly-funded services

There was discussion with Geraldine Woods, of the Ministry of Health's Disability Service Directorate about DSD-funded services. She is preparing a paper for submission to the MOH on these matters.

The NZ Disability Strategy is her guide for spending $750 million. Geraldine spoke about her intention to have DSD allocate their funding so that people who receive DSD-funded services would have better outcomes.

Discussion revolved around whether people's support should be divided into:

  1. Youth/childhood/family life,
  2. Working age life, and
  3. Retired age (whatever age that is)

The transition from phase one to two is always a difficult time, though ideally this transition should be seamless. A degree of flexibility is important to make the system work.

Geraldine is developing a discussion document which is going to go to all stakeholders including disabled people and their family/whanau, service providers, the Minister of Health and DSD staff.

Review of NZ Disability Strategy

The Office for Disability Issues will be doing this. DPA will have an input into this review.

COmVOiceS

This is a fairly new communications group representing the views of the Community and Voluntary sector, but the lack of a disability perspective is a problem. It appears that it would be beneficial for DPA to understand what they are about. Mike Gourley will attend a ComVOiceS meeting to assess how DPA may participate.

Strategic Plan 2006-2009

The NEC began developing DPA's Strategic Plan for the next three years. The annual operational plan is developed from the Strategic Plan.

Tied into the strategic plan is the need for DPA to review itself, as decided at the 2005 AGM. A Working Group of Mike Gourley, Marion Wellington, Lorna Sullivan and Tony Voss will make recommendations to the 2006 AGM.

Thomas Bryan from the Royal Foundation of the Blind collects the Foundation's award for its accessible website www.rnzfb.org.nz. AccEase, of which Robyn Hunt is a founder, introduced these awards recently. Other recipients of the inaugural awards were the Department of Internal Affairs for its website community.net.nz, and the Office for Disability Issues (www.odi.govt.nz)

Rehabilitation International President coming to New Zealand

The President of Rehabilitation International, Michael Fox, is coming to New Zealand in the middle of 2006. On 10 July he will be part of a one-day seminar that will focus on international issues for disabled people.

Planning for his visit is under way and the Secretariat will let members know once details are finalised.

YOUTH

Promise and Potential

The second-ever DPA youth leadership camp completed its nine-day programme in Lower Hutt in January. Youth leadership project coordinator Nathan Bond said it went very well and the fourteen young people from all parts of New Zealand and with a range of disabilities said they 'got a lot out of it'.

Chosen from 24 who applied, those who attended came from Invercargill to Auckland. Selection criteria focused on leadership potential, and each applicant had to produce personal comments and a formal CV - a novel experience for some. They had a mix of physical and intellectual disabilities and close to equal gender balance. Three brought their own support people, adding to the support team of mentors, driver Brendon Murray as well as Nathan himself.

The venue - at the Lower Hutt Holiday Park - was good and accessible but the accommodation was a bit spread out and this meant some participants didn't socialise as well as they might have outside the structured activities. 'It's difficult to be everywhere at once,' said Nathan. 'Most of them were very well behaved - we didn't have any shenanigans - but it would have been helpful to have another volunteer support person.'

Building leadership skills

Building on the experience of the first camp three years ago, the programme focused very strongly on developing leadership skills. 'We concentrated on what they needed to know to be leaders,' said Nathan. 'We ran sessions on self-advocacy, human rights, Treaty issues, and other leadership skills. Disabled Persons Assembly CEO Gary Williams came and talked about the DPA and People First gave a presentation on learning disabilities. People First also produced a business card for everyone to help them with networking.'

Most of the programme was based on workshops, giving maximum opportunity for interaction. Nathan said participants responded well to this approach; 'they were stimulated and enthusiastic and had lots of questions'. Each day had two intensive three-hour sessions separated by a reasonably long lunch-break to give time for eating, chatting and to relax and refresh. A designated free day half-way through the camp gave free time to explore Wellington - shop, visit Te Papa, enjoy the summer - and the weather was good which helped a lot.

Follow-up and feedback

While the camp is now over for the next two years, follow-up lasts another twelve months. Each participant was matched with a volunteer mentor at a workshop and activity during the camp, and they are expected to be in regular contact for the next year. Matching people proved the hardest part of the exercise, Nathan said; there was a last-minute rush with all the attendant hassles of finding, funding and arranging travel and accommodation.

Asked if he'd do anything differently next time, Nathan said he'd start planning earlier. Because the programme was very full and quite tiring, a bit more free time could have been useful, especially given the length of the camp. Apart from that, things went pretty well and feedback so far - to DPA not to him personally, so the respondents were free to criticize - has been generally positive.

"It was the best thing I have done, wrote Ben. "It was very hard to decide to come in the first place, and then getting ready the night before I went didn't help, but once I got there things changed almost instantly, and from then on it was perfect."

Eric said the best thing about the camp was discovering the WEKA [website] system which he didn't know existed. Laurel said it was "Hearing about other people's experiences in the community, school etc and how they got over some of their fears".

Natasha summed it up: "I really loved camp, and appreciated the opportunity that I had to go. Although things did not go 100% smoothly, that was not really expected and we still all managed to have lots of fun. The workshops were fantastic. I think the people who were helping us were great, and they all fitted in really well."

POLICY

NZ DISABILITY STRATEGY PROGRESS

The latest progress report on the NZ Disability Strategy was released by the Office for Disability Issues at the end of 2005. (www.odi.govt.nz)

DPA President Mike Gourley was asked to contribute a message from DPA. He wrote:

It is satisfying to note that government agencies have made the New Zealand Disability Strategy a regular part of their annual planning and reporting cycle. And it's encouraging to see the growing number of crown entities and territorial authorities willingly taking part in Strategy implementation.

But there is still much to be done. All territorial authorities and district health boards should follow the example of their colleagues who have joined with government departments in making the Strategy a guiding force in addressing disability issues. After all, it is these bodies that have an immediate impact on the quality of our lives - and in many instances, our very existence.

Information, the key to power and control, still remains inaccessible in many cases. A recent survey of government websites revealed many inadequacies and gaps in the usability of websites by disabled people. And if the state of government websites is patchy, the websites operated by non-government disability organisations are in even more parlous condition.

And at a societal level, not enough has been done to give effect to the Strategy's most critical objective: to educate for a non-disabling society. We still desperately need a well-resourced, well-planned public campaign directed at removing the stigma and discriminatory attitudes associated with disability.

An impressive addition to this year's progress report has been the inclusion of our stories. They are powerful illustrations of the ways in which our lives can either be valued and enhanced, or devalued and excluded.

They also pose a crucial question: how can we know if, and when, the Strategy's objectives are making a difference? When will we see the improvements in educational achievement; the rights of employment and decent income taken as read; access to transport, health and personalised services realised; exercising recreational, cultural and lifestyle choice become a matter of course? This report presents indicators of progress in all these areas, which is a useful addition. However, these need to be translated into milestones for departments to aim at.

We expect that the Strategy will be reviewed soon. Without wishing to anticipate too much about the future, at the very least we will expect our voices to lead, guide and inform that process.

INTERNATIONAL ISSUES

Small steps on big issues

DPA CEO Gary Williams was a delegate at the seventh meeting of the committee drafting a Convention on the rights of disabled people.

Discussion on the draft United Nations (UN) Convention on the Rights of Disabled People began in 2002 and so far seven meetings of the UN Ad hoc committee have been held. Current meetings are chaired by Don MacKay, New Zealand's former UN ambassador. It's a huge honour for this country and one which makes us visible as leaders of this process.

This also puts considerable stress on the Kiwi delegates who want to promote the NZ position and at the same time support the chair in a neutral but facilitative role.

A working group developed the original draft text in January 2004 and included participants from 12 international non-governmental organisations (NGOs). The inclusion of any NGOs in a UN working group is very unusual. Now over 70 NGOs form the International Disability Caucus (IDC).

The UN is very big and complex. So while the meetings are supposed to be about the Convention, seemingly unrelated issues such as international co-operation get drawn into the debate. Lobbying around the more controversial issues at a personal and state level is continuous and unrelenting. It's also important to the process because the Convention needs to reach consensus by all parties - nothing is agreed until everything is agreed.

The delegates have to remind themselves that the perfect is the enemy of the good and that it is not possible to devise a perfect Convention when the committee writing it consists of 191 countries, influenced by countless NGOs and lobby groups.

More background information is available on the UN website http://www.un.org/esa/socdev/enable/index

What happened at the latest meeting?

Much of the argument has been around a "paradigm shift" from seeing disabled people as passive recipients of help, services and even guardianship, to seeing them as able people who are in control of the resources they may require.

Directly affected by this change of attitude are the article on legal capacity and the article on forced treatment where many countries take a protectionist and paternalistic role, particularly towards people whom they consider to have mental disabilities. New Zealanders Robert Martin and Chris Hansen were crucial to the discussions.

The IDC has led much of this debate and discussion with key influence coming from the World Network of Users and Survivors of Psychiatry (WNUSP) and Inclusion International.

Both groups are particularly concerned that guardianship, forced treatment and institutionalisation (including drugging, seclusion and restraint) are eliminated internationally. This has met with considerable opposition from many countries. WNUSP have managed to get forced interventions discussed as torture, which has rattled many diplomatic cages. The debate has been invaluable.

The articles on education and work pose some difficulties because the issue of segregation hasn't been resolved. People with sensory impairments want segregation in education while others don't. If the Convention legitimises segregation in education then it may also legitimise segregated settings in employment (e.g. sheltered workshops). New Zealand managed to stall the introduction of reference to alternative forms of work for people with disabilities outside normal labour law protections. However, this issue may also come back at the next meeting in August.

Fortunately institutionalised living conditions will not be legitimised by the Convention.

Strengthening important issues

New Zealand has been a strong advocate for recognition of an equal right to live in the community with choices on an equal basis with others in the community. Text that helps ensure children with disability can live in a family setting, and covering issues for children with disability, was substantially increased.

Acceptance of this was significantly influenced by the lobbying the New Zealand delegation received from CCS and others.

New Zealand helped to secure retention of a paragraph protecting people with disabilities' access to their culture and linguistic identity on an equal basis with others. This should in particular protect access by Maori with disabilities to Te Reo and Tikanga and also Deaf New Zealanders access to sign language. This activity was also informed by lobbying and consultation at home.

Culture and custom

Certain countries, groups of countries and NGOs have unique issues which need quite a bit of debate, diplomacy and compromise to reach a consensus. For example, some countries and NGOs want to keep issues of sexuality and human reproduction out of the Convention.

Issues to do with indigenous disabled people is complicated by the totally separate discussions on a UN Declaration on the Rights of Indigenous Peoples. However comments from some disabled New Zealanders on issues for Maori with disability were heeded by the NZ delegation. Specific reference of indigenous people did not receive wide support and, indeed, met with considerable opposition

More general reference to prohibition of discrimination and taking account of particular needs of vulnerable population groups has wide acceptance. In the UN context, obviously, this includes a very wide range of groups.