The Disability Strategy is a “whole of government” strategy because disabled New Zealanders will potentially interact with every government department.

If disabled people are to have ordinary choices and responsibilities in their lives they need better access to education, employment, decent levels of income, housing, transport, health care, communication and information and recreation, and they need the freedom to make lifestyle choices, including choices about culture and relationships.

Work to enhance access across any of these areas of life may involve the provision of individual support services, individual modifications to the environment, or may be about changing aspects of the whole environment or society to be universally accessible.

Any particular activity is likely to impact on more than one area. To ensure comprehensive coverage, however, this chapter considers each area of life as a discrete setting.

Ordinary choices and responsibilities in all areas of life

Objective 3: Provide the best education for disabled people

This section on education contains three indicators. The first focuses on an aspect of the compulsory school sector, the second on adult participation in education and the third on the overall education achievements.

Providing the best education for disabled children

Positive and appropriate childhood experiences can help to build the expectations as well as skills of young disabled people to lead a life with the kind of ordinary opportunities and responsibilities most of us expect. The aspirations for children with special education needs are the same as for all children, including: “to reach their potential; to feel valued and accepted; to have the opportunity to experience success; to feel included, not marginalised; to enjoy a broad range of experiences and to enjoy quality learning experiences...” (LetsTalk, 2005).

Presence and participation in the classroom is a first and essential step to meeting these goals and improving the education outcomes of disabled children.

Indicator 8: Percentage of disabled children participating in some aspect of mainstream education.

The debate over what are the best settings for education continues, with views divided on whether special schools, units or regular class settings best meet children’s needs. However, we can be sure that all disabled children need at least some time in mainstream settings that are inclusive and accessible. This ensures that all children have opportunities to interact with their peers. This idea is supported by the United Nations Committee on the Rights of the Child, which recommended, in October 2003, that New Zealand better integrate disabled children into mainstream education and other aspects of society.

Measurement of this indicator will not tell the whole picture but an increase in it over time will indicate that more disabled children are being included in mainstream education and gaining the life experiences and skills that go along with that.

Sam goes to our local primary school and loves socialising and being at school. He is doing very well there when he is well. Sadly this winter term he has had about two-thirds of the term off sick. I taught the teacher aide how to deal with any medical emergency he might have. The school allowed me to be part of the interview process for the teacher aide and I feel comfortable with her. She is an older woman who has children of her own. She is brilliant with Sam, just like a second mum. We are so lucky because she is going to the intermediate with him next year. The school is magic; I am always singing its praises. Help is there for Sam but he is not cushioned or given an easy ride. They understand his capabilities. It’s the whole school climate – the kids there are amazing – no bullying throughout the school. The staff and pupils are just great.

I am fearful of Sam’s transition into a much bigger intermediate school next year. At present Sam can move around the school as he can walk about 50 metres on the flat without a rest. At the intermediate, distances are much greater and he will have to use a wheelchair and lose some of his independence. It will be a big thing for him, as well as facing a new group of kids who don’t know him.

Sarah and her great family, Life is for Living, to be published at www.odi.govt.nz

It will also be important to measure the inclusiveness and effectiveness of the education received by disabled children. Group Special Education is developing measures for presence, participation, quality learning and achievement for an outcome framework. In future it should be possible to integrate the measures they devise with that of the Disability Strategy. The information associated with indicator 10 will also provide some insight into how effective education services have been for disabled children and youth.

My schooling was not fun and I try not to remember it. When I was starting school my parents were told I didn’t need glasses and I got off to a really bad start. Later on, when I had glasses, I sat in the front of many classes in many mainstream schools but I had no extra support and I missed out on a lot of learning opportunities. We later found out I could have gone to a school for the blind but I went to a state secondary school and got some support. I did not achieve anything like my potential and left with quite low self esteem. I do hope it’s a different reality for mainstreamed students today.

Gail, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

The 2001 Disability Survey found that:

• approximately 97% (71, 600) of disabled children aged between 5 and 14 years who were living in households, were enrolled in some type of primary or secondary education
• 74% (53,300) of disabled children attended only mainstream classes; a further 16% (11,400) attended “mainstream” classes and a special unit.

In 2004, Group Special Education engaged with 5,000 parents, educators, students and other interested parties through 395 community meetings. The findings are published in a series of reports at www.minedu.govt.nz/goto/LetsTalk. There was consensus that there is a need to improve:

• funding to support all aspects of special education and accountability for the resources in special education
• planning and processes so support is available as children move through the system, and encourage thinking ahead and preparing for adulthood
• training of all staff, focusing on attitude change and skill building for those working with students with special education needs
• early intervention programmes
• co-ordination and co-operation of all those working with children with special education needs
• information on how the whole system works and how to access programmes and services
• communication between parents and those providing services
• relationships and networking between all the groups working in special education, particularly when it comes to access to schooling, services and resources
• the range of learning settings available and in some cases more options services for Māori and for Pasifika.

I investigated a number of special schools and believed that he would be best placed in a special school a 30–40 minute drive from us. We enrolled him there and it has proved to be just the school for him, the teachers have transformed him. It was a difficult first year however, as he had to learn new behaviours. On regular occasions to begin with he spent time in a time-out room. However, the teachers liked him, and saw beyond his behaviours and recognised his frustrations and developed ways to deal with him. He learned not to hurt other children and adults. We so appreciate his teacher and the school that another parent and I nominated her and the principal for the Multi Serve Education Trust awards last year, but sadly they did not make the finals. The school has been wonderful in building positive relationships with Mark and with the families of their special needs students. We have to pay $40 per week to subsidise Mark’s taxi fares to school as he does not attend the nearest special needs class or school – but finding the right school placement is well worth this.

Mark’s family, Life is for Living, to be published at www.odi.govt.nz

The 2001 Disability Survey showed that most caregivers of disabled children were able to enrol their child in the school of their choice. However, 7% (an estimated 5,000) said they had not been always been able to do so. The most common reason reported was that the school was unwelcoming.

Promoting opportunities for education for disabled adults

Indicator 9: Percentage of disabled adults participating in formal education.

Greater participation in tertiary study and other adult education is an essential part of improving education, employment and economic outcomes of disabled people. Participation can range from university courses or apprenticeships to finishing school or tailored courses to improve life skills, as long as the focus is on education outcomes and not “day care”. Improvement will be evident when the percentage of disabled adults who are enrolled in formal education has increased.

I finished college when I was 16 because I had to fight for so many things around schooling. I basically got tired and left to do a course instead.

Rebecca, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

The 2001 Disability Survey found that:

• an estimated 55,800 disabled adults living in households (9%) were enrolled in formal education
• 25% of these disabled adults were enrolled in polytechnics, 22% were enrolled in universities, 20% in secondary schools and 8% in private training establishments.

Ensuring effective education for disabled people

Indicator 10: Percentage of disabled people with a school or post-school qualification.

The attainment of formal qualifications will improve a disabled person’s ability to compete in the labour market. If disabled people achieve a level of qualifications similar to non-disabled people this will be evidence that the education system has been effective for disabled people on an equal basis with others.

Latest trends and data

The 2001 Disability Survey found significant differences in education outcomes for disabled people compared to people without impairments, as shown in the table below.

2001 Disability Surveys	Disabled adults in households	Non-disabled adults
No educational qualification	39%	24%
Highest qualification a school qualification	34%	42%
Post-school qualification	27%	34%

I can only do my studies part-time. The Disability Support Services (DSS) at university are fantastic. I don’t think I would be where I am now if they hadn’t supported me. If I have a bad day and I am at uni, there are people there who will help me out. There is a bed there where I can go and have a rest. The DSS will come and advocate for me with course co-ordinators – this is really important for me because the psychology course co-ordinators are the most sceptical – they know so much about the brain. One of my co-ordinators questioned why I was getting support but once DSS came and sat down with me and spoke to the co-ordinator about why, then he couldn’t do enough for me. I had to explain myself because my disability is hidden, my exam results were good and I looked normal. That was frustrating for me…

Miranda, Life is for Living, to be published at www.odi.govt.nz

Activity to improve education services for disabled people

The Ministry of Education reports a number of initiatives to improve delivery of education services in New Zealand:

• Budget 2005 announced an increase of $30.7 million over the next four years for special education services. Of this $16.9 million will go to expand special supplementary learning support, $9.8 million for teacher aides and $4 million to develop effective special education assessments.
• Group Special Education has been preparing a set of local profiles of services and resources for each of their 16 districts. The information will provide a basis for more effective planning of local services. A newsletter, Let’s Talk Special Education, was launched to provide information about national Group Special Education initiatives.
• An action plan is being developed to set the strategic directions related to education for children and young people with special needs. This first action plan focuses on improving the core services that Group Special Education is responsible for.
• A transition website has been launched to help ease the transition from school to work/further education/the community for young disabled people. It was designed with input from Emerge Trust and IHC (www.transitions.org.nz).
• The Advance Centre of Deaf and Hearing Impaired Tertiary Students is now in operation and gives deaf and hearing impaired tertiary students in Auckland access to support, resources and services. These include training for support staff, advice on equipment for studying, information to teaching staff on student needs and access to bridging and transition programmes that assist participation in tertiary study.
• The New Zealand Code of Practice for an inclusive tertiary educational environment for students with impairments has been launched. The code is designed to assist tertiary education providers achieve a fully inclusive environment by identifying and removing the barriers of campus life. The code was developed by ACHIEVE, a national post-secondary education disability network.
• The Ministry of Education has completed a literature review and developed a project plan for improving information and early action to address barriers to learning faced by children with additional support needs.

ACHIEVE was established to ensure equal opportunity and access to post-secondary education and training for people with impairments. The national network advocates and lobbies for people with a range of impairments who are transitioning into or studying in post-secondary education or training; for example at a university, polytechnic, private training establishment, wānanga or college of education.

Objective 4: Provide opportunities in employment and economic development for disabled people

Promoting employment opportunities for disabled people

Indicator 11: Percentage of working age disabled adults who are employed.

Access to quality employment is a priority for the disabled population. It is seen as key to breaking the cycle of deprivation and creating a more inclusive society. Improvement will be evident when the proportion of the adult disabled population aged 15–64 who are employed (full or part-time) has increased.

I was a successful chef for many years but eventually I was unable to maintain a consistent mood in order to remain employed. My employment will always be governed by my ability to manage my health in negotiation with employers.

I would love to be able to support my family better, but I don’t want to pressure myself about it. I’m about to begin some voluntary work with Amnesty International. I have not worked in four years so it’s a bit of trial and error. In the future I hope to work full-time…

I’m unsure about what resources or support I would need to achieve this. I guess someone who could facilitate (advocate) between employers and myself would be best.

Craig, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

The 2001 Disability Survey found that 58% of disabled people aged 15–64 living in households were employed (full and part-time). Six percent were unemployed and actively seeking work, while 36% were not in the labour force.

Twenty-two percent of unemployed disabled adults aged 15–64 had been looking for work for more than a year.

The 2001 Survey also observed significant differences in labour market outcomes for disabled people compared to people without impairments. The difference is particularly pronounced for full-time employment outcomes, as shown in the table on the following page.

2001 Disability Surveys	Working age disabled population	Working age non-disabled population
Any employment	58%	77%
Full-time employment	29%	65%
Benefit receipt	30%	11%

Activity to promote employment opportunities for disabled people

This area of life has seen a very significant increase in activity for disabled people since the launch of the Strategy in 2001. This is partly because of the current shortages of skilled labour. The government has used this shortage to motivate employers to engage in discussions about why and how they could better harness the untapped potential of disabled people.

• The Department of Labour focuses on improving the overall employment environment. It has launched PeoplePower: a project highlighting the employer benefits of increasing diversity in the workforce, including disabled people. The Department has produced a list of “frequently asked questions” for employers regarding the employment of disabled persons. The Ministry of Social Development and the Department of Labour held a summit for employers in March 2005, hosted by the Minister for Social Development and Employment and the Minister for Disability Issues.
• Current development of the Work-Life Balance programme, which promotes flexible work environments, could also improve employment options for disabled people.
• The Pathways to Inclusion Strategy launched in 2001 aims to improve the quality of employment opportunities for disabled people. It promotes a shift in emphasis within some vocational services away from sheltered work and day activities to supporting disabled people to have meaningful participation in their community and into real jobs (although sheltered workshops remain an option in some circumstances). In the 2004–2005 year the initiative helped 1,100 disabled people into more open employment.
• An important element of the Pathways to Inclusion Strategy is a repeal of the Disabled Persons Employment Promotion Act 1960. The policy around the repeal includes a transition period (2001 to June 2007) for sheltered workshop providers. As part of this process Department of Labour officials participated (over the last year) in a variety of workshops, presentations, conferences, consultations and discussions with advocacy and disability sector groups.

Virginia says “I work in the grocery department of the local Countdown supermarket. I’ve been there four years and I’m one of their best workers. I work from Monday to Friday, from 9am–3pm. I get heaps of work experience. We try to get more people like me to get out there and get work experience. Someone comes once a week to see us doing our jobs and checks how we are going. In Countdown we see lots of people with special needs and I help them. Countdown has disabled car parks for people in wheelchairs but sometimes it’s hard for people in wheelchairs to get out when there aren’t ramps on the trains and there aren’t enough taxis. I like my work.”
Douglas says “Virginia is a first class worker and I’m really proud of her. I work too. I’ve had heaps of jobs – I used to work at Pizza Hut, now I’m at KFC. I do the rubbish outside. I keep it all tidy out the back and I also do the potatoes and gravy.”

…Caregiver Debbie says “Douglas only works two and a half hours a day so he really has to watch his spending. He really loves spending money. He loves going to the shop and buying muffins.” Douglas says: “I spend some of my money on my art stuff. Virginia likes to save her money for going on holiday”.

Virginia and Douglas, Life is for Living, to be published at www.odi.govt.nz

The Ministry of Social Development provides general assistance to disabled people to help address barriers and move people towards sustainable employment. They are continuing to develop the New Service for Sickness and Invalids Benefit Recipients. Budget 2005 allocated an extra $27.7 million over the next four years to this development. Initiatives include:

• support for employers so they can employ people with ill health or disabled people
• changes to the 15-hour and stand-down rules to make it easier for people receiving the Invalids Benefit to move into work
• a new and better case management model
• an extension of employment related support funds for disabled people (administered through Workbridge), which are now available to employees in the state sector.

I am hoping to be completely off the invalid benefit and working fulltime. It would help if there was more care in place for my son to enable my husband to get more regular employment as his role is often that of carer. He is self-employed so is able to be flexible in the care he provides for Thomas. Costs of specialist visits for my husband and I, and medication, is significant for us. More spare cash to let us go to the movies or out to dinner once in while would be great, however there are great things we do as a family – like fishing.

Kathryn, Life is for Living, to be published at www.odi.govt.nz

The Ministry of Social Development also provides services for school leavers with high and complex needs. Budget 2005 allocated an extra $9.9 million to meet the growing demand for these services. Transition services that focus on supporting disabled people in the move from school to work and/or community participation are currently being piloted.

• District health boards also fund a range of supported employment options for disabled people. These are provided through the district health boards’ mental health services and contracted non-government providers.
• The State Services Commission runs the Mainstream Supported Employment Programme, a subsidised employment programme for people with significant impairments working with selected state sector organisations.
• The Equal Employment Opportunity Trust and the Human Rights Commission are founding partners of NEON (New Equal Employment Opportunity Network), and four issues of an electronic newsletter, which includes disability-related news, have been published to over 600 subscribers. The network’s next activity is the development of an electronic portal aimed at better connecting people and organisations working to further equal employment opportunities in New Zealand.

Government agencies report that over the 2004–2005 year:

• ACC contracted with the Spinal Injury Trust to provide vocational services for people with a spinal injury in Christchurch area. The service is to be reviewed and, if found successful, will be developed nationally.
• School boards that seek information resources for new trustees from the Ministry of Education are supplied with advice on “Mainstream” placement opportunities in schools. An information handout was distributed to trustees at the annual New Zealand School Trustees conference.
• The Office for the Health and Disability Commissioner has a new policy, where every person identifying themselves as disabled who applies for a job with the Commissioner, and who has the minimum qualifications and experience, will be interviewed. All vacancies will be notified to Ripple Trust and Workbridge.

Ensuring an adequate income level

My disability doesn’t affect my earning capacity and I’m sure it never will, but it does impact on finances. I bought a van recently and I had to get a loan for it because it was wheelchair modified with hoist, hand control etc. The previous owner had it modified for $30,000 – for the modifications alone. I bought it for $20,000. I love it and the independence it has given me, but it annoys me that because I’m in a wheelchair I had to pay out this kind of money. I can’t go and buy a bomb for $500.

Other costs related to my disability are for physiotherapy (yoga, stretching) once a week, home care support services, and gym fees. I go to a gym that’s modified for people with wheelchair disabilities. I receive home care service – a guy comes in every morning and helps me put my clothes on. I can get out of bed, shower and dry myself but I can’t put my clothes on. He comes to the gym with me sometimes as well. It’s a really important service that gives me a bit more independence and I’m really pleased with that service.

Red, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

Many disabled people not in paid employment or in low paid work rely on income assistance to meet the additional disability-related expenses that would otherwise consume their income and erode their standard of living.

A decrease in the proportion of the disabled community reliant on benefits or ACC compensation might indicate increased levels of employment income. However, it could also indicate that disabled people and their families are bearing more disability-related costs themselves.

The 2001 Disability Survey found that:

• almost half of disabled adults aged 15-64 years had incomes of less than $15,000
• 7% of disabled adults received the sickness benefit, 7% received the invalids benefit, 2% the war disablement pension and 2% the special needs grant
• the disability allowance was provided to 13% (84,000) of disabled adults
• 18% of disabled children (16,500) received the child disability allowance while 6% (5,400) received the disability allowance.

Activity to improve the provision of income support

The Ministry of Social Development through its Future Directions Benefit reform is developing proposals for a single core benefit; this is complementary to the work developing a new service for clients currently on sickness and invalids benefits.

One of the goals of the benefit reform is to help beneficiaries successfully make the transition from benefit to sustainable employment; another is to make the benefit simpler by improving people’s access to the correct amount of assistance. It intends to re-focus Work and Income staff on the abilities of people rather than on what they can not do.

Research commissioned into the costs of disability will inform the further development of this work.

Our family issues sadly often revolve around finances and I worry about how this will affect our girls’ future. We live on benefits, an invalid benefit, a disability cost benefit and a child disability allowance. Money is very tight. Our big investment is our house on a bit of land. It’s a good place to live, but I worry about the mortgage payments. We own a van with a wheelchair hoist but it is so costly to run. For example we spend a lot of time and money travelling into a major hospital for specialist treatment for Sam. It’s a three-hour drive and we are doing three to six trips a year. The trips cost. Although we get 20 cents a mile, there is parking for the van, meal expenses etc. I stay with Sam in hospital and do all his individualised care. It’s hard as there are no beds, no meals. At our local hospital if I stay over they manage to give me meals, and it means I can cope better…

On a bad day I worry about the future, the money aspect of it, the fact that I’m getting older and I’m tired by the physical caring, what would happen if I couldn’t do it? I go to our Down Support Group and it’s great to share our concerns, have a laugh and support each other. Our group has widened to welcome other parents with children with severe impairments so I am among others who understand our day-to-day reality, and it helps.

Sarah and her great family, Life is for Living, to be published at www.odi.govt.nz

Objective 8: Support quality living in the community for disabled people

Providing accessible housing in the community

Indicator 12: Percentage of public housing stock that is accessible to disabled people.

Disabled people have a number of extra requirements for housing. These include the need for easy physical access, locations near public transport and/or services, adaptations to meet a variety of needs including for people with sensory, mobility and intellectual impairments. These requirements narrow considerably the market of houses some people can choose from. Put this together with low income levels and there are some very serious housing issues for many disabled people.

Improvement will be evident when there is an increase in the percentage of Housing New Zealand Corporation properties already modified or suitable to be adapted for people with physical impairments.

Latest trends and data

• The Housing New Zealand Corporation has more than 64,000 properties. These include accommodation for disabled people. It is estimated that about 10% of their housing stock is currently modified or suitable to be adapted for people with physical impairments. This includes 2,500 properties (3.8% of all rental stock) that have already been modified.
• A further 3,500 properties (5.4%) are suitable for modification for people with mobility or other impairments. The balance of their housing stock is ill-suited for disability modification for a variety of reasons associated with design and location.

The 2001 Disability Survey found that disabled adults were less likely than adults without an impairment to own or partly own their home. Comparisons between the 1996 and 2001 surveys do not show an increase in housing ownership for disabled people.

Consultation undertaken by the Housing New Zealand Corporation in 2002 in preparation for the New Zealand Housing Strategy found not enough choice in accessible housing for people with mobility and sensory difficulties, and a lack of suitable rental-housing stock, particularly single units for people for whom living alone is the most appropriate option.

The process of the de-institutionalisation of the Kimberley Centre will be complete in 2006; in June 2005 there were 96 people remaining.

Virginia has been living at Debbie and Steve’s place for three years and Douglas for one… They both say: “We like it here. We’re happy and we want to stay here”.
Douglas comments: “We have our moments but everyone has their moments. This house is good. I help with the dishwasher and the rubbish and do the bottles for Steve. Ginnie folds the washing. We’ve all got our chores.”

When comparing their current living situation with their experience in residential care they explained: “In residential care you don’t get to go out much. You get told you are not allowed to do this, you are not allowed to do that. Here we can get out more and do a lot more things. We don’t do any courses or any training but we go to the Cossie (Cosmopolitan) Club once a fortnight. We do lots of dancing at the club. We know lots of people at the club. It’s within walking distance.

“This house is really close to work and close to the shops. On Saturday we go out for lunch or dinner together. Douglas goes to church on Sundays and gives out the pamphlets. Ginny watches Coronation Street. She doesn’t like to miss that. We both love dancing and wining and dining too …”

Virginia and Douglas, Life is for Living, to be published at www.odi.govt.nz

Activity aimed at improving housing choices for disabled people

In May 2005 the New Zealand Housing Corporation launched Building the Future:

The New Zealand Housing Strategy, which outlines a broad approach for lasting, positive housing solutions for families and communities, including disabled people. The Strategy includes specific activity related to improving housing choices for disabled New Zealanders, such as promotion of universal design principles.

The corporation continues to provide a “Suitable Homes Service” to meet the housing needs of people with physical impairments:

• over the last year the service assisted 361 people into modified homes
• an additional 126 units were made available to the social housing and disability sector through the provision of loans to community-based organisations and local councils
• 19 houses were provided to support the de-institutionalisation and resettlement of former Kimberley residents.

A total of 406 properties were modified during the year. Modifications are done on a case by case basis to suit the specific needs of the tenant where appropriate housing is not locally available. All disability modifications comply with New Zealand Standard 4121: Code of Practice for Design for Access and Use of Buildings and Facilities by Disabled Persons.

The Housing Corporation’s development guide applies to all new and modified housing to ensure that increased housing is accessible to disabled people or requires only minor modifications to be made suitable; for example, many units in new post-family housing developments have no internal stairs, have level access or access by lifts.

The Corporation worked with health agencies and service providers to establish a not-for-profit disability sector housing association in Auckland. A peak body (Community Housing Aotearoa Inc) was established through the provision of funding and support to support housing providers in the social housing and disability sector.

Community trust management and ownership of social housing in Kaipara

There is an identified need for low-income housing catering for disabled people and elderly people in the Kaipara area. The Kaipara has above the national average of people over 65, and the mean income of the area is $4,000 to $5,000 below the national average. There are an identified 477 disabled people in the Kaipara area, with 386 people receiving the invalids benefit in the Dargaville central area.

The Kaipara District Council decided community-based organisations could better provide for social housing needs. They invited local community organisations to tender for the management and eventual ownership (within five years) of 34 self-contained housing units in Dargaville and Ruawai. In 2005, the Kaipara Community Health Trust won the tender with the intention of renting the units to low income disabled and elderly people.

An assessment of the units indicated that modernisation and modification was needed to make the units accessible for elderly and disabled tenants. The work includes installing wet shower areas, kitchens specifically designed for wheelchairs, decks to extend living spaces, off-street parking including parking for mobility scooters and, on one site, paths to join units to the nearby community hall.

The trust and the council are working in partnership to access an interest-free suspensory loan of $30,000 per unit from the Housing New Zealand Corporation innovation fund to complete the required work. Specifications for the modifications will be worked out in conjunction with the local CCS.

Funding from Housing New Zealand is also being used to build the trust’s organisational capacity. The trust has 12 volunteer trustees who represent all sectors of the Kaipara community. A full-time CEO has been appointed and the appointment of a housing manager is under way. Strategic and business plans are being developed. Debbie Evans, CEO, indicates that “a key task will be to develop a social housing policy that sets criteria for allocation of units to tenants. The trust sees it has a role in providing support for tenants. We are strengthening our working relationships with all the service providers in the Kaipara area so we can work with them to support our tenants. We want an integrated approach to meeting our tenants’ needs.

“Although the loan for the modifications has not yet been finalised we are placing people in the units. We have three wheelchair users in the units and six people with scooters. At one site the council has made accessible scooter and wheelchair access from the units to the nearby hospital and to the local supermarket.”

Sarah and Bill Grayson have moved into one of the units. Sarah comments: “I’ve recently had my leg amputated and we had to leave our house in Tinopai. Our house was not suitable for a wheelchair and access to the services I need would have been difficult. We are missing our family, but living in town is the best for us now. We don’t know where we would be without these units.”

Gaps and opportunities in housing research

In March 2005 the Centre for Housing Research, Aotearoa New Zealand (CHRANZ) released scoping research on the housing choices for disabled New Zealanders. It identifies a set of housing research projects that address the key issues impacting on housing choices for disabled New Zealanders:

• location-specific data on numbers of disabled people experiencing housing challenges
• location-specific data on the supply of houses already modified for disabled people; and the type of impairments they have been modified for
• the New Zealand Housing Corporation’s public sector housing modification demand and supply monitor covers their own stock only, and should be extended to private and local government housing stock to identify net need for housing modifications.

Based on these needs the following research projects have been proposed:

• upgrade the analysis of households’ data in the Disability Survey and census data incorporated in the database
• current and projected supply of, and demand for, accessible housing in relation to disabled people with physical impairments
• projecting need for new housing or modified housing for the future ageing population
• number of disabled people living in transitory/temporary or inappropriate housing.

CHRANZ intends to commission research related to these proposals.

Improving access to public facilities and environments

Indicator 13: Proportion of public buildings, facilities and environments that are accessible.

Access to public buildings, facilities and environments is critical for participation in work, education, social life, recreation and community activities. Improvement will be evident when there is a marked increase in the percentage of public buildings and facilities universally accessible.

Latest trends and data

Information regarding the rates of universal access to public buildings is not currently available, so progress towards the target is not measurable at this time. However work to improve compliance with the Building Act 2004 and the Building Code is under way.

Activity and opportunities to improve access to public facilities and environments

Building regulation in New Zealand requires that any building work on public facilities ensures that new building or alterations will be accessible to disabled people. This requirement is managed through the building consent processes.
While this system has been in place for many years there are ongoing issues with compliance. However, there has been a number of changes in building regulation over the last year that have provided opportunities to bring improvements in the regulations around accessibility and monitoring compliance.

The Building Act 2004 resulted in dissolution of the Building Industry Authority and the establishment of the Department of Building and Housing as the new administrator.

The new department is required to undertake consultation with the disability sector in matters that affect disabled people. To fulfil this requirement it has established an access advisory panel with members from the disability community.

The panel is required to provide advice that contributes to:

• an enriched understanding of disability issues
• efficient and effective building regulation that supports the development of a universally usable built environment accessible for all, including disabled citizens.

The panel produced two reports in 2004–2005 (November 2004, April 2005). A result of the first report to the Department of Building and Housing was an amendment in April 2005 to the Building Act to clarify that no waivers or modifications relating to access and facilities for disabled people can be granted for new buildings. For existing buildings, such waivers or modifications can be made only by the department’s chief executive.

The Building Act 2004 requires that a major review of the New Zealand Building Code take place by 30 November 2007. This review offers the opportunity to get a number of things right for disabled people and the access advisory panel, along with the Office for Disability Issues, will be working with the department to ensure this happens.

The Association of Credit Unions now provides voice-enabled ATM machines nationwide. The “talking” ATMs have been developed for use by blind and vision-impaired customers and are used by plugging personal headphones into a universal audio jack. The ATM then delivers step-by-step audio instructions to the customer.

Moving around the community

Indicator 14: Percentage of disabled people who are able to undertake independent journeys.

Independent mobility is critical to the full participation of disabled people in society. Appropriate transport is needed for participation in work, education, social life, recreation and community activities. Improvement will be evident when the percentage of the disabled population who are able to undertake short trips without personal assistance has increased.

Access to affordable public transport would be great. My vision impairment means I am not able to hold a driver licence so I rely on my family, friends and co-workers and sometimes the local school bus to get to and from work. I miss my independence sometimes, when I lived in Sydney there was public transport to get around. I am lucky to have the support I do, because if I didn’t, my work and living options would be even less.

Gail, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

Many disabled people rely on public transport as their only means of transport. The main difficulties for disabled people using public transport are boarding and getting off trains, buses or aeroplanes, and inadequate seating. And, because most disabled people are on low incomes, the cost of more accessible transport, such as taxis, is a barrier to their use.

The 2001 Disability Survey found that:

• only 3% of disabled adults and 2% of disabled children had not made any short trips (less than 80 kilometres) in the previous 12 months
• of those who had not made any short trips, most (adults, 91%; children, 75%) indicated their condition or health problem was not a factor preventing them from making short trips
• of the disabled adults able to make short trips, an estimated 49,500 (9%) needed someone to help them. Similarly, of the disabled children able to make short trips, an estimated 9,500 (11%) needed someone to help them on these trips
• amongst adults, the need for help on short trips increased with age, with 16% of adults aged 75 and over able to travel short distances with assistance, compared with 8% of adults aged 15–24 only able to travel short distance with help.

I have spastic quadriplegia and get around in a power chair… I face barriers to the places I can go and how I get there. Transport is a huge barrier. Part of this is an attitude problem – it seems that some service providers don’t really want to provide a service but feel they have to, to be politically correct or because the council tells them they have to.

I catch a bus to and from work every day. When that doesn’t work out I’m in trouble. In fact, last night the midnight bus that I usually catch home from town didn’t come so I had to drive myself home in my chair. To catch a taxi you generally have to book it at least a day in advance so that’s impractical.

The attitudes of drivers are something I have to deal with – I’ve found that most bus drivers, and even some cab drivers, have a begrudging attitude and appear as if they don’t really want to help. You can’t really blame them – they have to put the ramp down for me and that is an inconvenience.

When I go out with friends it’s usually to a bar or to the movies. It can be a pain if a bar has stairs. I sometimes feel like a liability when we go out because the places we can go are limited by me. I sometimes say, “Don’t worry guys, I’ll go home. You guys can carry on.” That doesn’t happen because my friends won’t let it. But in an ideal world everywhere would have ramps and it wouldn’t be a big deal.

Red, Life is for Living, to be published at www.odi.govt.nz

Activity aimed at supporting access to transport

The Human Rights Commission has undertaken an inquiry into accessible public land transport. Submissions were invited (until August 2004). Hearings were held in Dunedin, Wellington, Palmerston North, Hamilton and Auckland. Draft recommendations were developed, stakeholders consulted and further information sought from some participants. The final report recommends direct participation of disabled people in planning processes, mandatory design standards for public land transport premises, conveyances and infrastructure, and service information and industry wide training in disability awareness and disability competency.

The government’s Transport Strategy 2002 includes a commitment to improve the consistency and quality of the Total Mobility scheme across New Zealand. Improvement in this scheme may foster more independent travel for the disabled community.

The Total Mobility review, led by the Ministry of Transport, will report back to their Minister in 2005. The report will review the system of targeted transport assistance to disabled people with the aim of establishing a system that is nationally consistent, portable and secure. An extra $9.5 million was allocated to the Total Mobility scheme from August 2005.

Local authorities play an important role in supporting disabled people to get around their communities.

Absolutely Positively Accessible Wellington

In 2005 Wellington City Council (WCC) introduced a mobility parking policy after consulting with mobility card holders, completing an audit of existing mobility parking and consideration of worldwide best practice. Implementation of the policy will see the number of mobility parks in the central business district increase from 23 in 2005 to 60 by 2008. Future planning must incorporate a baseline of mobility parking being at least 2% of standard car parks. Mobility parks in both city and suburban areas will be situated where they are most needed, determined in consultation with users.

All car parks are being designed so they are suitable for people with a range of impairments; for example, wide enough for safe wheelchair access and with kerb ramps, easy to manoeuvre in and out of and on a suitable gradient.

Methods of payment for parking will be easy to access and easy to use with wheelchair-accessible coin meters at each park. Mobility card holders will be encouraged to use a pre-paid electronic meter. Smart Park, a prepaid electronic meter that users rent, has just been introduced in Wellington, and a trial of providing free rental for mobility card users is currently under way.

The council recognises that disabled people may need more time to reach destinations so allows mobility card holders to be one hour over the time restriction before they are fined.

Wellington, like all other cities, has faced the issue of people who do not hold mobility cards parking in mobility parks. WCC has adopted a strong enforcement policy on towing and fining to ensure mobility parking is accessible at all times to mobility card holders. They are currently engaged in a publicity campaign on towing and fining where people are invited to phone the council to initiate action if they see people illegally parking in mobility parks.

All council buildings with car parks attached will provide mobility car parks. Future city planning will need to consider accessibility for disabled people in the design of streets and amenities. This will include the provision of accessible routes to major amenities, with kerb ramps, audible crossing sounds and tactile tiles at crossings.

A partnership with Taranaki Savings Bank (TSB) has meant that eight mobility scooters are available for free use within the Wellington CBD. The TSB donated the scooters and the council operates a booking service and management for the scheme. Jennifer Rains says: “The scooters have been in use since early July 2005 and there has been an amazing take up, they are widely used and the scheme is working well. More central city locations are keen to be pick-up points for the scooters. As well as making the city accessible we need to inform people, and an ‘accessible Wellington’ map has been produced. This is just the first in a series of brochures.”

The WCC, through the disability reference group, is in discussion with local bus and train operators to make public transport more accessible to disabled people.

Improving communication for disabled people

Indicator 15: Percentage of disabled people who report their communication needs have been met.

Communication is fundamental to participation in any aspect of society. Appropriate assistance with communication for some disabled people can benefit them through all areas of life. Improvement will be evident when the proportion of the disabled population reporting unmet communication needs has clearly decreased.

Sam goes to a special needs school and has his own teacher aide. While he can’t talk he can certainly communicate. He has a great sense of humour and is right out there, interested in the world around him and trying to get involved. He can communicate his needs and wants with his eyes; he can easily convey yes and no. At home we know he can recognise letters and we are experimenting with him spelling words of things he wants. Because he is unique we realise it is going to be us recognising the way forward for him and then bringing the school on board so that they extend their expectations of what he can participate in and achieve. This is all new territory and we are always experimenting with possible means of communication and ways he can physically extend himself safely. We are all on a learning journey. Callum goes to a special needs playgroup and that’s a great time for him.

Sam and Callum, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

The 2001 Disability Survey found that:

• an estimated 45,000 or 21% of adults with a hearing impairment reported unmet needs for hearing equipment, services and assessments. The types of equipment most commonly needed were hearing aids with a T-switch, other types of hearing aids and volume-control telephones
• an estimated 14,000 or 20% of adults with a vision impairment indicated they had unmet needs for equipment or services, most commonly unmet needs for glasses or contact lenses
• 80% of disabled adults had a working telephone or cellphone available in their home; and 26% (an estimated 162,200) adults had access to the internet at home (substantially lower than the 39% of non-disabled adults). Disabled children (77%) were slightly less likely than non-disabled children (81%) to have a telephone or cellphone in their home, and were also less likely to have access to the internet at home (34% compared with 40%).

Progressing the New Zealand Sign Language Bill

For many deaf people, New Zealand Sign Language (NZSL) is an essential and first language. The historic lack of acknowledgement of this has resulted in a denial of some basic citizenship rights.

I attended Kelston School for the Deaf from age five to 18. It was very hard for me to understand why I had to leave my whānau to go to the school. I know that my Dad wanted the best for me and that my family love me very much. However, their lack of understanding of my culture as a deaf person, and because my family did not sign, meant that there were times when I felt lonely and I missed sharing my feelings with them. I did not have many hearing friends and stayed home a lot. I did have deaf friends and I worked with them as well. In high school I attended classes with non-hearing students in sewing, cooking etc. When we had to take exams I knew that our exams were not graded at the same level as hearing students and I felt that hearing students were smarter than me.

…I attended courses that did not have interpreters or communicators so it was very hard for me and I found them boring…

… I met my partner Mita when I was working as a seamstress. It was great to be able to talk to someone in my language, sign. We became very close friends and one day when I was over 20 Mita took me to the beach. That was so wonderful for me and I started to cry because that was the first time I had ever been to the beach…

My life now is wonderful. I know that I need to learn more but I also know that I have come a long way. I have a daughter who attends kura kaupapa. It is hard for me to attend parent interviews as there are not enough Māori-speaking interpreters or communicators who can support me. This is distressing for me as I can only rely on my child to sign to me about how she is doing at school. It is good that all my children know sign language...

Kathy, Life is for Living, to be published at www.odi.govt.nz

Government has developed a New Zealand Sign Language Bill to provide for:

• the official recognition of deaf people’s language – NZSL – as a unique New Zealand language with equal status to spoken languages
• the right for users of NZSL to receive NZSL interpreter services in legal proceedings
• principles to guide government departments on the use of NZSL to promote and provide access to government services and information
• regular reporting on the progress made in implementing the Bill.

The first reading of the Bill took place on 22 June 2004 and was supported by all political parties. The Justice and Electoral Select Committee tabled its report in July 2005. Their main recommendation was to propose a new clause to review the legislation after three years.

Enactment of the Bill will be a first step in addressing the serious neglect of the needs of many deaf New Zealanders. Key ongoing work includes:

• developing the NZSL interpreter workforce, including consideration of mechanisms for ensuring competency standards
• reviewing funding mechanisms for NZSL interpreters

…I love the interpreting work. I gave up a full-time job and took a big cut in pay to do this work. If a qualified interpreter came here I would have to give it up. It means I don’t have total control of my career. However I see myself working as an interpreter a long time into the future…

Because I have been deaf I know what an act of trust it is to use an interpreter. You rely on the interpreter to communicate really important and personal information. Interpreters are communicating at intimate or serious medical examinations, in situations involving legal interpretations, with the Police or with courts. The deaf person has to trust the interpreter has got it right. I really understand the responsibilities of an interpreter to be accurate, impartial and confidential. [Note: Tina has had a cochlear implant operation].

Tina, Life is for Living, to be published at www.odi.govt.nz

• development of mechanisms to promote NZSL and for review of the NZSL Bill
• removing language barriers to deaf peoples’ participation in education, health, employment, the justice sector and public broadcasting, using the Disability Strategy work plans and reporting processes.

The NZSL Bill specifies the Disability Strategy planning and reporting process as the monitoring mechanism for the Bill. Once passed into legislation government agencies will be required to report on how they will ensure, and have ensured, appropriate access to their information and services for deaf New Zealanders.

Some government agencies have already reported some activities supporting the objectives of the NZSL Bill. Several departments report that NZSL interpreters are available on request for their services and public meetings. The Office of the Health and Disability Commissioner has provided staff with regular NZSL lessons. The Chief Electoral Office has produced a film in collaboration with the Deaf Association using NZSL to explain enrolment and voting procedures to deaf people for the 2005 election. The Ministry of Justice are working to improve the interpreter services provided in Courts and this will include NZSL interpreter services.

The New Zealand Police report many initiatives to improve their services for deaf and hearing impaired people. These include:

• training for front-line staff on the use of NZSL interpreters
• producing a NZSL version of the Neighbourhood Support video
• a notice informing staff about a new communication system for deaf and the hearing and speech impaired was placed on the National Bulletin Board
• communication centres put 111 call procedures in place for telephone relay service (TRS) users and have set performance measures for emergency communication on teletypewriters and fax machines for the same response time as set for other emergency calls
• text is now entered for each event, which enables information to be pulled on number of calls to TRS or Deaf Fax, the nature of the calls, and the response time
• a deaf awareness training workshop has been designed to be delivered by the Deaf Association.

Establishment of a New Zealand telephone relay service

The Ministry of Economic Development launched the New Zealand Relay Service in November 2004, a telecommunications service that will enable people who are deaf or have speech or hearing impairments to use the telephone. The relay service is available nationwide, 24 hours a day. Trained call centre operators convert typed text into speech, and vice versa, to enable live conversations between people who are deaf or hearing impaired and people who are not. Sprint New Zealand is the relay service provider.

The service was established under the Telecommunications Service Obligations (TSO) framework of the Telecommunications Act 2001. The Human Rights Commission had reported to the Prime Minister that the government should establish a deaf voice text relay service under a TSO. The Commission had previously received complaints from deaf people about the lack of a relay service and had issued its opinion that the failure to provide this service was discriminatory. It had not resolved the complaints.

Some organisations receiving relay calls have expressed concerns about confidentiality and privacy responsibilities. These concerns have been addressed by clarification of the relay service’s confidentiality protocols and suggestions for how agencies can successfully accept relay calls. Some organisations have since successfully adapted their call centre policies or processes to be inclusive of deaf, hearing impaired and speech impaired people.

The New Zealand Relay Service Advisory Group, established in April 2005, includes deaf, hearing-impaired, deaf-blind, speech impaired people, and a parent.

The relay service is going well, with the target number of call minutes after two years of operation being achieved in the first eight months of operation.

…I was mainstream educated with some technical support, but with no interpreter and no note taker. As I progressed through secondary school it got harder and harder. I struggled with the work and just thought I was stupid so I left school at 16 and got married a year later. I had no close friends in my school years – it was just too hard to connect with people. As I got older I had a circle of Deaf friends and a few friendships with a group of neat hearing people who bothered to learn how to communicate with me. In our family it was easier, because my Mum and another sister were deaf and we signed at home…

When I was in my late 20s my mother and sister got cochlear implants and I decided to get one too… Before the implants I could not use a phone, I could not go to any appointment and be sure about what was said. If it was important I needed to take an interpreter, or my partner, or a hearing friend. If no one was available meetings were very stressful. I was limited in what work I could do in the community. Even everyday one-to-one communication required my full concentration and had difficulties. I limited the number of interactions I had. It was too hard, too tiring, so you end up feeling you do not belong with other people. Because the communication is difficult you feel stupid and limited.

Tina, Life is for Living, to be published at www.odi.govt.nz

Improving access to health services that meet disabled people’s needs

Indicator 16: Percentage of disabled people who report their need for health services have been met.

Disabled people tend to have higher needs for health services than non-disabled people. This is partly explained by the overall lower economic status and the vicious cycle of deprivation associated with this. Some higher health needs can be explained because of an older overall demographic and some are the result of health issues directly associated with particular impairment types.

I have cerebral palsy, which affects my left arm and hand. My left hand has a tendency to attack itself as the fingers constantly rub and dig into one another, causing the skin to break down and often become infected. To prevent the fingers causing any damage I have worn a splint, or some form of protection on my left hand since I was about four and have gone through many different types, styles, and versions. I’d love to find the perfect splint, but I don’t know that it’s out there. I’ve been looking for 20 years, and been to many different specialists. I’ve had the fingernails removed from my thumb and index finger, which is working well to prevent infection. I had a tendon transplant when I was 14, to try and combat the severe spastic diatonic movements; however that was nowhere near as successful as hoped. For almost 10 ten years now, three or four times a year I have botox injections deep into the muscles in my left arm, to relax them and combat the extreme spasms and this works well.

Anna, Life is for Living, to be published at www.odi.govt.nz

There is evidence that health services, including health promotion and illness prevention, are not always responsive to the needs of disabled people. International literature shows that the disabled population have higher mortality and morbidity rates than non-disabled people. It is necessary for health services to be more responsive and to better co-ordinate their services with disability support services.

Improvement will be evident when the proportion of the disabled population who report an unmet need for at least one type of health service decreases.

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 healthcare to learn how to manage my health better and make the most of the time when I’m feeling good. I suffer poor physical health due to my impairment, high blood pressure, stomach complaints, and general stress-related illnesses. They make my life quite difficult and limiting on many occasions. I would love to be physically well so I could just concentrate on dealing with my mental issues. It would be great to have support in the form of some decent affordable healthcare and a doctor who could work with me in getting my health back.

Craig, Life is for Living, to be published at www.odi.govt.nz

Latest trends and data

The 2001 Disability Survey found that:

• 15% of disabled adults, an estimated 94,900 adults, indicated that in the previous
  12 months they had needed to see a health professional, therapist or healer but had not been able to (a slight increase over the 1996 survey)
• parents or caregivers of 17% of disabled children, an estimated 15,500 children, reported their child had needed to see a health professional, therapist or healer in the previous 12 months but had not been able to.

Research undertaken by the National Advisory Committee on Health and Disability between 2001 and 2003 found that many adults with an intellectual disability have health conditions that are treatable, relievable or able to be cured but for which they are not receiving appropriate medical care or management.

In addition to the significant barriers to receiving health care, the National Advisory Committee on Health and Disability is very concerned about prescribing practices for this group [adults with an intellectual disability]. Many people are over-medicated, use outdated medication and are unable to access specialist review. The committee was given access to an analysis of the pharmaceutical records of more than 2,500 adults with an intellectual disability. The records showed some very worrying prescribing practices. For instance, 40% of people being treated with psychotropic medicines had never been diagnosed as having a psychiatric condition. It appears that in many cases medications are being used to deal with behavioural problems, rather than the cause of behavioural issues being addressed.
National Advisory Committee on Health and Disability (2003)

Activity that will improve health outcomes for disabled people

The Ministry of Health reports that in the 2004–2005 year:

• the national breast screening programme aimed to ensure all screening and assessment services it provides are responsive to disabled women and their facilities are physically accessible
• a clinical guideline for the diagnosis and management of Autism Spectrum Disorder is near finalisation
• the second New Zealand Mental and Addiction Plan: Te Tāhuhu – improving Mental Health 2005-2015 has been released. The plan provides an overall direction for investment in mental health and addiction services.

Gaps and opportunities to improve health outcomes

QE Health is a vital place to me, it’s a lifeline. It has the only post-polio clinics in the country. Here we get up-to-date information about our degenerative condition, physiotherapy, occupational therapy, mud baths and wheelchair assistance. Going there each year is a chance for all of us to give each other support, maintain friendships and gain energy and renewed mobility to keep going. Our local DHB has not renewed its contract with QE Health. I don’t think they realise the holistic value of what is offered, because they are saying a physiotherapist in Auckland can offer the service. There is no value on the mutual support, friends who understand, experts who use a range of treatments to maintain our limited mobility. This is pretty devastating for us and I am currently advocating for continuing the treatment with senior management at the local hospital.

It’s tough living on a $200-a-week benefit and needing frequent doctor’s visits. There is no PHO (primary health organisation) near me, so its $45 a visit. At a time of rapid changes in my health that could be fortnightly or monthly, then there are frequent visits to the hospital. The car parking is $12 a visit. No appointments at the hospital can be co-ordinated so it could be there on two consecutive days. The costs mount up.

Max, Life is for Living, to be published at www.odi.govt.nz

There is an opportunity in the Primary Health Care Strategy to better meet the health needs of disabled New Zealanders. The new funding approach provides incentives for primary health care organisations to better promote good health and wellbeing for its enrolled population, including disabled people. In particular, there is an opportunity to improve the health care of adults with an intellectual disability through more effective illness prevention, health promotion and regular review.

As part of the development of primary health care organisations, the Ministry of Health has introduced a Care Plus initiative to make primary care cheaper and better organised for people with chronic conditions. This programme will soon be evaluated and access for disabled people including those with an intellectual disability will be an important issue to consider.

There is sometimes a need to better co-ordinate primary health care with support services. For example, if a general medical practitioner carries out a review of the medication for clients with an intellectual disability and finds a need to reduce the dosage there may be a need to work closely with support workers and other care providers to manage any changes effectively. The Ministry of Health is working with the two primary health care organisations that many ex-Kimberley residents are enrolling in. This may help develop practice models for other places.

More work is required to make best use of these opportunities. There is a need to raise the knowledge of primary care practitioners of the health issues for disabled people and about disability issues generally. For example, practitioners need to ensure disabled people can communicate directly about their needs rather than only through a provider or family member.

An article in an Australian medical journal commented that “although evidence has existed for decades in the literature that people with an intellectual disability have poor health, there has never been a loud call for this injustice to be redressed, not even from the organisations which exist to improve their welfare” (Lennox et al, 2000 in National Advisory Committee on Health and Disability, 2004).

In New Zealand this situation has changed. The To Have an Ordinary Life report, released in September 2003 by the National Advisory Committee on Health and Disability, makes strong recommendations to address the health issues of people with intellectual disability. Moreover, the Ministry of Health has undertaken to progress this work. It will be very important, however, to keep the momentum of commitment inspired by this report and capitalise on the opportunities in primary health care to make real change in the lives of disabled New Zealanders.

Objective 9: Support lifestyle choices, recreation and culture for disabled people

Alma is well known in our community. I take her out with me shopping etc. Alma goes to a voluntary job at the Salvation Army shop one day a week. She loves the job and always goes. She goes to Gracelands five days a week with two of those days spent at day care. She was one of their first clients so it’s like a second home for her. She likes the gardening group there, and does art too. She is great with children. Once a month friends take her to a country music club and she loves it. It is emotional for Harold and myself to see her up there singing with a very supportive group of friends. Alma loves being with people, she likes being part of a group, both to contribute and to have fun in her own way.

Alma, Life is for Living, to be published at www.odi.govt.nz

Promoting participation in sports and recreation

Indicator 17: Proportion of the disabled population involved in sports and recreation.

Participating in recreation activities is an integral part of active involvement and inclusion in society for all people. It can also contribute towards rehabilitation and other health and wellbeing goals. Improvement will be evident when there is an increase in the proportion of the disabled population who actively participate in sports and recreational activity.

Latest trends and data

Sport and Recreation New Zealand (SPARC) undertook sport and physical activity surveys between 1997 and 2001. They found that 28% of disabled adults were active members of a club or gym, 19% took part in at least one organised sport/active leisure competition, and 19% received some coaching or instruction for at least one of their chosen sports or activities. In comparison the national figures are 36%, 26% and 23% respectively.

• Twenty-two percent of all disabled adults were involved in active leisure in a capacity other than as a participant, compared with 27% of all New Zealand adults. This includes being involved as a coach, referee, official administrator, or parent helper, either paid or unpaid.
• Just over half of young disabled people (53%) received some coaching or instruction to help them improve their performance in their chosen sports and activities, which was lower than the national rate for young people of 62%.
• Sixty-three percent of disabled young people are active compared to 68% of all young New Zealanders.

Activity to increase participation in sports and recreation

As a result of the Sport and Recreation Act 2002, SPARC is required to encourage participation by disabled people and to recognise the rehabilitative nature of physical recreation and sport. SPARC reports that in the 2004-2005 year:

• Through the Halberg Trust, and its team of 12 sport opportunity advisors, 1,306 disabled school students and 534 disabled adults have been assisted to engage in sport or physical recreation. Also 2,032 disabled people have been involved in events run or facilitated by the regional sports trusts throughout the country.
• In the Auckland region, the Halberg Trust and the ASB Charitable Trust developed a resource called Sport Access that promotes the inclusion of disabled people into clubs, and sport and recreation facilities. Sports Access incorporates physical access audits as well as a toolkit to establish the organisation’s readiness to include disabled people. It culminates in an award for compliant facilities/organisations. Several territorial authorities have already begun to use Sport Access and the initiative may well be developed in other regions.
• In conjunction with the Christchurch City Council, the Halberg Trust developed a DVD illustrating best practice models for community inclusion. Entitled Get Onto It – Community Inclusion At Its Best, it shows predominantly teenagers participating in sport, recreation and dance alongside their non-disabled peers.
• SPARC created a new disability advisor position. A key role for this advisor will be the implementation of the No Exceptions Strategy and Implementation Plan, which promotes disabled people accessing sport and recreation activities.

The Department of Conservation reports that they have added information about accessible walking tracks to their website.

Promoting access to arts and culture

Disabled people should have opportunities to develop and use their creative, artistic and intellectual potential, not only for their own benefit but also for the enrichment of society.

The Giant Leap Disability Festival ran from 28 February to 6 March 2005 at Western Springs, as part of the Auckland Fringe Arts Festival. It featured disabled professional performers from London, Vancouver, San Francisco and Singapore, as well as local artists. This may have been the first truly international disability arts festival.

The festival highlighted and celebrated the distinct perspectives and creativity of disabled artists and performers. The organisers wanted to create a platform for disabled New Zealand artists to work with more established international performers. They hope that the festival will develop into a biennial arts festival and conference event.

The festival received funding from the same organisations as did the mainstream Auckland Arts Festival. These included corporate sponsors, in partnership with local authorities and Creative New Zealand.

Art and performance are magic and creative forces. Mix them with the experience of disability and they become a miraculous expression of the illusion of limitation and proof of the existence of infinite human potential.

Philip Patston

The first Deaf Short Film Awards were launched at the July 2004 Deaf View Conference in Auckland. Entries were produced, directed and/or written by a deaf person. The content was also related to deaf issues.

The National Library of New Zealand is a key provider of audio books to local authority libraries, and issued 32,000 books during the 2004–2005 year.
Arts Access Aotearoa is a charitable trust that promotes access and participation in arts. In 2005 they undertook a survey of “creative spaces”; arts programmes or gallery spaces targeted at marginalised population groups. The survey found that 84% of the people using creative spaces were disabled, predominantly with an intellectual impairment and/or mental health problems. Fifty-three creative spaces throughout New Zealand were identified in the survey. Wellington had the highest concentration with 10 providers; Waikato and Canterbury were next with four each.

Creative spaces are currently funded from a mix of funding sources; these include district health boards, the Ministry of Social Development, the Ministry of Health, local government, educational institutions and charitable sources.

There are numerous small recreational, cultural and artistic initiatives or projects undertaken in communities throughout New Zealand – from poetry clubs, open mike evenings to bingo or card playing bridge clubs etc. Sometimes these go out of their way to involve disabled people; sometimes they are set up by and for disabled people. Participation in these sorts of events and activities can make a real difference to someone’s quality of life.

I live in Sevenoaks and, once upon a day, I remember

The Sevenoaks Lodge poetry class began in February 2002 and meets once a fortnight to read poems aloud. Julie Leibrich, who takes the class, says: “Since 2002 we have heard hundreds of poems and we also learn something about the lives of the poets and discuss what the poems mean to us. The class enjoys all kinds of poetry – we listen to ballads and sonnets, poems which rhyme and poems which don’t, funny poems and serious poems. Sometimes people know a poem and they join in the reading. Many poems are also songs so sometimes we break into song and we are lucky that several people in our class have good voices.”

What is unusual about this poetry class is that the up to 25 participants are Sevenoaks Lodge elderly residents, many of whom have Alzheimer’s disease, other dementias or other disabling conditions. Membership of this group is not constant as individuals die and new friends join. Some members cannot communicate, but move their lips and follow with their eyes.

In 2004 Julie, a Sevenoaks volunteer, and the diversional therapist Trish Howard decided to encourage the group to write some poems. As Julie says: “For some with no language problems writing a poem was an easier task; for others it was more difficult and we had to find ways to find the words. Some cannot speak but wanted to write a poem. One person wanted to write about her garden, so we typed out many individual words about seasons, plants and growth and she indicated the ones she wanted to use and how she wanted them placed to make a poem. Some poems, like Looking at a Snow Wizard, were written in groups as members looked at and spoke about objects. We wrote down everything anyone said and then chose phrases exactly as they were to construct a poem. Some people were able to dictate their poems and one or two could write them down.

“When I started I thought poetry which had good rhythm might unlock thoughts and memories in the way in which music can. I had no idea how powerful the experience would be for the group and myself. Some of the last memories that we lose are memories of things with rhythm and things learned when we were young.

So many of our group recall nursery rhymes, poems they learned at school and songs they sang when they were young. This brings back memories, thoughts and pictures. You can see when I read a poem who in the group is moved by that poem– it’s in the eyes or a nod of the head or a look of engagement.”

Trish and Julie believed that most of the group could write a poem if they were encouraged. They gathered the poems together and published a book called Finding the Words. Families and friends came to the launch and every poem was read aloud. Each poet received a rose. To have their families with them as their poems were read was emotional. Families were very moved at what had been written and the occasion was a great celebration.

Julie and Trish comment: “We can all make false assumptions about the abilities and interests people who have difficulty communicating. The poetry book gave the Sevenoaks poetry class an opportunity to express themselves.”

When asked “What is poetry?” members of the group say: “It uses words to tell a simple truth.” “It’s harmonious with things going round.” “Health-giving, rest-giving, pretty good stuff.” “A good poem makes the pictures and the pictures unfold.”

Poets and poems at Sevenoaks

ONCE UPON A DAY Shall we do it? Shall we not? In never-never land There was so much to do. Life had changed. Being in love. She cut the cake He was nice I felt great. He looked lovely She loved it. We were both smiling. It was full love. Yes, a very nice day. The best wedding for a long time. Once upon a time. Once upon a day. I remember. Written by Ben and Jessie van den Brink

LOOKING AT A SNOW WIZARD (Looking at a snow wizard in a bubble that can be shaken.) It sparkles, as though all gems Have come down out of the sky To help shake it up a bit. It’s for semi children – not too young but not too old. They have come into a new world. Hoping to see a better place. It’s swirling whirling round. Going in and out. A group poem by Muriel Callaghan, Dinny Lincoln, Marion Raymond and Joan Tooley SEVENOAKS I live in Sevenoaks Which is full of old folks and blokes. We’re surrounded by lawns, shrubs and trees Waving in the Kapiti breeze. Written by Tony Nelson

Gaps and opportunities around funding for access to recreational, creative and cultural programmes

Historically, some disabled people participated in art and other creative activities in workshops set up within institutions. When the institutions closed some funding was channelled, in a relatively ad hoc manner, into art programmes in the community for disabled people. The programmes were originally intended to provide “meaningful activity” and to achieve a therapeutic purpose.

A review of vocational-type services, including art programmes, resulted in the 2001 Pathways to Inclusion Strategy to improve vocational and community participation outcomes. The intention now is that this funding should be targeted at supporting people to gain real jobs for real pay and/or community participation as others expect – an ordinary life.

A consequence of this policy, although not the intention, is uncertainty about the funding of services designed to enhance access to recreational, cultural and creative activities. Pre-existing services continue to receive funding from their historic funders. This may not be appropriate in the longer run but there are currently no opportunities for development or growth from this funding source.

I enjoy embroidery and used to belong to the local Embroidery Guild. My grandmother was an embroiderer and I liked it and thought it would be a good hobby for me. I’ve exhibited some of my work. I also do artwork, mostly painting in acrylics and using pastels. I’ve exhibited and sold some of my artwork too. When there was a gallery here in Te Awamutu my work was displayed for sale, but the gallery closed down.

I used to enjoy going to an evening art class. It was a smallish group and very social, as well as learning new art techniques, but the class is no longer on. It was great to get out to it one evening a week as you need something like that when you live on your own.

Andrea, Life is for Living, to be published at www.odi.govt.nz

There is a continuing need for policy work on how to better support the participation of all disabled people in the recreational, cultural, and creative life of New Zealand.

Supporting relationships

Sometimes people do not expect disabled people to have the same kinds of relationships that others have with their community, family, friends and intimate loved ones. This is an inaccurate and very unfortunate assumption.

Virginia and Douglas are a couple who share a special bond. They both have an intellectual disability and, in the past, have lived in residential care. They now live in a contract board situation with a family (Debbie, Steve and pre-schooler Chelsey) in Upper Hutt, and they are actively involved in their local community.

Debbie and Steve support Virginia and Douglas in caring for themselves. Douglas says: “Steve helps me to have a shave. I have epilepsy and I have had help to get my medication right. I take my medication myself and I keep control of it. I haven’t had a seizure for ages.” Debbie adds: “I take Douglas swimming often – he just loves it and would love to go more often but he would need support to do that. He needs to be able to get there and he needs to be watched all the time because of his seizures.” Virginia explains that: “the only thing we don’t do now is meet with our friends at People First. We can’t get there now since People First moved to Lower Hutt. We miss going there. We would need to get transport to get there. It would be good if they could arrange some transport for us to get there.”

Both Virginia and Douglas say they feel good about themselves. They have a good relationship with their own families. Virginia comes from a family of 12. She has two brothers with special needs and one of them is in residential care not far away. She keeps in touch with him and supports him as best she can. Virginia also has a sister living close by who “supports her and helps to keep her on the right track”.

Virginia and Douglas are both positive about how people treat them and say that no-one treats them rudely, although Douglas commented: “If someone upsets me at work I just tell me boss and he has a talk to them...”

Virginia (now 47) and Douglas (now 41) have been engaged for 11 years. They are very happy in their relationship and they are happy being part of Debbie and Steve’s family. The future looks bright for them and they have no plans to make any changes to the way they are currently living.

Virginia and Douglas, Life is for Living, to be published at www.odi.govt.nz

Sometimes disabled people need extra support to find friendships, and a small number of innovative initiatives around the country do this.

Friendship Links - Nelson Trust

The Nelson Trust matches volunteers with people who have an intellectual impairment in a one-to-one relationship for the purpose of lasting friendship and advocacy.

In 2005 there are 34 volunteer friendships, involving a friend from the community and a friend with an intellectual impairment. There are around 50 friends waiting for a community friend. Friendship Links Nelson has six trustees, including two with an intellectual impairment. A Ministry of Health contract allows Diane Ward to work for 15 hours a week as a paid co-ordinator. Friendship Links advertises widely for volunteer friends, using free advertising in newspapers and radio as well as advertising in community meeting places, at sports clubs, on work notice boards and in churches.

People who volunteer to be friends go through a screening process that involves checking references from two referees, a Police check and a discussion with the co-ordinator. Diane says: “This discussion allows me to make sure the person is suitable and is in a position to commit time to a friendship. I can then find out enough about the person to link the right people so the two friends will be able to develop a natural friendship built on some common interests. The friendship is monitored to ensure that it is mutual and that the person with the impairment has not had a friend imposed on them, and that the friends are not making unreasonable demands on each other. Training is provided for the new community friend, either individually or in groups and I’m only a phone call away if problems arise.

“We produce and distribute a regular newsletter. We have received funding from Nelson City Council to enable us to run social outings. We also have get-togethers three or four times a year, and these are great events always well attended.

“Currently our volunteers range from 23 to 65 years of age and choose to become a friend for a number of reasons. Some have a friend or relative with impairment or they have impairment themselves, giving them the empathy and interest to sustain the friendship. Others are just outgoing people with space in their lives for new friendships.

“The friends with intellectual impairment range in age from 23 to 90 and may have come from a background of a significant period spent in an institution before moving to community homes or supported independent living. Others may be living at home. Many people with an intellectual impairment also have a physical or sensory impairment that may limit their ability to move around or the sorts of interests they can pursue.

”It is always easier for me to match friends who can speak and are mobile than those who are non-speakers and are in wheelchairs. Sadly a number of those waiting for the right friendship have multiple and more severe impairments. I may match up, for instance, younger people who want to go out with their friend and include them in activities with their other friends, or a person from the community who is content to just sit with their friend and chat or read to them.

“Our organisation has some other roles. We work to expand the social networks of people by assisting them to widen their circle of friends and contacts and by promoting acceptance and understanding within the community. We encourage friends with intellectual impairments to join groups and clubs. We have a number who have joined the local country and western club. I currently have someone interested in rugby looking for someone to make them part of a rugby club.

“We work with people with disabilities, alerting other agencies to disability issues, anything we can do to ensure their ongoing wellbeing. Often community friends become aware of issues of concern for friends and contact me. I can then contact the right person or agency to deal with the issue. We of course work in with our local volunteer centre and have a page on the Nelson community website. Lastly we assist in bringing people with intellectual impairment into circles of ordinary community life, to be included and valued, therefore adding to Nelson’s diversity and enriching its community.”