Having reflected on the emergence of the more immediate implementation outcomes for disabled people, the report now considers the extent to which these positive changes are resulting in disabled people perceiving that they are receiving support to reach their optimum level of participation within their communities. Consideration is also given to the diverse needs of disabled Māori, Pacific people, children and women.

Detailed in the outcomes framework are a series of quality of life measures which are the basis for measuring the extent to which the daily experiences of disabled people have changed since the 2001 introduction of the Disability Strategy. These areas are:

• Citizenship: “I participate in my community”.
• Health: “I feel healthy and well”.
• Education: “I am learning new things”.
• Employment: “I have meaningful employment”.
• Income: “I can pay for things”.
• Housing: “I have my own home”.
• Transport: “I can move around”.
• Recreation: “I have fun”.
• Relationship: “I have friends and family”.
• Value: “I feel valued”.

It became apparent throughout the interviews that disabled people in general feel a sense of frustration and disappointment at the slow pace of change they perceive in their lives. This disappointment is, in part, reflective of the increasing expectations that disabled people have to live an ordinary life, and is, in itself, a positive outcome resulting from the implementation of the Disability Strategy.

Citizenship: “I participate in my community”

Outcomes related to upholding citizenship are associated with how well disabled people are able to participate fully within their communities. Three objectives of the New Zealand Disability Strategy contribute to citizenship outcomes. These include: objective 1, encourage and educate for a non disabling society; objective 2, ensuring rights for disabled people, and; objective 5, fostering the leadership of disabled people.

Many participants felt more empowered in their choices to participate in society, a sense that some attribute (at least in part) to the Disability Strategy. However, there is also recognition that full inclusiveness is a long way off, and barriers to participation continue to exist. There was an overall feeling that to improve outcomes a substantial shift in societal attitudes is required.

“In the past there was an attitude that you would inherently expect women, Māori, all these people to be underachieving relative to the dominant people. I think that [society] expects disabled people to be inherently underachieving, under participating or being undervalued and under included. I think even amongst a lot of bureaucrats who understand the language of inclusion and can talk it, there is still that fundamental belief that we still expect you to be included in participation at a lower level.” (Provider)

Disabled people acknowledge they have a leadership role in educating wider society, advocating for what they require and ensuring their rights are met.

Health: “I feel healthy and well”

Objective 8, action point 4 of the Disability Strategy seeks to ensure that disabled people have access to appropriate health services within their community. In 2001, the Disability Strategy was launched in a context in which nearly 15% of adults and 17% of disabled children reported an unmet need for some kind of health service. Additionally, the 2003 report, ‘To Have an ‘Ordinary’ Life’ recognised that many intellectually disabled adults were unable to access the health services they need, and faced immense barriers in getting information, treatment and prescriptions to meet their needs.

In 2005 stories of disabled people contributing to Life is for Living reveal a mix of experiences. They suggest that for many disabled people, there is ongoing difficulty in accessing health services that enable them to optimise their personal health and wellness.

“Managing my health can be really difficult so sometimes it’s just too much hassle to do anything if I’m feeling unwell. I would like to access better health care to learn how to manage my health better and make the most of the time when I’m feeling good…It would be good to have support in the form of decent affordable health care and a doctor who could work with me in getting my health back.” (Person who experiences mental illness)

Education: “I’m learning new things”

The attainment of good educational outcomes is strongly associated with future wellbeing, particularly in the areas of acquiring meaningful employment and good income-building opportunities. Historically, educational outcomes for disabled people are significantly lower than those of non-disabled people. In 2001:

• 39% of disabled adults stated they had no educational qualification, compared with 24% of non-disabled adults
• 34% of disabled adults reported that their highest qualification was a school qualification, and a further 27% reported a post-school qualification. The comparable figures for non-disabled adults were 42% and 34% respectively.

Objective 3 of the Disability Strategy seeks to overcome these inequalities by requiring the provision of the best education possible for disabled students. To achieve this, a greater degree of responsiveness to disabled people is essential. In spite of all the activity and changes made by government agencies in this area, disabled students, and the parents of disabled students involved in primary and secondary education since 2001, suggest this has yet to occur

“There is this huge gate-keeping around both education and disability support, you have to tell a sad story, you have to paint the biggest tragedy to get a basic level of resources and you feel like you are competing with other people’s resources and the people doing the assessment actually have to become a gatekeeper, they have to mistrust what you are saying to some degree…” (Parent of a disabled child)

Feedback from students within the tertiary sector indicates that in this area a greater degree of progress is felt to have been made.

“The Disability Support Services at university are fantastic. I don’t think I would be where I am now if they hadn’t supported me.” (Tertiary student with a neurological impairment)

Employment and Income: “I have meaningful employment and I can pay for things”

In order that disabled people live lives that are as financially independent and sustainable as possible, objective 4 of the Disability Strategy requires the provision of opportunities in employment and economic development. In 2001, an estimated 44% of disabled adults were in the workforce (i.e. they were either “employed” or “unemployed and actively looking for work”). In contrast, 74% of non-disabled adults were in the workforce.

In terms of income levels, the personal incomes of disabled adults were lower in 2001 than non-disabled adults. 56% of disabled adults reported gross personal incomes less than $15,000 for the year ended 31 March 2001, compared with 40% of non-disabled adults. For the same period only 6% of disabled adults had incomes of $50,000 or more, compared with 13% of non-disabled adults.

The experiences of disabled people in the workforce vary according to factors such as age, education level, complexity of impairments and whether they work within the disability, public or private sectors. For many, there is a very real sense of improvement, including increasingly positive employer attitudes towards engaging disabled people into paid work, and increasing responsiveness of private sector employers to disabled people’s needs.

“There are some accessibility barriers in my workplace… When we moved into the building it didn’t have wheelchair access. CCS assessed it all and worked out the best solution to get me in. Alterations were made within a week. I was really impressed with the way my employer was totally co-operative and had my best interests at heart. I think it would be a different story for some smaller companies with less money as it is a significant cost output.” (Person with mobility impairment)

There is, however, also a perception that improvements in employment opportunities are greater in main centres than rural areas, and that for some, such as people with high and complex needs and people with intellectual disabilities, finding employment opportunities remains challenging.

“My employment will always be governed by my ability to manage my health in negotiation with employers.” (Person with experience of mental illness)

Comments published in Life is for Living 2005 suggest that low incomes continued to place a major strain on the lives of disabled people, particularly those with families, and for parents caring for disabled children.

“Sadly our family issues often revolve around finances, and I worry about how this will affect our girl’s futures. We live on benefits – an Invalid benefit, a Disability allowance and a Child disability allowance. Money is very tight.” (Parent of disabled child and partner of disabled person)

For young single disabled people this appears to be less of an issue, perhaps reflective of their younger life stage.

“My disability has no impact on my finances, there are no barriers to stop me from managing financially – it’s just a teenage thing.” (Young person with mobility impairment)

Housing: “I have my own home”

The housing actions underpinning objective 8 of the Disability Strategy, supporting quality living in the community for disabled people, relate to the need to increase the availability of affordable, good quality housing which enables access to services. In 2001, 96% of disabled people lived in households (rather than residential care), and many reported an unmet need for special features to enter, leave or for use within their homes. One of the most common reasons for not modifying their homes was that it was too costly or they could not afford it.

Research published in 2007 by the Centre for Housing Research New Zealand reported that access to comfortable, appropriately modified housing makes a substantial difference to the quality of life experienced by disabled people. Examples of poor impacts highlighted in the report include disabled people being unable to appropriately care for their children because of narrow doors and passageways, and disabled people fearing for their safety in the event of a fire.

Many disabled people report that outcomes relating to housing remain poor, while for others the chance to set up their own home is both exciting and challenging. The following are examples included in Life is for Living 2005:

“The noisy location of our flat contributes to me feeling unwell sometimes. It would be better for me personally to live in a quieter neighbourhood but as we are restricted financially we have to live where the cheap flats are. In the future I would like us to own our own house ...I’d stay around the same neighbourhood, but just on a quieter street in a much bigger place.” (Person who has experienced mental illness)

“Three months ago my friend who is also in a wheelchair and I moved into a Housing Corporation house in Whangarei. It’s new and suitable for us wheelchair users, and it’s rented to me – my friend pays board to me. Setting up house has been heaps of fun and it’s great to do things our own way.” (Young person with mobility impairment)

Transport and environment: “I can move around”

Furthering the actions underpinning objective 8 of the Disability Strategy, supporting quality living in the community, involves making sure that disabled people are able to move around the community, and that transport is available that meets nationally consistent accessibility standards. Having accessible public transport is crucial to enabling full participation in the community.

Disabled people participating in the review commented that while progress with accessible transport is being made and outcomes are improving for many, particularly in urban areas difficulties continue to exist in accessing public and using private transport. Many also commented that progress following the release of The Accessible Journey report has been disappointingly slow.

“There is some progress in transport… there are lots of low floor buses. (Person with sensory impairment)

“I bought a motor scooter so that I wouldn’t have to catch a bus, because catching a bus was causing so much stress. … Bus drivers need to be trained to deal with people with impairments.” (Person with neurological impairment)

Recreation: “I have fun”

Having opportunities to participate in arts, sporting and cultural activities are highly valued by disabled people for the same reasons they are highly valued by non-disabled people. They offer the chance to be competitive, physical, part of a team, to develop relationships and have fun. Supporting disabled people’s participation in recreational and cultural activities is part of the aim of objective 9 of the Disability Strategy.

Between 1997 and 2001, 63% of disabled children, young people and adults participated in some form of physical activity, compared to 68% of the general population.

In general, sport, recreation and culture were seen as important to disabled people participating in the review. Comments suggest that participating in sporting and recreational activities adds tremendously to the quality of life experiences of disabled people. However, discussion was limited, as participants focussed on more critical areas for change, such as health and education.

“For blind people, sport offers the same challenges and opportunities as for sighted people – the opportunity for exercise, camaraderie of team sports and as little or as much competitiveness as you want. It’s about a group of people in a team interacting with the common goal of the team doing well.” (Person with vision impairment)

Relationships: “I have friends and family”

Objective 9 of the Disability Strategy is also about supporting disabled people in developing relationships, and making choices about sexuality and reproduction.

The development of strong personal relationships is a recurrent and important theme in the stories contributing to this review. For many disabled people, having strong family and friendship ties is an ongoing source of support for them as they live their daily lives in a disabling society. The affirmation of the benefits of strong family ties and the effects that impairments can have on relationships in general were thought about deeply, as were the effects of impairments on children and in building their own family lives.

“I would love some assistance so that I can take my children to the park. I can do a lot more with my children in my own home environment, but remove me from that and if I want to do something in my community that is really hard work.” (Person with vision impairment)

Value: “I feel valued”

The Disability Strategy has a vision in which a fully inclusive society highly values the lives of disabled people and continually enhances their participation. This vision incorporates both the daily aspects of value, for example in the way that employers, landlords and teachers treat and respect their employees, tenants and students, as well as wider aspects of value, such as questions of rights to life and bioethical debates.

This review focused on questions of value as experienced in the daily lives of disabled people. Implicit in disabled people’s comments was a sense that participants felt undervalued by wider society and were at times subject to negative sentiments and in some cases discrimination.

The review did not actively seek to address wider issues of value, including questions relating to diversity, identity and bioethical debates, although some comment was made relating to these issues, by those involved in advocacy on these issues.

“There hasn’t been a shift in values around [bioethical debates] and we haven’t been able to get the voice of people with Downs Syndrome into that debate, it is considered not of value by those making the decisions, in fact there isn’t anybody I think with a congenital impairment of any kind around the discussions. It’s those fundamental value of life issues [that] haven’t been taken on board.” (Disabled persons’ membership organisation)

Supporting changes to life outcomes: Disability supports: “I have the supports to participate”

Objective 7 of the Disability Strategy seeks the creation of long-term supports centred on the individual. This objective includes actions related to securing long-term, assistance, equipment and rehabilitation related supports to allow participation. In 2001, the Disability Strategy was launched into a context in which:

• 48% of women and 39% of all disabled men required assistance of some sort.
• Slightly more than 33% of disabled adults required specialised equipment.

The stories of disabled people who contributed to this implementation review reveal a mix of experiences:

“We both have a single impairment and we deal with five support people. We have two kids and we deal with at least three service providers for them and that is single impairment. I imagine for people with multiple impairments it just would be ridiculous.” (Person with vision impairment)

Scorecard for changes to life outcomes

For all life outcome areas, disabled people, disabled persons’ membership organisations and families/whānau reported a mix of both positive and negative effects. However, overall there was a sense that things are getting better, although there is still a long way to go before disabled people report that they are living fully inclusive lives.

It is difficult to distil the findings of these interviews into a brief statement but, in general, the impacts of implementation activities by government agencies have been noticeable across most areas, and have contributed to generally positive effects for disabled people. However, there is a major gap between the expectations of disabled people and what they perceive to be the actual outcomes. This gap in part reflects high expectations about the rate of change that could be achieved by the Disability Strategy. It may also reflect the aspirations of those with disabilities increasing over time.

Addressing the needs of diverse groups

Objectives 11 to 15 of the Disability Strategy specifically target and promote the participation of disabled Māori, Pacific peoples, children and young people, disabled women and the families, whānau and carers of disabled people. These objectives acknowledge that Māori, and Pacific disabled people, disabled women and disabled children may experience a dual form of discrimination. Participants in the review suggested that, in general, little has been done to address the additional needs of these groups.

“I don’t think there has been a great response to women with disabilities, and while I haven’t looked at it in the same [way] I would imagine that they are probably a bit shy on Māori and Pacific peoples as well, but women with disabilities, I don’t think they’ve really got to grips with it….[We need] clarity about what the priorities are and who should be working on it and [there’s] not a lot of visible evidence of what the issues for women with disabilities actually are.” (Disabled person)

Participants in the review identified a number of areas where they felt disparities between groups of disabled people were beginning to emerge:

• The experiences of disabled people who are new migrants from Pacific and other nations, compared to disabled people who are long-term resident in New Zealand. Comments suggest that new migrant groups often have a differing perspective about disability than that embedded in the Disability Strategy. These cultural differences lead to a lack of understanding between agencies, disabled people and their families, and result in limited access to information and available supports.

“Small migrant groups, [bring different ideas about disability with them]. You know in some places there are no services at all and basically, the onus is on the family and it’s your responsibility, it’s your burden to care for your own and that ethos is still very strong there. Yet when [they] come here, the paradigm is shifted, yet agencies don’t understand the paradigm where they’ve come from. So all the policies and all the planks are built in a way that meets mainstream needs but doesn’t factor these people in.” (Central government)

• Disabled people who are skilled, educated and have financial resources available to them are better placed to take advantage of the growing opportunities available (e.g. in respect to employment and technology).

“I guess one thing I’d like to bring in is there could be a real danger that we generate a middle class disabled group and another group of people who don’t necessarily fit in to that, and are excluded…There are people who are not as articulate or need more support, and they still continue to be excluded and I think that needs to be safeguarded against.” (Disabled persons’ membership organisation)

• Disabled people in urban areas have better outcomes than disabled people living in provincial/rural areas (e.g. in respect to accessible transport and access to services).
• Outcomes for people with physical and sensory impairments continue to be better than outcomes for people with complex impairments or mental illness (e.g. in respect to employment).