DPA Bites December 2006/January 2007
What happened to 2006?
It's been a year of action - the passing of the NZ Sign Language legislation,. ethical debates around the use of human embryos and ante-natal screening, the final draft of the international UN Convention on the Rights of People with Disabilities, the closure of Kimberley (the last mega-institution for people with disabilities), proposed changes in benefit regimes, the inquiry into care and service provision of people with disabilities, and the continuing monitoring of the Disability Strategy… not to mention the review of DPA itself.
The coming year is looming as another busy one. Regional DPA activity and support is a priority. Political issues loom large, with the Disabled Persons Employment 'Promotion' bill needing political attention, bioethics as a topic is becoming increasingly important, various communications initiatives and partnerships look promising, inquiries, consultations and feedback requests continue and the DPA Review moves on to its next stage.
The team at the DPA National Secretariat - Lorraine, Wendi, Robert, Julia and I - thank you for your on-going support. We hope you have a great Christmas and a restful New Year break, and we look forward to working with you in the next 12 months.
Gary Williams
NATIONAL ASSEMBLY & CONFERENCE
On the weekend of 24-26 November DPA members and our allies gathered in Auckland for the DPA National Assembly and Conference. Many thanks to Sacha Dylan and his team.
The following are points of interest from the very successful AGM.
National Executive Committee elections
The President, Mike Gourley (Wellington), was re-elected unopposed and the Vice-President, Marion Wellington (Waitara), was re-elected.
Linda Beck (Christchurch), Eamon Daly (Christchurch), Deborah Mudgway (Hastings), Ken Talbot (Timaru), Cheryl Wallace (Gore) and Dot Wilson (Invercargill) were elected onto the committee.
They join David Corner (Dunedin), Beverley Grammer (Whakatane), Brendon Murray (Invercargill), Wendy Neilson (Tauranga) and David Tamatea (Opunake).
The Committee's first meeting will be 9-11 February 2007 in Wellington.
New Life Member
Pauline Angus of Wellington, who was made a life member of DPA, says she values the honour very much. 'It's very humbling,' she said. 'I was stunned.
'It's heart-warming that they have taken account of all my involvement and connections with DPA.'
In nominating Pauline, Rehabilitation International president-elect Anne Hawker said that Pauline 'has provided, through her experience as a physiotherapist and living with people with disabilities (husband and daughter), first-hand experience of the challenges and needs for equal opportunity.'
In her recommendation, Anne Hawker stressed the importance of families and supporters in enabling people with disabilities. 'Quentin [Angus] played a significant role in furthering opportunities for people with disabilities through his legal input. Much of this would not have been possible had it not been for the support he had, both emotionally and physically. This has often been at Pauline's own personal expense.
'She has continued to contribute to DPA both regionally and nationally.'
Working at Wilson Home in the 1940s gave Pauline a unique range of friendships and contacts. 'Sometimes I feel like Mrs Chipps,' she said. 'All those children I knew, coming through now as adults.
'I've had a charmed life really.'
Pauline shares life membership of DPA with Anne, Marilyn Baikie, Marion Wellington and Verona Moynihan.
Remits and other business
Following discussion, DPA agreed that 'Any person without the power of speech, particularly those in situations of supported living and care, should be accorded the right to ask for contact with a named representative on a regular basis if they so choose. The responsibility for contact to rest with the representative. The frequency of such contact to be decided by the client.'
Other matters raised during the final Forum included the possibility of setting up a Taumata Kaumatua and concern about the level of suicide among people with disabilities.
New faces on the NEC
Elected at the recent AGM in Auckland, Cheryl Wallace and Debbie Mudgway both come from Heartland New Zealand - Cheryl from Southland's Gore (famous for its trout) and Debbie from Flaxmere, the fruitbowl of Hawkes Bay.
As the National Chairperson of People First New Zealand, Nga Tangata Tuatahi, Cheryl already has a national profile. She is of Ngati Porou descent, was born and grew up in Mosgiel and now lives in a flat in Gore where she works at the local school. She joined DPA a couple of years ago. 'My experience of disability issues is the same as other members' - being a disabled person and mixing with others, disabled and not,' she says.' As a person with an intellectual impairment, my main wish is that every individual should be able to participate in their communities with appropriate assistance. I also believe it's OK to take risks, and standing for NEC was one of them!'
Debbie spent the last six years in Auckland, where she worked for the Ripple Trust, an organization run by and for people with disabilities, offering disability empowerment and support. Debbie managed their disability awareness training programmes and training on implementing the NZ Disability Strategy. She was also part of the partnership between DPA Auckland and the northern Disability Support Services run by the Ministry of Health.
Debbie is active in her community. She works part-time as the Disability Community Liaison person for Bay Home Support, the local NASC Agency, which keeps her well connected with both the disability community and the sector.
She enjoys living in Flaxmere on the outskirts of Hastings, with her husband and foster-son, though there are some service and support issues. 'Now I am back in my home town, I experience again the isolation and exclusion of the disability sector from what is happening around the country, particularly main centres,' she says. She feels it is important to present a rural perspective on disability issues, as this is a voice seldom heard.
LEADING CHANGE TOGETHER
The focus of our Conference was on practical change - both the richer lives that all disabled New Zealanders deserve, and the stronger voices needed to achieve that. We had inspiring speakers and workshop sessions on a variety of topics to build working relationships and start a journey of action together.
Turning things around takes time
Minister for Disability Issues, the Hon Ruth Dyson, was the keynote speaker at the opening session of the 2006 Conference. In her speech, she referred to the 'good and enduring changes' undertaken since the launch of the NZ Disability Strategy five years ago. But, she warned, 'it takes time to turn around a century and more of discrimination and disadvantage.'
Government departments are on notice to improve their services to people with disabilities, she said, and one which is making an effort is the Electoral Office, which administers elections. 'The Electoral Office has surveyed disabled people who voted in the last elections and asked them what could have been improved. The results of this survey form part of the discussion document on which the Electoral Office has sought public feedback. Changes will be made in time for the 2008 General Election.'
Making disabled people visible is an important part of community acceptance, the Minister said, as she announced the establishment of a Nominations Service to be run by the Office of Disability Issues.
'This service recommends people for appointment by Cabinet to government boards. Information on nominees is kept on a data base which is used to match people's skills and experiences to those required to fill a vacancy.' Application forms are on the Office of Disability Issues website.
UN Convention
New Zealand has been very active in developing this international treaty, said Ms Dyson, congratulating Mike Gourley and Gary Williams on their significant part in the process. 'Our commitment was led by the Office for Disability Issues in partnership with the Ministry of Foreign Affairs and Trade, and there has been involvement and consultation with the disability sector throughout the negotiation process.
'The official New Zealand delegation included disabled people who have worked with the government officials to produce a successful result. We had a New Zealander chairing the committee and our delegation really provided leadership in terms of both the make up of our delegation and the way we worked. It is your slogan "nothing about us without us" in action.'
The United Nations convention has the potential to make a difference in the lives of 650 million disabled people around the world and it represents an important shift internationally in the approach towards disability issues, she said. 'It will make explicit in international law that disabled people should enjoy the same rights that non-disabled people enjoy, without distinction on the basis of their impairment and experience of disability.
'The convention sets out a code of practice that is consistent with New Zealand's own Disability Strategy, and covers a full range of issues from access to justice, liberty of movement, education, health, living independently in the community, and participation in society generally.
'During the negotiation process, we made efforts to ensure that legislation and policy developed in New Zealand were consistent with the directions coming from the convention.
'Some current policy and practice will require more attention, like making independent living work better for disabled people, and ensuring disability supports are available when needed.'
The Minister said she hoped New Zealand would be the first country in the world to ratify the Convention.
Legislation
Ms Dyson said one of her highlights this year was making New Zealand Sign Language an office language of the country. 'I am confident that this work will significantly improve the world in which today's Deaf children grow up. It will assist our society to become a place where the culture and contribution of Deaf New Zealanders are more openly valued.
The next step for us now is to increase the access to interpreters and ensure recognition of the profession of NZSL interpreting.'
However, the next piece of legislation is not so easily dealt with, she warned. 'Repeal of the inappropriately-named Disabled Persons' Employment Promotion Act is still opposed by National, Act and United Future,' she said, 'But the other parties in Parliament are engaged in discussion and I hope that we will be able to get majority support for the repeal to progress.'
Other action
Review of disability supports. Ten agencies provide disability supports, but the Minister noted there are inconsistencies in the way they do this.·
Payment for family care-givers. Most family members don't get paid for supporting their own family. The minister said she understood the frustration of people who provide support as an unpaid family member, where if a neighbour did the same work, they would be paid. 'However, that frustration needs to be balanced against the fact that family caregivers are not always the most appropriate,' she said, 'and we have to ensure that we don't have financial drivers for inappropriate supports.
Implementation of recommendations of An Ordinary Life continues, as does the implementation of the recommendations of the Human Rights Commission Accessible Public Transport inquiry.
'The establishment of the disability advisory council has been a milestone in the implementation of the strategy, where disabled people give direct help, support and advice to both the Office for Disability Issues and to me,' Ms Dyson concluded.
We have now begun the review of the disability strategy to ensure that the process of change and the momentum for change is maintained. I look forward to your contribution to that review.'
Building social capacity
In his civic welcome to the DPA Conference, Auckland City Mayor Dick Hubbard outlined his goal of building the city's 'social infrastructure'. 'Building the social capacity of the city is as important as the four Rs (roads, rates, rubbish and recreation) of physical capacity-building,' he told the 120-strong conference. 'It's not easy but doesn't cost as much as a stadium.'
Mr Hubbard described a recent trip with the Council's strategic adviser on disability, Minnie Baragwanath. 'Minnie took me out into the back streets of Newmarket and Queens Street with a blind-fold so I couldn't see,' he said. 'I learned how important those yellow knobbly things are at pedestrian crossings.
'If we're not open to the changing world of social needs, we run the risk of being left behind,' he said. 'The trick is to predict the future and work with local authorities to make New Zealand a better place for everyone, including yourselves.'
No more high-floor buses
'For the last 25 years, people with disabilities have been trying to get a very simple message across,' said Mark Bagshaw, Conference keynote speaker and Australia/New Zealand director of accessibility for the multi-national firm IBM. 'If everybody had to deal with the issues we do, then nobody would get anything done.'
Mark described himself as being involved in disability reform 'for as long as Al Gore has been involved in climate change'. Twenty-five years ago, he had a diving accident which left him quadriplegic. When he first started working in disability awareness, he said he though people would just 'get it' from the evidence before them.
'It's taken nearly a quarter of a century, but finally they have,' he said. 'Did you know it's now not possible to purchase a new high-floor bus? They're just not made any more.
'In New York, they get an extra 27,000 trips per week from people with disabilities using accessible public transport. Even though they had to be forced by the Supreme Court to do it - it's just so obvious now.'
Mark's message is that bringing people with disabilities into the work force would bring huge benefits for everyone. 'Ninety-five percent of working age New Zealanders with disabilities could be working, but the workforce participation rate of people with disabilities is only 30 percent. That's a huge cost to welfare - think how much less it would cost to give them work opportunities.
'New Zealand is short of skilled workers by 60-70,000. Research shows that the employment cost of a disabled employee is less than that of an ordinary worker.'
He sees opportunities for disability reform in the business sector, such as the quest for a universal design of a safe accessible taxi, to be built from the ground up rather than modified. Similarly, installing lifts in new buildings such as railway stations would help everyone. We have to get the business sector engaged and demonstrate that this should be core business.
'This is a change agenda, not just tweaking,' he said. 'Disability reform is the most important economic and social change faced by society - and the most achievable.'
Lester Levy conference speaker
Dr Lester Levy of the Leadership Institute at the University of Auckland, speaking on leadership challenges and change. 'Our society is grossly over-managed and under-led.'
International scene
In becoming the first woman president of Rehabilitation International, New Zealand's Anne Hawker has broken through a number of barriers. But she says there's still much to be done at global level.
'New Zealand did provide important leadership in achieving the UN Convention on the Rights of Disabled People,' she told the 2006 Conference. 'The inclusion of people with disabilities in our delegation was a significant part of that.
'We must keep the goal in front of us, not our own self-aggrandisement. There is a risk our being used as puppets.
'We also have to be realistic in our tactics. 'The disability caucus involved in the negotiations learned political skills and maturity. It needed to be humble, moving from "these are our demands" to realistic negotiation. At the same time, there is the risk of the caucus being driven by non-disabled people especially those with access to funds.'
She noted however that the DPA motto had traveled overseas. 'Nothing about us without us' has been adopted at international level,' she said.
DE-INSTITUTIONALISATION
DPA believes people with disabilities have a basic human right to participate in all aspects of the New Zealand community. This includes equal rights to education, employment, recreation, rehabilitation, health and accommodation services and the right to a meaningful and adequate income.
The end of an era?
'At last, there are no people living in large concentrations on the outskirts of New Zealand towns and on the margins of society,' said DPA CEO Gary Williams at the celebration marking the close of Kimberley near Levin. 'But though the 400-bed institutions are empty, they have not gone. We have many forgotten people existing in an isolating world called Staffville - places where disabled people provide staff with jobs. There are lots and lots of such places where disabled people live together simply because they are disabled. By their very nature, they are still institutions.'
'This is just a dress rehearsal to a real celebration. That will be when people choose to live with each other and if any of them is disabled it is coincidental rather than an administrative convenience.'
This is just a beginning, not really the end of an era, People First member Graeme Parish said. 'Even though the large institutions are closed, we have to work towards people being supported to live their individual lives.
'We can't have individual lives if we are living in 4-6 bedroom homes not of our choosing. The more people living in such a home, the less we are going to be supported to do individual community activities.
'There is a whole lot more work to do. The community is not always a welcoming and supportive place. I live independently in the community but it is hard, it is lonely, it is frustrating.
'Here's to the future when we see a person with a learning disability pumping your petrol, serving you a coffee in a café, walking down the street hand-in-hand with their partner.
'This is ordinary, this is what we want.'
INTERNATIONAL RELATIONS
DPA believes that it has a responsibility to participate in the international community on behalf of New Zealanders who have disabilities to ensure involvement in sharing of new developments and to promote its aims.
UN Convention of the Rights of Disabled People
At the end of August, a United Nations committee agreed on the text that would be presented to the UN General Assembly for adoption as the International Convention on the Rights of Persons with Disabilities.
The committee had been meeting over a four year period to develop the Convention because the UN had recognized that disabled people's rights had been ignored by existing international human rights instruments.
The Convention specifically prohibits discrimination against persons with disabilities in all areas of life, including access to information and public facilities, together with the right to education, health and employment.
Governments now have a duty to enable disabled people to realize their rights. For example, the right to education might only be realized if people are taught using modes of communication that they know e.g. sign language.
Another aspect of the Convention was the need for a paradigm shift so that disabled people become an integral part of society instead of being demoted to the sidelines in special schools, residential institutions and sheltered workshops.
"Now that the easy part is over and as we look towards its implementation, I expect our Government to show leadership once again by being one of the first countries to ratify the Convention," says DPA CEO Gary Williams who attended most of the negotiations.
The Convention was due to be adopted by the UN General Assembly as we went to print.