DPA Bites – July 2008
EQUAL VALUE OF LIFE
DPA believes the life of a person with a disability has equal value to, and shall be accorded the same rights, dignity and respect as that of a person without a disability. In supporting the belief that a person has a right to life, DPA also acknowledges and supports the right of a person to make an informed choice without co-ercion.
Bioethics report recommendations have “lost the plot”
The recently-released report from the Bioethics Council about pre-birth testing has delivered recommendations that fail to protect disabled people from a ‘designer baby’ future. DPA CEO Gary Williams says the recommendations will simply reinforce disabled people’s concerns that their lives have a lesser value, and are poorly protected.
“The report talks of valuing diversity, the intrinsic worth of disabled people, and how society’s values are important. But then it says the decision is best left up to parents alone, with the help of some information and no pressure on them. I can’t see how asking parents to choose more things about preimplantation genetic diagnosis when disabled lives aren’t given a high enough value right now” he says.
DPA President Mike Gourley is concerned that the report confuses what disabled people want with what parents of disabled people want. “They are absolutely not one and the same thing” he says, “and it’s really inaccurate to imply they are. What this muddle-up does is make us feel really unsafe, and wonder if anybody really listened to what disabled people said”.
The report used a process new to New Zealand called deliberation to find out what people thought about pre-birth testing. In deliberation people discuss the issues using everyday language and without experts telling them what should happen. It’s a process national policy researcher Wendi Wicks says showed promise.
“The opinions were allowed to develop more, and that’s very good. But there was also a strong push to develop a small number of story lines, and the consistently expressed views around valuing disabled lives equally got squeezed to the margins of story lines they didn’t really fit. That’s not good at all.
What’s happened is that the talk about recognising the value of disabled lives has become a recommendation calling for better coordinated support services for ‘the disabled’ and that’s a terrible distortion of the discussion” she says.
Meanwhile Gary Williams is left wondering what next. “There’s such a huge gap between the deliberation and the recommendations, you have to wonder where and when the council lost the plot. From such a promising process we’d hoped for a fair outcome. But it seems we’re still on the margins of recognition and fairness” he says.
DISABILITY SERVICES
DPA believes that every person with a disability, and every family which includes a member with a disability, should receive whatever services and other support or assistance which may be needed to reduce the disabling effects of impairment and the handicapping effects of disability. Services should be designed to make possible for each person a full, meaningful and constructive life of their own choosing.
It’s not our Carers’ Strategy
Disabled people need to be aware of the implications that the Carers Strategy will have on their lives. In April the Government launched the New Zealand Carers’ Strategy and Five-year Action Plan. It attempts to address issues that impact the people who support friends and family members who are disabled or ill.
The Strategy is intended to be a way of valuing the contribution that support people make and is the result of a partnership between government agencies and the New Zealand Carers Alliance.
The actions detailed in the plan cover five broad areas. These are information, health and well-being, enabling support people to take a break, financial support and training and pathways to employment for support people.
Careful scrutiny of the Strategy reveals that the perspectives of disabled people were not considered.
We endorse the reality of our support people, who are closest to us, needing better support themselves. Had we been involved we could have built on the positive aspects of having family and friends supporting us.
It seems the Strategy will result in our natural relationships being replaced with a new support industry.
“It’s my understanding that for the Strategy to succeed, disabled people will be placed in multi-bed residential services for ‘respite’ from family and friends who are paid to ‘care’ for us,” says DPA CEO Gary Williams.
Instead of addressing the real issue of disabled people and their families being left without adequate supports, we now have a Strategy which will have negative consequences for disabled people who live at home.
“The whole notion of ‘caring’ has been hi-jacked. From being a natural human relationship it will be transformed into them and us, contracts for service, timesheets and invoices, payments, OSH regulations, training and one-size-fits-all information.”
Nothing about us, without us!
INTERNATIONAL
DPA’s presence in New York
On May 6 our Governor-General, Anand Satyanand, was presented with the Franklin Delano Roosevelt International Disability Award in New York. DPA President Mike Gourley and Matt Frost of CCS Disability Action attended the event.
The Award was presented by the Franklin and Eleanor Roosevelt Institute to New Zealand for its progress toward the goal of full participation of citizens with disabilities. DPA, along with People First and CCS Disability Action, successfully applied for, and won, the USD 50,000 grant that went with the award. This joint initiative approach was a key reason why the grant was won.
The money will be used to initiate two public education campaigns, one focussed around the essence of the Convention on the Rights of Persons with Disabilities and another within schools using disabled people as role models.
The Awards presentation coincided with the celebration of the Convention coming into force, which was held a week later. Mike and Matt had the privilege of attending both events.
The judging panel said that the decision to give the International Disability Award to New Zealand was unanimous and that no other country came close. The application showed the significant progress that New Zealand has made over the years. It tracked the last 30 years – from a medicalised model through to a more human rights model. In addition, New Zealand is unique in that it has made sign language an official language and it has achieved the closure of all large-scale institutions. Mike also believes that New Zealand’s role in developing the Convention was a factor in winning the award.
The event itself had a truly New Zealand feel and it was obvious that receiving the award was a huge highlight for the Governor-General. He closed his speech with some words of Franklin Delano Roosevelt, that he wrote shortly before his death: “The only limit to our realisation of tomorrow will be our doubts of today. Let us move forward with strong and active faith.”
Mike’s speech had a positive impact on many in the audience, he says, “My speech made it very real for people, as I was the only disabled speaker there. People commented to me afterwards about how I really helped to put disability issues into perspective for them.”
Rehabilitation International World Congress
This August former DPA President, Anne Hawker, will become the first woman President of Rehabilitation International. Ms Hawker will take over the reins at the Rehabilitation International World Congress, which will run from August 23-28 and will be held in Quebec City, Canada.
Gary Williams, DPA CEO, is encouraging DPA members to attend.
“We should do Anne the greatest honour by standing beside her as she takes on this mantle,” says Gary.
The event will be attended by people with disabilities, human rights activists, experts, government representatives and service providers from all over the world. It will be themed about three key issues; key human rights, independent living and social participation and implementation of the UN Convention.
There will be plenty of opportunities for people to discuss disability issues and to form or strengthen partnerships.
You can find out more and register at www.riquebec2008.org.
REGIONAL ASSEMBLIES
DPA believes that the Assembly's strength lies in the effectiveness of its Regional Assemblies, which monitor issues relevant to people with disabilities and ensure that they are addressed at regional and, when appropriate, national level.
It is very important to DPA that its members know how they can influence positive change in their local communities and in their own lives. To help achieve this, each year DPA facilitates three Regional Capacity Building workshops, two in the North Island and one in the South Island.
The weekend-long workshops were held during the last three months. Over 40 people from 16 DPA regions attended as well as the national DPA team.
Experienced DPA members shared with the newcomers what DPA was all about. This information sharing included the functions of the national secretariat and of the national executive committee, and the purpose of the regional assemblies, along with the history, kaupapa and vision of DPA.
Our members make the difference
Co-facilitated by DPA Vice-President Beverley Grammer and Ruth Jones, the lively discussions made it evident that DPA has a huge resource at its disposal. Our individual members have significant skills and networks to draw upon, which puts us in a much better position to make a difference in individual communities.
Beverley Grammer said that a common theme of the three workshops was that, “DPA draws great value from its “owner-operated” nature, that is, it is an organisation run by disabled people for disabled people. DPA has huge credibility too; this comes from 25 years of serving the community regionally, nationally and internationally”.
The key attributes of what makes good leaders were explored in detail. This included how individuals can be leaders in their own lives and how they can influence others.
There was useful discussion around the best ways in which to lobby the Government and local communities on issues such as education, employment, quality support services and community participation.
Networking with People First
Regional forums also strengthen the collaborative relationship between People First and DPA. Each organisation is looking for ways to support and strengthen the other.
Joint initiatives include things such as implementing communication programmes within schools, joint membership drives, and greater information sharing, for example through the circulation of meeting minutes between the two organisations and through having designated people within DPA regional assemblies to foster relationships with People First.
NEWS
Tax cuts not enough
DPA believes any person incurring extra cost specifically due to disability or similar circumstances beyond their control, should be entitled to have their costs met by the government as of right.
The Government has announced in the latest budget that there will be tax cuts and changes to Working for Families and National Superannuation. However, these changes won’t cover rising living costs, nor will they help address the cost inequality issues that disabled people face daily. A significant example is the high cost of transport when you are reliant on Total Mobility.
$46 million more for injured New Zealanders
People who provide home-based support to injured New Zealanders will soon be paid more.
In May the Government announced it will allocate an additional $46.5 million over four years for non-agency providers of home-based support. The recipients will largely be friends and family members.
The sector needs better funding
DPA’s Policy Researcher, Wendi Wicks, would rather see the Government fulfil their promise to fully fund "essential Sector services" provided by Sector organisations.
"To this point, the Government has not fully funded the services that it contracts the Sector to provide in all cases. The announcement in February was encouraging but the intention to fully fund essential Sector services is not entrenched in legislation or even set down in policy. At the moment it relies on the good will of the Government of the day to fulfil this promise.
"If any political party is serious about making sure communities are well served by Sector organisations, they will make sure that full funding is part of their policy," Wendi says.
Parking fines increased for misuse of accessible parks
An issue that has dominated DPA meetings over many years is people who illegally use accessible parks.
This has been partially resolved with the fine for not displaying a recognised permit now at $150.
Annual General Meeting and Conference
Don’t forget, the 2008 AGM together with the two-yearly Conference will be held in Christchurch from Friday October 10 to Sunday October 12.
This year the format is being changed to enable everyone to participate more readily. All the AGM business will happen on Friday
Bites readers are invited to attend and the deadline for registering is September 19, see the registration form with this issue of Bites. The registration fee will be $200.
The venue for the event is the Latimer Hotel. Mention that you are attending the DPA Conference so you can get a discount on accommodation. The website is www.latimerhotel.co.nz or phone 0800 176 176.
For more details contact the DPA National Secretariat.
The NEC May meeting
The National Executive Committee (NEC) met on May 3, 2008. Here are the key outcomes of the meeting.
From the regions
The Committee are still concerned about transport problems throughout the country.
Submissions to the Draft Annual District Plans are due soon. It is important that disabled people provide input to the submissions, and therefore Regional Liaison People are advised to contact their local councils so they can facilitate the appropriate input.
In Wellington, there is concern that people with disabilities may be over-looked when it comes to appointing members to the Disability Services Advisory Committee (DSAC).
In Southland the DSAC is being merged with Community and Population Health Committees. This is worrying as it will result in a committee that has far fewer disabled people. In addition, there is a proposed merger of the Southland DHB and the Otago DHB DSACs.
UN Convention Campaign
The Convention on the Rights of Persons with Disabilities has now been ratified. DPA now has the opportunity to advertise itself and raise the profile of our organisation. We believe that through this, and through other planned initiatives, that we will help to improve the life experience of disabled people in New Zealand.
Queens Birthday Honours for Dr Martin Sullivan
Congratulations to Dr Martin Sullivan who has been made a Companion of the NZ Order of Merit for services to people with disabilities.
Martin has been a strong advocate for the disabled community for more than 20 years. During this time he has campaigned tirelessly for better treatment and improved disability support services for disabled people. In addition, he has played a valuable role in education through his practical research, and in his role as senior lecturer in Social Policy and Disability Studies at Massey University.