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IHC (Living with Intellectual Disability in New Zealand) has released the last issue of “Hot Issues” for 2009.

In it, they note that the year started with bright promise. In 2008:

• New Zealand ratified the United Nations Convention on the Rights of Persons with Disabilities
• The Social Services Select Committee reported on its inquiry into the quality of care and service provision for disabled people
• The long-term disability support services review was released
• The first review of the 2001 New Zealand Disability Strategy was reported

IHC questions, however, whether there has been any actual improvement in the lives of people with intellectual and other disabilities this year.

This last Hot Issues for 2009 summarises the year’s issues, achievements, and disappointments.

What IHC wants for people with intellectual disabilities

In this the year we turned 60, IHC continued to vigorously advocate for the rights, inclusion and welfare of all people with an intellectual disability and support them to live satisfying lives in the community.

IHC Advocacy released a suite of nine briefings to the incoming Government at the beginning of the year. We called for action, leadership and coordination, and partnership with the disability sector. In particular, IHC asked for:

Sustainable disability support services, including improvements in remuneration for the disability workforce

• Early support for families
• Inclusive education and effective transition to adulthood
• Good income support, with opportunities for meaningful work and participation in the community
• Improving the health of people with an intellectual disability
• Improvements in housing and public transport to increase independence

What didn’t happen this year

Solutions for ongoing disability issues did not feature in the new National-led Government’s initial priorities.

Preliminary work on how to promote, implement and monitor the UN Disability Rights Convention proceeded this year. However, nothing has been decided or actioned. We hope the UN guidelines released in November will trigger the comprehensive action needed.

While the Government response to the disability inquiry in February watered down some critical select committee recommendations, there was plenty to be hopeful about. IHC welcomed the new Government’s expressed support for:

• local area coordination
• expanding the availability of supported living and individualised funding arrangements, and increasing flexibility about the range of supports offered
• giving greater choice and control to people living in residential services
• unpaid carers
• improving advocacy and complaints processes
• implementing cross-sector workforce strategies, action plans and initiatives
• monitoring based on quality of life and opportunities for disabled people, rather than on compliance with minimum standards

New Disability Issues Minister Paula Bennett said what IHC had been saying all along: We know what to do, all the work has been done and now is the time for action. Replacement Minister Tariana Turia said her main focus would be to make sure disabled people and their families can fully participate in society.

By year’s end, however, the need for leadership and prompt timeframes to be set, as recommended by the select committee, is even more evident.

Ministerial Disability Issues Committee: What is happening?

Rather than a lead government agency – or the independent Disability Commission IHC and others called for – a ministerial committee on disability issues was announced in February. It is difficult to know what is being progressed. We had high hopes given the stated goals of the Committee.

Far from providing visible leadership and accountability at the highest levels, the committee has operated in the shadows. Cancelled meetings and attendance by few key ministers seem to have confirmed early fears. Slow progress is being made on areas that were thoroughly examined last year. Frustration is running high!

IHC would like an opportunity to talk with the ministerial committee as the largest advocacy and disability support provider in New Zealand, representing the interests of one of the most disadvantaged groups.

We look to the UK Government, which in January released Valuing People Now: A New Three-Year Strategy for People with Learning Disabilities. This covers all spheres of life for people with intellectual disabilities, raising the same issues as the National Health Committee did here in 2003 in To Have an Ordinary Life. These are the very issues IHC advocates for persistently.

Shining a light in dark places

It’s been left to independent government agencies – reinforcing the disability sector’s messages – to pick up the baton. The New Zealand Government also needed more reminding at the international level on what it has to do to deserve its place in the international human rights community.

IHC welcomed Tania Thomas’ appointment as a dedicated Deputy Health and Disability Commissioner – Disability in April. This focus on disability services and issues was also a highlight of Health and Disability Commissioner Ron Paterson’s report on his review released in August. At year’s end there was no response to his recommendations from the Government.

The implementation of the UN Disability Rights Convention and the New Zealand Disability Strategy was one of the seven key human rights priorities identified in New Zealand’s National Universal Periodic Review report. The UN Human Rights Council said in September the challenge now is for the Government “to reflect [its] commitments in legislation and policy initiatives and financial decisions”.

The UK Equality and Human Rights Commission found that disabled people, in particular people with intellectual disabilities, are at greater risk of violence and hostility. The Disability Clothesline project was launched in New Zealand in November as a way of breaking the silence about violence and abusewww.disabilityclothesline.org.nz/pmwiki.php?n=Main.HomePage andwww.scoop.co.nz/stories/PA0911/S00376.htm.

The UN Committee against Torture reported its concerns in May about New Zealand’s inaction on behalf of victims of historic abuse in state care. It requested that New Zealand provide information on measures taken in response to its recommendations within one year.

IHC does not consider the new government Confidential Listening and Assistance Service is an adequate response. It does not provide for redress or even an apology for the many people with intellectual disability who experienced institutional abuse as children and adults.

The OECD report Doing Better for Children released in September was a sad reminder of New Zealand’s ongoing slide in the wellbeing of our children.

Disability support services languishing

In our briefing to new Heath Minister Tony Ryall, IHC called for sustainable, efficient, quality support services for people with an intellectual disability and their families.

Work is slowly being done by the Health Ministry to make more choices for more people around disability supports – on local area coordination, individualised funding, supported living and respite care. These were already well researched for the inquiry and long-term disability supports review. IHC believes we need reporting on meeting targets for disability support services in the same way as the Government has introduced for DHBs.

Meeting the Challenge, the Horn Report, released in August reinforced what IHC and the sector – and the select committee inquiry – have been saying for so long. The review group recognises the need for: greater co-ordination and simplification of funding, monitoring, and auditing arrangements; more flexibility in funding arrangements; and more outcome-based monitoring and auditing.

IHC values the work that IDEA Services’ more than 6000 disability support staff do. We pay them what government funds us to pay. They are essential frontline workers.  At the end of year members of the Service and Food Workers Union went on strike.

After more than a year, there has still been no decision on the claim taken by the Office of Human Rights Proceedings over the disparity in funding for families caring for family members with disabilities and other needs.

Education Ministry fails inclusive education

2009 is noteworthy for being 20 years since all disabled children and young people gained the right to go to their local, regular school in the Education Act 1989.

Rather than being cause for celebration, this anniversary was made even more poignant by government dragging its feet throughout the year on IHC’s complaint. Students, families and education professionals continued to join the complaint action, with now over 190 affidavits backing up our claim.

In our briefing to Education Minister Anne Tolley IHC asked for:

• Schools that welcome all children and young people
• Schools that are resourced to include all children and young people
• An education workforce that is trained and supported to include all children and young people

We welcomed Education Secretary Karen Sewell’s reminder to boards of trustees early in the year of their obligations for students with ‘special educational needs’ to have the same rights to enrol and receive education.

However, in the course of the year the Ministry of Education continued to avoid using the term ‘inclusive education’, despite this being mandated by the UN Disability Rights Convention and the New Zealand Disability Strategy. Inclusive education is also a core principle of the New Zealand Curriculum.

A plethora of independent government watchdogs each moved to speak out in the latter part of this year. Their ongoing concerns about how students with disabilities and ‘special needs’ are treated and missing out cover many of the issues raised in IHC’s complaint.

In September the Human Rights Commission concluded that New Zealand is failing the four broad international standards for disabled students’ right to education  – Availability, Accessibility, Acceptability and Adaptability. Education-related complaints regarding disabled students continued to be amongst the most frequent groups of complaints to the Commission.

In partial response to such concerns, the Education Ministry said it has started a complaints register, has gained more funding for special needs students and has embarked on a special education review. While IHC welcomed this extra funding, cuts were made to other areas and still teacher aides and other essential support for disabled students remain poorly paid, trained and recognised.

The Special Education review terms of reference were released in August. IHC will make a comprehensive submission on the discussion paper when it is released early next year. We will stress the need for wider education policy reform. IHC also made a submission on the National Standards. We are pleased as a result of what we and others said, there is now some recognition that this cannot be a ‘one-size-fits-all’ system. An effective assessment framework and process must accommodate the complexities of how every child learns.

IHC launched inclusive education resources and our Position on Special Education mid-year. We also participated in and presented at two international inclusive education conferences. We continue to support and participate in the Inclusive Education Action Group here.

Health of people with intellectual disabilities: no improvement

Addressing the neglect of their basic health needs was one of the National Health Committee’s three priorities for action in To Have an Ordinary Life. However, in the six years since, nothing has happened to address their ‘urgent’ health needs.

Health screening has been successfully introduced in Australia for people with intellectual disabilities and is a key outcome of an independent review in England after Mencap’s Death by Indifference report. IHC sponsored Dr Nick Lennox from Queensland University to make two presentations on the health of people with intellectual disabilities at a New Zealand GPs’ conference in September.

A broad review by the Ministry of Health in recognition that reducing the health inequities for people with intellectual disability has been overlooked, seems now to have served to do nothing but delay. As a consequence, New Zealand continues to have its own deaths by indifference.

IHC is disappointed there is no disability representation on the new National Health Board announced in Decemberwww.beehive.govt.nz/release/doctors+nurses+dominate+new+national+health+board.

Sustainable lives

In our briefing to the incoming Social Development and Employment Minister, Paula Bennett, IHC said successful employment and vocational support:

• is flexible, responsive, and tailored to individual needs and preferences
• facilitates inclusion in the community
• enables economic and social contribution

This year’s International Day of Disabled Persons on 3 December focused on how to ensure decent work for persons with disabilities www.un.org/disabilities/default.asp?id=110

The New Zealand Bankers’ Association launched new guidelines in December to assist banks to provide better service to disabled and older customers. IHC and People First were involved in their development. Read more…

Being in community

While government must take a lead, it is to the community we look to truly include people with intellectual disabilities. IHC took community forums and self-advocacy forums around the country this year to tap into what people with intellectual disability, their families, support persons and advocates think and want.

We aired a TV commercial asking people to Take a Moment. It was therefore even more troubling that late this year a presenter on one of these TV channels denigrated people with intellectual disabilities. Paul Henry’s labelling of Susan Boyle as ‘retarded’ has created discussion around the world. IHC says it’s time to put the segregation and discrimination behind us and start working togetherwww.scoop.co.nz/stories/GE0912/S00023.htm.

As a columnist sums up “Instead of using his gifts to ask tough questions of those in power about the issues we’d like answers on, he uses them to mock the powerless. When I last looked, this wasn’t called journalism: it was called bullying.”www.stuff.co.nz/dominion-post/opinion/3131523/Why-does-TVNZ-allow-this-vile-behaviour.
IHC’s wish list for 2010
IHC wishes for:

• a renewed political commitment and integrated work programme to advance the rights, interests and wellbeing of the one-in-five New Zealanders living with disability  – yes, that’s the role of the Ministerial Committee on Disability Issues
• increased recognition of the real barriers to an ordinary life that people with intellectual disability face on a daily basis. In 2009 many are in poor health, lonely and bullied in the community, have difficulties at school and with accessing work or further learning, and have little money to spend. As a country we can do better
• respectful and constructive discussion with government agencies to address long-standing difficulties related to funding and purchasing of disability services, valuing of the disability support workforce and discriminatory policies and practices
• more response to what disabled people, their families, advocates and providers have said for years – let their voices be reflected in decisions made by government in 2010

Please feel free to pass Hot Issues on to others. We welcome feedback and ideas for topics.

Contact
IHC Advocacy
0800 442 442
advocacy@ihc.org.nz

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