The New Zealand Disability Strategy needs to be progressed

The New Zealand Disability Strategy, launched in 2001, was agreed following extensive consultation. It has widespread support, and expectations of its success are high within the disability sector. It is a long-term plan, and therefore requires ongoing commitment, determination, optimism and bi-partisan support by government and the sector.

We are encouraged by the continuing commitment of government agencies to the New Zealand Disability Strategy’s implementation. It demonstrates a raised consciousness of the whole of government approach to a whole of society strategy.
(The Disabled Persons Assembly, 2004) 7

At first glance the Strategy may seem too high level and, at the same time, too ‘motherhood and apple pie’ to be effective. However, it profoundly challenges most aspects of the way society has historically dealt with disability issues.

The Strategy lays out clear ideas and agreements about what constitutes an inclusive society and what activities are needed across all of government and all of society to achieve it. It also introduces requirements for government agencies and the wider community to transform their understanding of disability, and suggests many practical steps.

There are some clear examples of recent achievements resulting from commitment to the Strategy’s goals, including the progress of the New Zealand Sign Language Bill and the establishment of a cross-government review of long-term disability support services.

"The Office promotes and monitors the Strategy within and outside government"

The Office monitors and reports on the Strategy’s implementation. We do this in the following ways:

• monitoring and illuminating – identifying and documenting activity, issues, trends and outcomes for disabled people and their families
• ensuring compliance – reminding agencies of their obligations in relation to the Strategy, and reporting to Ministers, Parliament and to the public on progress
• promoting, informing and influencing – improving understanding of disability issues and the Strategy in the wider population through, for example, presentations, seminars, our website, www.odi.govt.nz and newsletters.

We support a Disability Advisory Council, established in May 2005, whose primary function is to provide advice to us on progressing the Strategy and on any emerging issues. The Council is made up of disabled people and their families who have been selected by consumer organisations nominated by the Office. It does not include representatives from professional bodies, providers or funders.

"Government will review the Strategy in 2006 and 2011"

Section 8 of the New Zealand Public Health and Disability Act 2000, which sets out your duties and powers as Minister for Disability Issues, requires you to report each year on the Strategy’s progress. In addition, Cabinet has committed to a review of the Strategy’s progress after a period of five then 10 years (in 2006 and 2011 respectively).

Support services must meet increasing and diverse needs

Currently, New Zealand’s systems for delivering disability support services reflect a range of historic and disjointed approaches to disability.

This results in complicated access to services, gaps and overlaps in provision and significant inequities. Moreover, the systems sometimes lack the flexibility necessary to meet diverse needs and can create disincentives to participate and be independent.

Each day I wake up I know I should be thrilled that I can share the breath with my four children and husband. At night I dream that this muddled brain will wake up refreshed, my body pain-free and energy restored.

I knew this life several years ago … then I took a heavy fall and knocked myself out. From that day onward I am a different person.

I have had a long and difficult process trying to get help. All I ever asked for was some help to cope with changes and challenges I faced coming to terms with the new me. I’m still waiting and wondering how you work with the system and get well.

If I could get a message to the system, I would say, ‘Please give me your time, concentrate your efforts, just for a bit and complete the paper work, then put in place the recommendations and supports. Then I’ll not have to keep writing, ringing and reminding.’8

"Work to reduce disability must make support services more flexible, accessible and equitable"

Given the increasing prevalence of impairment in the population, work to reduce disability must focus on improving support services. As a guiding principle, government needs to consider the choices and responsibilities that a non-disabled person expects to experience in their life, and it needs to provide disability support systems that allow disabled people the same opportunities.

We have been leading an interdepartmental review of long-term disability support services, which is advising on how they can be improved. Findings to date include the observation that the current arrangements for providing supports are not working as well as they should for disabled people and their families. Improvements to entitlements, funding structures and administrative arrangements for disability support are likely to help disabled people to better govern their own lives.

Disabled people want to work

"We must promote employment for disabled people"

Contrary to the views of some, disabled people want to work. Consultation has repeatedly found that access to employment is high on their agenda.9 For this to be possible disabled people need the right education, equipment, environmental accommodations such as flexible hours, and positive employer attitudes. They also need effective income support in or out of work, to better manage the costs of disability that can be a real barrier to employment.

I was just a teenager when I started having mood swings and hearing voices that other people didn’t understand. I lived in a small town, and the gossip spread like wildfire. After a while I didn’t even want to go to the corner dairy because of the way people looked at me and I lost what little confidence I had left. I also ended up losing a lot of years out of my life.

What made a difference for me was being able to work. I moved out of the town where I grew up and got a part-time job. It wasn’t really challenging but I couldn’t seem to get the sort of job I wanted. I ended up going and getting some training and then I got the idea for the business I still run today. My parents helped me out with a loan to get started because the banks didn’t want to know me.

I don’t think its easy for anyone to get a business going. The failure rates are high. But if you’ve got a sound idea, what you really need is the opportunity.10

The current demand for labour, coupled with the number of disabled people wanting to work, provides an ideal opportunity for government to promote employment for disabled people. The Ministry of Social Development, the Department of Labour, and the Ministry of Health are all focused on improving vocational services to invalids and sickness beneficiaries and other disabled people. This focus needs to be maintained.

Community knowledge and attitudes need to be built

"Better knowledge and understanding can change attitudes"

The consultation undertaken to develop the New Zealand Disability Strategy identified ‘attitudes’ as the major barrier to the full participation of disabled people in all parts of daily life. To implement the Strategy we need to improve public knowledge and behaviour towards disabled people.

The ‘Like Minds, Like Mine’ Campaign funded by the Ministry of Health aims to counter the stigma and discrimination experienced by people with mental illness. It has received many accolades nationally and internationally, and has led to measurable changes in community attitudes.11 There is a lot that can be learned from this campaign and applied in the wider disability sector,12 including successful use of a mass media campaign and fostering leadership of people with experience of mental illness.

We have begun to work together towards common goals with the ‘Like Minds, Like Mine’ Campaign, the Mental Health Commission and the Human Rights Commission. However, further work is required to address discrimination and to promote greater knowledge of disability issues.

Policy making needs to integrate a disability perspective

"Policy must balance opposing tensions and avoid inadvertently creating barriers"

Making a world of difference is by no means all about expensive or complicated initiatives. It is about ensuring policy makers appreciate that past practice in the disability arena is not usually a good guide to future decisions. All sectors of government need to understand the inherent policy tensions in disability issues in order to get the balance right. In particular, the tensions between:

• safety versus the freedom of choice experienced in an ordinary life
• universal design or provision versus targeted individual support
• state versus individual and family responsibility to provide support
• national consistency or standards versus local and flexible provision
• community or provider autonomy versus individual autonomy.

All points on each spectrum are appropriate in different circumstances. However, historically the balance has often been skewed towards the end of the spectrum that minimises individual participation and independence.

Policy decisions have tended to favour safety over freedom and targeted support rather than more general provision.

Sometimes unrelated policy drivers have led to decisions that have not considered the effect on disabled people, but have had fundamental impacts on their lives. For example, the introduction of national standards, along with an increased emphasis on family responsibility and provider autonomy, can inadvertently decrease individual autonomy and choice for the disabled person and present barriers to participation.

The New Zealand Disability Strategy provides an opportunity to address these issues, as relevant policy areas come under consideration. Examples include reviews of regulations, legislation or policies, such as the Building Act 2004, the Residential Tenancies Act 1986 and the Fire Service Act 1975.

Although these policy projects do not have disability at the top of their agenda, the Minister for Disability Issues and the Office for Disability Issues can advocate for improvements from a disability perspective. An example would be ensuring that workplace safety regulations do not make employment of disabled people a liability.

"We recognise that disabled people have the same aspirations as others"

It is possible to move too far in the opposite direction, to forget, for example, that safety considerations and personal freedom are both important. Targeted support, as opposed to universal design or provision, is sometimes more consistent with economic and human rights concerns. For example, special education curricular are necessary for some young people.

Recognition of human rights is important

The core problem in the field of disability is the relative invisibility of persons with disabilities, both in society and under the existing international human rights instruments.
(Report to the UN, 2002) 13

"Our recent disability initiatives have won international praise"

A wider public understanding of rights in relation to disability issues will help to ensure both the motivation and capacity within society to honour those rights. This includes the capacity of those who make and those who administer the law.

Promoting understanding will be most effective alongside an improved legislative rights framework that better acknowledges disability issues and provides for proper remedies. New Zealand is taking steps towards achieving this in both the national and international arenas.

The United Nations is currently developing a binding international convention to protect the rights of disabled people. It aims to address the serious neglect of disabled people’s rights by making disability issues more visible, helping to shape human rights norms to meet the particular circumstances of disabled people, and by making states’ obligations clearer.

Active engagement in this process provides an impetus to scrutinise New Zealand’s disability policy and practices systematically, within the context of international practice. New Zealand is also taking a lead role in the negotiation process, and has won strong international praise for its disability policy over the last few years.

"New Zealand chairs the UN committee developing an international convention on the rights of disabled people"

Interest has been shown in the New Zealand Sign Language Bill, the establishment of an Office for Disability Issues and the New Zealand Disability Strategy as models for positive change. Together these initiatives highlight New Zealand’s disability initiatives.

Recognition of New Zealand’s leadership in addressing disability issues is reflected in our appointment as Chair of the United Nations committee for developing the convention. Our continued leadership should help the ratification of an effective convention. This will boost the enjoyment of rights by the 600 million disabled people around the globe and strengthen New Zealand’s own human rights legislative framework.

Legal expertise needs to be developed

Under national human rights law, not all distinctions are considered discriminatory. Discriminatory distinctions are those that impose burdens, obligations or disadvantages on individuals who are members of groups protected by the prohibited grounds of discrimination (which include disability).

Where people require different treatment to achieve equality, the failure to provide it can impose burdens, obligations and disadvantages, and is therefore considered to be discriminatory. This central principle, that treating people equally does not necessarily mean treating them the same, is particularly relevant to disabled people.

Most non-discrimination provisions are about what not to do, rather than requiring positive action. However, non-discrimination in relation to disability sometimes requires some positive provision. This is acknowledged in the Human Rights Act 1993, through a stipulation that any affirmative or proactive measures needed to ensure equal participation for disabled people, or to eliminate systemic discrimination, must be reasonable. 14

"There is ongoing debate about what is considered 'reasonable' "

However, interpretation of what is considered ‘reasonable’ is not always agreed, and the law in this area is evolving both here and overseas. Achieving full human rights for disabled people will require a clearer understanding of what provisions or accommodations it is reasonable to expect.

This work is occurring through the development of the UN convention, as well as evolving jurisprudence. The challenge for government is to use these developments to provide a framework for changing expectations across society.

We need to strengthen engagement with disabled people

Engagement with disabled people by government presents some challenges. There can be tensions between groups associated with different interests, and competition for resources.

"Resources, representation, and identification are tensions within the disability sector"

There can also be issues with perceived legitimacy of representation. Some groups, though usually identified by others as part of the disability sector, may not primarily associate themselves with it. For example, deaf people may regard themselves as part of a distinct cultural minority group, with its own language and customs, rather than as a group that experiences disability. Many mental health organisations and service users identify as part of the health sector.

There are also older people’s organisations with a major interest in many disability issues (such as support), because a high proportion of members experience some disability. However, they do not necessarily identify with the disability sector.

Negative connotations around historic concepts of disability have led many, if not most, groups to reject the ‘disability’ label at some point. They have argued that ‘there is nothing wrong with us, we are just different, with different support needs’.

It will be important for government to continue to manage these tensions sensitively.

Advice and information need support

A number of ‘not-for-profit’ disability organisations provide information, advice, awareness promotion, peer support and advocacy. These services are critical to the lives of disabled people and their families, and play a central role in effective implementation of the New Zealand Disability Strategy. However, many organisations lack the skills, knowledge and capacity to play a full and effective role in implementing the Strategy.

"We are addressing capacity issues within the sector - but it will take time"

The Ministry of Social Development and the Office for the Community and Voluntary Sector are working together to address capacity issues across community organisations. The Office for Disability Issues is assisting in this work, to help with capacity building within the disability sector. It will, however, take time to address all of the issues.

There is also a need for improved direct government support and appropriate compensation for organisations and individuals that provide their knowledge and advice to government. Treasury guidelines15 for contracting with non-government organisations provide some useful guidance to agencies. They acknowledge that a purely competitive or price reduction approach to contracting can set organisations up to fail.

Developing the support workforce requires cross-agency commitment

An undervalued and casualised support workforce threatens the successful implementation of the New Zealand Disability Strategy. 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 that is more consistent with the Strategy.

Community-based support involves a wide range of activities delivered in a number of settings. A range of sectors have a stake in the development of the support workforce, and an intersectoral approach to workforce development is needed.

"We need a cross-government approach to improving training, skills, and career opportunities"

Separate sectors do have projects underway to address their particular interests, such as the Quality and Safety Project of the Ministry of Health. However, workforce issues would be better addressed as a larger, cross-government exercise, as it would then be possible to consider training and provide more attractive career pathways across a wider field. The Health Workforce Advisory Committee is currently considering how best to progress this work.

Developing the workforce will require significant resources and commitment from stakeholders. This includes disabled people and family groups, unions, professional associations, providers (non-government and government), Standards New Zealand, funders (the Ministry of Health, DHBs, the Ministry of Education, ACC and the Ministry of Social Development), NZQA, Industry Training Organisations, and the Tertiary Education Commission. It will also require close engagement by the Office.

Personal advocacy needs to be more effective and accessible

A range of advocacy services that vary in type, philosophy and values exists in New Zealand. However, there are some significant gaps in advocacy services for some impairment types and for some areas of life.

The Health and Disability Commissioner provides an advocacy role and complaints mechanism for issues related to disability support or health services. The Human Rights Commission provides mediation for breaches of human rights.

Both these services are bound by a legislative framework and a complaints system that tends to provide longer-term dispute resolution processes, rather than immediate support with an issue. There are also a number of general complaints and information services attached to, for example, health services, housing (the Tenancy Tribunal) and income support.

"We need to improve general advocacy services for disabled people"

General advocacy services, such as community law centres, can be used by anyone. However, these services do not have particular expertise in or understanding of disability issues, and they are usually provided by people who do not have a good understanding of disability. This results in general advocacy services being both inaccessible and ineffective for disabled people.

Work is needed to describe current advocacy services in New Zealand and to develop options for improving them, including capacity-building initiatives for people currently working in advocacy roles.

Disabled people have an interest in bio-ethics

It has become increasingly clear that advances in genetics are producing serious threats, both pragmatic and attitudinal, to the very existence, uniqueness and diversity of disabled people.
… These threats are hidden by a virtuous mask of the objectives of cure, enhancement and alleviation of suffering. 16

"Bio-ethical issues are a concern for disabled people"

Bio-ethical issues are a growing concern for disabled people. There is by no means any consensus on how to progress these issues. However, as a starting point, there is consensus that disabled people must have a voice in all discussions that explore our society’s collective values and the concepts that underpin these issues.

New Zealand needs to engage in international debate

Rising numbers of sickness and invalids beneficiaries is an international trend, partly related to the ageing population. New Zealand will benefit from considering the effectiveness of other countries’ responses to this common issue. Moreover, the general approach to disability adopted by the New Zealand Disability Strategy is reflected in many other countries’ disability policies. 17

Sharing our experiences and exchanging ideas will contribute to the growing body of international knowledge about how to improve opportunities and outcomes for disabled people.