Key Messages

• The "disability sector" in New Zealand is made up of a diverse range of people and organisations that do not necessarily have the same interests..
• Overall, the disability sector strongly endorses the social model of disability.
• The disability sector is characterised by strong advocacy by many groups across a range of issues.
• Strong relationships with the disability sector are necessary for the Office for Disability Issues to effectively fulfill its role.
• Proposals for building and formalising relationships with the sector are being developed by the Office now.

Diversity of the disability sector

The "disability sector" is a term often used in discussion about disability policies to describe collectively:

• people who identify as having a disability;
• families/whānau of people with disabilities;
• professionals and other people who work with people with disabilities; and
• organisations and groups which focus on people with disabilities or disability issues.

There are also some groups that are usually identified by others as part of the disability sector but which do not primarily associate themselves with the sector in this way. In particular, profoundly deaf people may regard themselves as part of a deaf culture, with its own language and customs, rather than as having a disability.

The diverse nature of the disability sector means there is a wide range of organisations with an interest in disability issues. The main types of disability-related organisations are:

• consumer and advocacy groups;
• service providers, including professionals;
• groups representing the interests of parents and families; and
• education and employment specialists.

Within these types of organisations, some focus on prevention of disability, others on advocacy, or service provision, education, mentoring or peer support activities. Some stakeholders have a financial interest only, and are involved with securing funds for services for people with disabilities. This diversity means that people within the disability sector have a choice about the type of group or groups they wish to join.

Organisations are also diverse in their operation. Many groups operate nationally, and others operate on a local basis. There are also umbrella groups that represent a collection of organisations with common interests. Organisations also differ in levels of formality and structure.

Sources of finance for most organisations are usually through a mix of contracts and funding from government agencies, private fund-raising, and/or some level of user charges.

Appendix 2 briefly describes the key disability-related organisations within New Zealand.

Appendix 3 provides information on government agencies that have specific roles with regard to disability policy and services.

Different perspectives within the disability sector

Despite its diversity, overall, the disability sector strongly endorses the social model of disability.¹ It is united in defending human rights for people with disabilities. It works to increase the visibility of people with disabilities, as well as the public understanding of their needs. It seeks to promote a partnership with, and empowerment of, people with disabilities. It also promotes greater acceptance and participation of people with disabilities in the wider community.

These common core interests have meant that groups, which include people with disabilities, their family members, and providers, have conducted co-operative or joint campaigns when appealing to govern-ment. An example of this is the lobbying of government by blind consumers, providers, and parents, on meeting the education needs of blind and vision-impaired students.

The disability sector is not always united in its opinion. There are often tensions between people with disabilities, family/whānau, professionals and provider organisations, because of their different perspectives and interests. Some groups, while essentially endorsing the social model of disability, also seek the kind of help that is associated more with the medical model. For instance, families of children with high and complex needs, and service providers for older people, while recognising the need for society to better accommodate people with disabilities, nevertheless place a high priority on medical intervention to help resolve significant problems.

There are also likely to be tensions among people with different types of disability. Individuals with disabilities come from different cultural, social-economic, academic and occupational backgrounds. People can become disabled at any time of their lives due to genetic causes, illness or accidents.

This diversity of disability is evident in the wide range of groups associated with specific disabilities. Such groups include the National Association for the Deaf, the Multiple Sclerosis Society NZ, the Head Injury Society, the Association of Blind Citizens, and Autism New Zealand. All of these groups have a very strong consumer core.

There may also be tensions between groups over issues of representation of the sector. For example, umbrella groups, such as the Assembly of People with Disabilities (DPA), the Mental Health Foundation, and the Association of Supported Employment New Zealand, represent multiple groups in a specific disability area, or in a specific area of interest to the disability community. While their role is focused on advocating and promoting issues relevant to members’ needs and interests, the umbrella groups tend to take a generic approach to disability which is not always accepted by disability-specific groups as being inclusive of all disabilities.

In particular, the DPA says it speaks on behalf of all “disabled people”. However, this is refuted by some groups such as those who speak on behalf of people with sensory disabilities or mental health illness. These groups believe that disability is not a generic concept and their members’ needs are specific and complex. They believe strongly that each group should speak for itself, in acknowledgement of the diversity of the disability sector.

In summary, there is broad agreement within the disability sector about the need to promote a more inclusive society and reduce barriers that prevent people with disabilities reaching their full potential. At the same time, however, the various components of the disability sector do not necessarily have the same interests and may not agree on how this objective can best be achieved.

Participation in consultation and advocacy

Government agencies have increasingly recognised the need to consult the disability sector when developing policies and services for people with disabilities. In recent years, they have tended to give priority to consulting people with disabilities themselves, rather than their families or support organisations.

People with disabilities are also increasingly proactive in seeking change, often lobbying successfully for change as individuals, or as a group, or in partnership with other representative groups.

Historically, people with disabilities played a passive role in the political process; providers spoke for them, on their behalf. This reflected the assumption that professionals knew best what was required, and that people with disabilities, as beneficiaries of charity, should not determine how the charity dollar should be spent. These assumptions in turn reflected the traditional "medical model" of disability, under which disability was seen as an individual problem to be "cured" or contained.

Some decades ago, families began to take on a strong and determined advocacy role on behalf of family members with disabilities. In New Zealand, this was shown most strikingly by parents working through IHC in the 1950s and 1960s² to challenge the treatment of their children with intellectual disabilities in institutions, and to seek appropriate education facilities for them. However, even family advocacy of this kind did not challenge the medical model’s assumption that people with disabilities needed others to pursue their interests for them.

As discussed in the previous chapter, the “social model” of disability that currently applies in New Zealand is characterised by a strong rights-based approach. It recognises that people with disabilities are valuable contributors to, and participants in, the community.

Consequently, it is now generally accepted that people with disabilities are the best judges of their own needs. This is reflected both in government development of disability-related policies and services, which emphasises consultation with people with disabilities, and in the work of support organisations. Partnerships between people with disabilities and professionals are common, allowing people with disabilities to inform the process of service provision so that the best results are achieved for all parties.

Some disability-specific groups have earned a reputation for effective and successful advocacy. A recent example of this is the Government’s commitment to introduce a deaf relay system that allows deaf and hearing-impaired people to utilise the telecommunications network. This action is a direct result of persistent and organised lobbying undertaken by the deaf community over many years.

Effective relationships

The Office for Disability Issues needs to work closely with a broad range of non-government organisations and government agencies that have an interest in disability policy. The Office is expected to provide advice on the many diverse and complex issues that are of concern to people with disabilities and their families, as well as to service providers and other interested groups.

Links with government agencies enable the Office to have effective input into all disability policy. Strong relationships with the various groups that comprise the disability sector are necessary if it is to adequately fulfil this role. The diversity of the disability sector, as well as the unique interests and principles of the group that comprise it, mean that managing consultation with the disability sector may at times be complicated.

There are a number of possible strategies for ensuring effective relation-ships with the sector. These include, but are not restricted to, establishing sector reference or advisory groups, establishing a national network of community co-ordinators, or using existing disability sector networks. We are working closely with the sector to ensure it has a significant role in regard to the information flow to the Office, its operation, and its work programme.

Endnotes

1. Refer to Chapter 4, “Key issues and responses to them”, for further discussion.
2. Appendix 4 provides additional information on this development.

For further information contact the Office for Disability Issues.