The Disability Survey following the 2013 Census revealed that 24% of the population living in New Zealand or 1,062,000 people identified as disabled. They ‒ or someone on their behalf ‒ reported a long term impairment which affected their ability to carry out everyday activities. Over 59% of people over 65 reported disability, as did 11% of those under 15 years old. A typical older disabled person is a woman with a physical impairment while a disabled child is more likely to be a boy with a learning disability. Fifty three percent of disabled people reported more than one impairment type. Māori and Pacific people have higher than average disability rates.
Information from the Disability Survey is still being analysed. Reports released so far show that disabled people are less likely than non-disabled people to be in paid employment and more likely to have lower levels of personal income. Other government reports have confirmed anecdotal information that disabled people are more likely to be dependent on a benefit, have poorer housing and health and lower life expectancy than the average New Zealander.
In addition to those with impairments hundreds of thousands of New Zealanders have a disabled family member or have paid or unpaid caring responsibilities for people with impairments. Numerous government agencies, businesses, NGOs and voluntary organisations provide disability support and services. This ‘disability sector’ is extensive and growing but has largely been overlooked by policy makers. The first Minister for Disability Issues was only appointed in 1999 and a small Office for Disability Issues (www.odi.govt.nz) is now located in the Ministry for Social Development.
New Zealand’s public disability policy is based on what is known as the ‘social model of disability’ as described in the 2001 New Zealand Disability Strategy (NZDS).
Disability is not something individuals have. What individuals have are impairments. They may be physical, sensory, neurological, psychiatric, intellectual or other impairments. Disability is the process which happens when one group of people create barriers by designing a world only for their way of living, taking no account of the impairments other people have.
An example of social model policy is the requirement for public buildings to be accessible to all citizens. ‘Disabled person’ thus becomes a political statement as in disabled by the system. In their annual reports government departments are expected to report against the NZDS although it is not a legislative requirement.
In 2008 New Zealand ratified the 2006 United Nations Convention on the Rights of Persons with Disabilities (CRPD) which is based on the social model, and describes in a series of articles what rights look like in a variety of contexts such as education, health, independent living and the justice system. The New Zealand government and civil society NGOs now report regularly on CRPD implementation progress, although New Zealand has not yet signed the Optional Protocol which would allow individuals to take complaints in their own right.
The social model of disability is in contrast to the individual or ‘medical model of disability’ in which the fault or problem of disability resides in the individual person. People may therefore be seen as heroic or tragic in dealing with their ‘brokenness’, while full access to citizenship remains an individual’s problem rather than an issue for all of us. The social model of disability was developed and named by disability activists themselves following the general turmoil of the 1960s and 70s. There have been theoretical challenges to the model since but the basic question remains, is disability a personal problem or a collective challenge? Our policy rhetoric aspires to inclusion for all citizens.
In contrast to New Zealand disability policy being nominally based on the ‘social model’, operational policy – disability support and services from the state ‒ is often dependent on a variety of narrow and sometime contradictory eligibility requirements based on a medical model. Disabled people and their families would typically interact with and navigate through numerous government agencies depending on the age of the person or the hour of the day. For example the Ministry of Health provides disability support services to people with certain categories of impairment under 65 via a Needs Assessment and Service Coordination model while District Health Boards (DHBs) have the responsibility for those over 65 and those with mental health conditions, although some services stop for those aged over 18.
The Ministry of Education has a different set of criteria for special education support for those in early childhood and school. Both the Ministry of Education and the Ministry for Social Development deal with transition from school to day programmes or further training while Work and Income manages the two main benefits: Jobseeker Support (for those deemed capable of paid work for more than 15 hours a week) and Supported Living for those not, as well as the Child Disability Allowance (for parents of children under 16) and the completely different Disability Allowance (for adults over 16). If the impairment was caused by accident in New Zealand ACC is the funder.
So it is not surprising that there is considerable confusion about disability support and services, even for getting a diagnosis or assessment. Many Government agencies now require online interactions which are particularly difficult for those with vision impairment, limited communication skills, without access to broadband, a cellphone or transport. Over the years there have been several attempts at cross-government cooperation and a Chief Executives group was established to steward this. Many in the sector have asked for a ‘one-stop’ Disability Ministry to coordinate support and services (on the grounds that disability is not merely a health or welfare issue).
Despite the confusion, things are better than they were a generation ago and expectations for participation in citizenship have increased. Until the 1980s disabled children were often sent to residential institutions away from their families and with few rights. The last institution, the Kimberley Centre, closed in 2006. The 1989 Education Act legislated for the right for disabled children to attend their local school on the same basis as other students, although if parents preferred they could opt to stay in a specialist unit until they turned 21. Special Education 2000 (a 1995 Government policy) was designed to encourage mainstreaming, although with insufficient resources to meet support needs. The 1993 Human Rights Act included disability. Employment opportunities were mainly in sheltered workshops without employment rights or proper wages until the 2007 Repeal of the 1960 Disabled Persons Employment Promotion Act. New Zealand Sign Language became an official language in 2006
A decade of active disability policy followed the election of the Labour Alliance government in 1999 and the installation of Ruth Dyson as the first minister. The landmark NZDS came from the sector itself, and was followed by several related reports such as To Have an ‘Ordinary’ Life for adults with intellectual disability who were no longer living in institutions. In 2007 New Zealand won the international Roosevelt award for disability achievement. Local disability activists partnered with policy people for a significant role in the development of the CRPD. However, concerns about the quality of disability care led to a Parliamentary select committee inquiry which reported at the end of the Government’s term in 2008.
The new National Government’s response was a 2010 Cabinet Paper proposing a ‘New Model’ of disability support that has led to several demonstration projects based on principles of personal choice and coordinated support. These include a Local Area Coordination project in the Bay of Plenty, Enabling Good Lives (for high needs disabled school leavers in Christchurch) and Choice in Community Living in two centres to help disabled adults into supported independent living. However, none of these projects have been rolled out nationwide. Tariana Turia as Minister for Disability Issues 2009-2014 provided funding for disabled people’s organisations (DPOs) to monitor the implementation of the CRPD. DPOs were also charged with producing a Disability Action Plan in partnership with the Office for Disability Issues and the Chief Executives Group. The latest Minister, Nicky Wagner, was appointed at the end of 2014.
A major problem remains the funding discrepancy between Health and ACC which shows up starkly in funding and support comparisons between, for example, an adult using a wheelchair as a result of accident in contrast to a similar impairment as a result of a congenital condition or illness.
There have been several court cases taken by citizens against the government in the last 20 years. The Daniells case was the response of a group of parents against inadequate educational provision for their disabled children under Special Education 2000; the parents eventually won. Now the IHC is in the process of taking a case against the Ministry of Education alleging discrimination against disabled students. A decade of successful litigation by parents seeking payment for their disability care duties resulted in the 2013 Funded Family Care policy. However, the provisions are minimal, and eligibility tight. A maximum of 40 hours per week on the minimum wage for carers of adult children (not spouses) is allowed with the disabled person becoming, in effect, the employer. As extra insult the Act denied any future complaints pathway via human rights legislation. This is another area where ACC and Ministry of Health provisions vary significantly as ACC does not limit payment for family care.
Another unresolved problem remains the issue of historic abuse of those made state wards in the past (for reasons including disability) who were institutionalised in residential schools, psychopaedic hospitals or other environments including inappropriate foster care. Some cases have been heard and resolved through a variety of initiatives including a process in the Ministry for Social Development and an independent Confidential Listening and Assistance service, but these are time limited and slow. Meanwhile reports of ongoing abuse of disabled people continue with the Ministry of Health reviewing some of its processes following a damning 2013 report. With the Australian and UK Governments now investigating historic abuse, the case for a major New Zealand enquiry is becoming urgent.
Disability policy in New Zealand is complex involving numerous government agencies and providers, various contractual arrangements and assorted eligibility requirements. Such policy affects a large proportion of our population including many who are vulnerable or experiencing significant disparities. Yet policy and public focus is intermittent and fragmentary. We should, as a country, be doing better for our disabled citizens so that they get the quality of care and respect that they deserve.