To address diversity of need it is important to acknowledge that, in addition to some issues in common, there is huge diversity among disabled people. It is also important to address the specific needs of disabled people’s families.

Disability is a common yet diverse experience

Objective 11: Promote participation of disabled Māori

Indicator 18: Percentage of disabled Māori who report their need for transport and special equipment has been met.

Disability support services need to be responsive to the needs of disabled Māori. Improvement will be evident when fewer disabled Māori report unmet need.

Latest trends and data

The 2001 Disability Survey shows that, of all groups, Māori have the highest age-standardised rates of impairment. Compared with non-Māori they tend to have more severe impairments at younger ages. Māori are also more than twice as likely to report an unmet need for transport costs. Half of all disabled Māori adults living in households had a total annual income of $15,000 or less. Over a third had no educational qualification; considerably higher than their non-Māori counterparts.

The survey found nearly a quarter of disabled Māori living in households reported an unmet need for some type of health service (compared with 14% of non-Māori). Having an unmet need was particularly high for younger Māori (15-24 years) where the rate was almost double that of their non-Māori counterparts. Fifteen percent of disabled Māori had an unmet need for special equipment compared to 11% of disabled non-Māori.

Activity and opportunities

ACC has completed a draft literature review to contribute to the development of a Māori research programme to explore Māori use, expectations and experience of their services.

The Ministry of Health has started fieldwork research for a three-year project headed by the Māori Health Directorate to gather information on the use and experience of Māori accessing health and disability services.

The Northland Māori Deaf Project

Northland has one of the highest populations of Māori Deaf in New Zealand. A hui sponsored by Tai Tokerau DEAS in November 2004 identified the need for a service targeted specifically to Māori Deaf.

A project steering committee of six Māori Deaf was formed and funding obtained from the Māori Provider Development Scheme, funded by the Māori Health Directorate of the Ministry of Health. Committee chairperson Mita Moses says: “The Tai Tokerau DEAS Trust1 continues to support us to achieve our kaupapa. They hold the contract and provide the organisational infrastructure, but the steering committee drives the project.

“Funding was received in July 2005 and they have begun developing terms of reference and business and action plans. Our vision is that Māori Deaf in Tai Tokerau receive a service that is culturally appropriate and gives us skills and strength. We want to have a Kaupapa Māori Deaf organisation.

“Our committee needs some capacity building. The committee is like a motor, more skills gained make the motor work more effectively. We want to make sure the training we receive is culturally appropriate and will teach us specific skills such as literacy, governance, workshop facilitation and advanced computer training. We want to be actively involved with issues relating to Māori Deaf within our own communities and want to develop our leadership skills and support Māori Deaf in Tai Tokerau. Most important is to be able to bridge the gaps between us and our whānau, hapü and iwi.”

Committee member Mihirangi Marsters says: “What’s important about this project is that this project is driven by Māori Deaf. It empowers us to share our culture with our own people, and receive training. It’s about giving us access on the marae and growing leaders in our community.

“Literacy is a big thing for us. Many of us missed out on reading and writing skills because we did not have interpreters or at that time we were not allowed to sign. This was very frustrating and, when some of us had to attend mainstream schools, we missed a lot of the information because we were trying to rely on lip reading. It was hard for me and I left at an early age. New Zealand sign language is our language and I am very interested in becoming a literacy tutor using sign as a way to support Māori Deaf. I know that we will all gain more confidence in reading and writing and more employment and training opportunities.

“For some of us older ones (over 30) we were sent off to Deaf schools when we were very young and did not see our families until the holidays. It was very hard for us to communicate with our families. We were not allowed to sign at school but we signed amongst ourselves. We had home signs, school signs and signs that we used with our mates. Later we learned New Zealand sign language. In my family all my whānau, down to my great grandchildren, can sign. My husband was Deaf and from the Cook Islands. He had his own sign language and so I taught him New Zealand sign language. In my home we could all talk together, but that’s not the case for other Māori Deaf.

“The lack of Māori speaking interpreters or communicators has made it hard for us. I would rely on my children to support me as best they can, but many of us we lost the opportunity to understand our whakapapa, our Māoritanga. When there is a tangi, unless there is an interpreter present, many of us don’t have the opportunity to say farewell or understand what our friends or families are saying. This is very hard for us. Most of us worked in the kitchen and missed a lot of korero. Māori signs are being used in different regions. We want to work with our whānau so we can share and develop signs for Tai Tokerau.

“Overall, as a committee we are proud of who we are, and this project will give us the strength to continue with our mahi and find our own pathways and a strong way forward for the Tai Tokerau Deaf whānau.”

Objective 12: Promote participation of disabled Pacific peoples

Indicator 19: Percentage of disabled Pacific people who have received a needs assessment.

An essential step for ensuring improved access to services and acknowledgement of disability needs in the Pacific community is access to needs assessment and service co-ordination services.

Latest trends and data

The 2001 Disability Survey shows that disabled Pacific children were much less likely to have never received a needs assessment than their non-Pacific counterparts and disabled Pacific adults were less likely to use equipment, including hearing-related equipment.

Compared to their non-Pacific counterparts, disabled Pacific adults living in households were less likely to have access to a car, less likely to have post-school educational qualifications and more likely to be using income support services.

Mathew Ngametua is 24 and lives with his Cook Island Māori family in Auckland and participates in a variety of work. He doesn’t see his cerebral palsy as a barrier to doing the things he wants to do. “I have done three years tertiary study. I plan to do a business management course because I want to start up my own business – a clothing line for disabled people. I have decided on a name and I’m gradually getting my ideas together, writing them down and we’ll see what happens!

“At the moment I am doing contract work for CCS in their Community Development team. I do motivational speaking and anything along those lines. I do the same type of thing with Ripple Trust. I’m also working as a sales assistant in a video store. With my work in the retail sector I am dealing with people every day and the only barrier I can see is with the attitude of some customers. The staff are really supportive and help me to do my job well – not only that, they are good friends.

“My disability does not really impact on my ability to earn money and live the lifestyle I choose. When I wasn’t working I found it hard to have money in my pocket but since I started working it’s been all good – now I can actually hold onto my money. I get involved in community work. A couple of months back I was involved in planning for a youth forum at the local community hall. I was planning how everything should be set up to make it comfortable and accessible for everyone.

“Before I got involved with CCS and Ripple Trust I didn’t access any services because I did my own thing – I am really independent. I got around just fine but CCS and Ripple Trust have helped me with employment and living support.”

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

Activity and opportunities

The Ministry of Education has produced information about special education services and how to access them in five languages for the Pasifika community.
The Health and Disability Commissioner has compiled a handbook for staff, Guidelines for meeting with Pacific Island Peoples.

In December 2004, the Ministry of Health published a Pacific Health and Disability Workforce Development Plan. It is part of government‘s strategy to improve health outcomes for Pacific peoples and foster leadership and promote participation by disabled Pacific people.

In April 2005, the Ministry of Health published Te Orau Ora: Pacific Mental Health Profile. This is the first specifically-Pacific document to be published by the Mental Health Directorate. It contains demographic and mental health information to provide an overview of the mental health status of Pacific peoples in New Zealand.

Objective 13: Enable disabled children and youth to lead full and active lives

Indicator 20: Number of disabled children and youth in residential care.

A fundamental right of all children and young people is to live with their family, or in a family setting. To ensure this happens for disabled children, adequate support services for families are required, including good innovative options for allowing family members some time away from each other.

If care within the family of origin is not appropriate or adequate, alternative arrangements should be as close to a family setting as possible. These include foster care and shared care arrangements. Improvement will be evident as less New Zealand children need to live in residential facilities designed for adults.

Since shared care began there has been a big change in Mark’s behaviour. This year he has only been in time-out at school three times, and not for violent behaviour. Right from the start, Mark has fitted into Sue’s family’s routines. There he has his own room, he is trying different foods, shares space and interacts positively with her children – like letting them choose the TV channel to watch. He is still quite controlling about routines at home, but he is developing the capacity to handle more flexible routines in a new place and is more relaxed at home too. His anxiety levels when routines are broken have gone down considerably. The week when Mark is not home means we can have time for Claire and focus on her, and on fun things that we can not do as a family when Mark is there. There is much more space for spontaneous, noisy, different things.

CCS recently sent me and another parent to a One Person at a Time conference in Melbourne. It was an important time for me and Steve as, after the conference, I began to expand my vision of the kids’ futures, and began to dream big dreams for Mark. We were worried about what would happen when he was adult, or when we passed on. We had been thinking perhaps of him living in a flat attached to our house.

The conference expanded my thinking to establishing circles of support now that lead him to an independent adult life – perhaps, with the right support, flatting with a non-disabled friend and in suitable work earning an income independent of any benefits.

The conference focused on establishing new friendships, relationships and circles of support that encouraged young people to extend their contacts and slowly develop their independence. I wouldn’t have believed it possible, but I have seen how Mark can progress through guided new experiences with Sue in his shared care. Mark has a non-disabled friend and I’m about to take him to some mainstreamed after-school classes. He can travel on public transport now and is much more comfortable out in the community. Big first steps, and maybe the dream is too big, but I can see significant steps being made to reaching it…

Shared care benefits us all, and it has made such a difference to our family that I will do all I can to lobby for shared care for families who have a child with very high needs.

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

Latest trends and data

The Department of Child Youth and Family Services’ disability data derives from reports by their social workers. From this data we can get some indication of the numbers of disabled children that are living in residential facilities. However, it is known that the data is not robust with respect to this client population and also that there may be other children placed in residential care not known to the department. For example, children may have been placed in a residential facility as part of a respite care arrangement through the Ministry of Health’s Disability Services Directorate. Therefore, the numbers are likely to be an underestimate.

Under the Children, Young Persons and Their Families Act 1989, there are two pathways for placing disabled children in care arrangements outside their family of origin.

The first provides for situations where there is a substantiated care and protection issue. The second provides for children that require specialist care related to their disability needs and typically arises when parents or caregivers are unable to continue to provide the necessary level of care in their home. In this latter case a Section 141 care agreement is used. Some of the children under both sections of the Act are placed in residential facilities.

In March 2005 there were 194 disabled children recorded as placed in alternative care. Of these 101 were under care and protection agreements or orders and 93 were under section 141 agreements. There is no knowledge of how many in the former category were placed in residential care. Of the latter group 35 were known to be in some form of residential facility, with the remainder in family based care.

The 2001 Disability Survey shows that 11% of children (90,000 0–14 year olds) living in households had an impairment. This was the same level as in 1996, and in both surveys boys had a higher rate than girls. Nearly half the disabled children in 2001 had more than one type of impairment. The most common was learning disability, followed by chronic condition/health problem, psychiatric/psychological problems and hearing impairment. Forty-one percent of disabled children had impairments at birth.

The Youth Development Strategy Aotearoa (Ministry of Youth Affairs, 2002) identified key issues for young disabled people. These included providing opportunities for connections with peers, in particular young non-disabled people, and opportunities for meaningful work and ongoing education.

Thomas has been mainstreamed throughout his life but it hasn’t always been easy.

The transition from a small primary school to a large high school has put the stress levels up, but knowing the special education system helps. I am on the Special Education Parent Reference group. The problems Thomas has faced have been bullying, students and teachers looking at the “label first not the person” and focusing on what he can’t do rather than what his abilities are.

Thomas does work experience at the Bait N Tackle shop. This is such a positive experience; he is out there in the community working with people. His tasks are packing bait, counting hooks, writing price tags, talking to the customers and he loves it, even if we have to put up with the smelly bait plastered down his clothes.

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

Activity and opportunities

The Child, Youth and Family Service reports:

• the development of a booklet explaining process and guidelines to help with the support of children with high and complex needs. Information is also regularly updated at the www.hcn.govt.nz website
• a project to analyse the policy and legislative frameworks across Child, Youth and Family Service, and health and education frameworks in regards to disabled children
• completion of an action plan between Child, Youth and Family Service and the Capital and Coast District Health Board to improve the needs of their clients with mental health issues
• their executive committee participated in a workshop focused on improving services to disabled children and their families.

The National Library of New Zealand reports that disabled students can access the library’s print disabilities section via the children’s and young adult collection and services to schools and special needs units.

The Ministry of Youth Development sponsored two disabled young people and their supporters to attend a conference in Christchurch that explored opportunities for young people and their families.

Objective 14: Promote participation of disabled women in order to improve their quality of life

I found out later that my family were told I would not live to 20; that I would never marry and never have children. Well, in 1963 I got married and later had a child. I was a mum to one child of my own and to three step-children and now I’m a grand-mum! I was a mum on crutches. When my son was a baby I had it all worked out. I had a modified old-fashioned dinner wagon and when I needed to move him around I put him on that and pushed him from bed to kitchen etc. My wonderful husband died in 1989. My son has never seen me as disabled, and now at age 40 he still sees me as just Mum.

As I have got older my bone problems have got worse. I have osteoarthritis in most of my joints. Years of using crutches have damaged my shoulders. Unfortunately a car accident in 1993 put me back in a leg plaster for another eight months. I now have home care; a great lady comes in every morning to help me with a shower. She does my housework and washing. I do feel the home carers are so underpaid for what they offer. I cook my meals, but the weekend without assistance is a bit of struggle. I have my scooter, and both a manual and an electric wheelchair.

I really value my independence. Since 1990 a big thing in my life is my once or twice a year visit to the Queen Elizabeth Hospital (now called QE Health) in Rotorua. The combined physiotherapy and occupational therapy plus the mineral baths etc have been the major things in keeping me mobile. Being mobile means being independent – it’s my way of staying active in the community and not being forced into a rest home situation that I’m not ready for yet…

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

Latest trends and data

The 2002 report to the United Nations on New Zealand’s progress on implementing the Convention on the Elimination of all Forms of Discrimination against Women (CEDAW) noted a concern within the disability sector that the management of the sexual behaviour and reproductive health of women with intellectual impairment has been over-medicalised and over-managed. This compromises the rights of the women concerned.

The United Nations committee that considered New Zealand’s report on CEDAW in July 2003 recommended that action be taken to ensure disabled women do not suffer discrimination, in particular in the areas of employment and access to health care and loans. The committee also suggested New Zealand pay attention to ensuring married disabled women are able to be economically independent.

Women, including disabled women, have traditionally been the primary caregivers of family members. As a result, they have been the most likely to bear the costs of providing care, which can include isolation from the wider community, a weakened economic position and little time for themselves. This can create double disadvantage for disabled women.

According to the 2001 Disability Survey women comprise nearly 70% of approximately 25,900 disabled adults who live in residential facilities. This is because women live longer than men, and older people account for the majority of disabled people in residential facilities.

Activity and opportunities

The Ministry of Women’s Affairs tries to incorporate consideration of disabled women across all areas of their policy work. Current examples include:

• Family violence. Inter-agency work undertaken in this area has raised a concern that women with mental health issues who suffer partner violence are denied access to most women’s refuges. This is a matter of great concern and a response is being explored.
• Sexual and reproductive health. The Ministry of Women’s Affairs is involved in a review of sexuality education for secondary school level students. One component of this review will assess whether the needs of groups such as Māori, Pacific and disabled women are being adequately met through current sexuality education.
• The Ministry of Justice has led work on designing the next New Zealand National Survey of Crime Victims. As part of this the Ministry of Women’s Affairs is discussing with the Ministry of Justice the inclusion of information on the level of victimisation experienced by people who have impairments.
• The Ministry of Women’s Affairs has a nominations service that records information about disabled women on their database. This service could contribute to disabled women’s participation in leadership and decision making on statutory boards and committees.

Objective 15: Value families, whānau and people providing ongoing support

It’s tough. If I get the flu, and especially if Sam is sick too, there is no going to bed for me. Sometimes I get very tired. There is no available respite care for Sam available in this city. Apart from me, Rose (14) is Sam’s principal carer. I have total trust in her and she can do all that is required to care for Sam. This means I can go to an appointment and leave him with her. It’s sad that even when she is older she can’t ever be paid as a carer because she lives in the house. Soon she will want a part-time job, and I can’t pay her for her care of Sam.

Fiona at 17 is beginning to explore her independence and has a part-time job. Some of her money she uses to buy the things other families provide, like clothing and make-up and money for outings. Luckily our teenage daughters are not the demanding type. They and their friends come to the house a lot; we always have kids staying over. The girls are brilliant; they kind of understand there is no space in our family for teenage tantrums. I do make sure they get to do their own things and not resent their Dad and Sam’s disabilities. Whenever Darren can look after Sam I use my time with the girls. However, we are a day-by-day family. We can’t plan a day ahead. We wake up and see how everyone’s health is and then adapt accordingly.

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

Indicator 21: Percentage of family caregivers who report that their needs for respite care or carer support is met.

There has been an implicit social contract under which caring is viewed as a natural part of family life, so that people are obliged to care for family members as a “familial duty” rather than for payment. At the same time, there is general acknowledgement that families caring for disabled people have responsibilities over and above those faced by other families, resulting in greater costs to the family. While a range of provisions is available to assist, there is growing awareness that more support is needed.

We do worry about Alma’s future if Harold and I are not there to look after her. She has always been with family and we would never consider putting her where she will not be happy. We are aware that some time, hopefully well into her future, we will have to make some hard decisions.

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

Latest trends and data

The 2001 Disability Survey found that disabled people relied heavily on their spouse, daughter, son or mother to get help for everyday activities. Nearly one-fifth of parents or caregivers of disabled children reported needing respite care or carer support in the previous 12 months, and nearly half said they had been unable to get this respite care. A comparison with the Disability Survey done in 1996 found the unmet need for respite care had not changed substantially.

Consultation with family caregivers by the Office for Disability Issues has found that problems for family caregivers include a lack of information about available government services, exclusion of low-cost items from funding support and general difficulties in accessing services.

Hardship for middle-income families subject to income testing for the disability allowance, and the lack of co-ordination between services, are also key issues.

Sometimes children and young people are providing care for disabled family members. Other countries provide formal recognition of the carer’s needs in these circumstances. In the United Kingdom, for example, young carers receive their own needs assessment when services for their family are being organised. At present in New Zealand, there is little support available specifically for young carers.

Activity and opportunities

A number of interest groups for family caregivers and other informal caregivers have emerged in recent years. These are likely to play an increasingly important role in advocating changes to policy and provision relating to family caregiving.

About 14 years ago we decided there needed to be some sort of support group for families like us and this was the beginning of the Northland Down Syndrome Support group…

As a group we share our ups and our downs as we care for disabled family members, our frustrations with service providers, our breakthroughs with and successes with service providers. It’s a place where you can both laugh and cry about our situations and so some of the stress is vented. We take good care of each other and, for most of us amongst the group we find special friends. I’ve a great mate that I first met through the group and we talk every day. Through our newsletters and our meetings we communicate information. Sometimes it’s very hard to find out what we are entitled to, or how to get access to services or carers that will work for us, so we share information…

We network with other organisations and work to hold events and social events so our members from throughout the far north can take part.

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

The Ministry of Women’s Affairs is undertaking work to enhance the choices available to parents and other carers in relation to labour market participation. One workstream is considering issues for people with caring responsibilities other than parenting (such as elder care or care of people who have impairments), by parents who are themselves disabled, and parents of disabled children.

Intensive flexible family support project

CCS led this project with funding from the Ministry of Social Development. It emerged following concerns that supporting for families with a disabled child only occurred when the family were nearing or already in crisis. The project emphasised community development, family strengths and child rights. Central to the project was a commitment to increasing interagency understanding, co-ordination and practice.

The project generated an early support framework, which sets out how families might be supported, and how this service could be designed, funded and outcomes measured. CCS, together with the members of the project group, supports and endorses this framework.

It is hoped the project will lead to the development of a service in keeping with the early support framework and a commitment to ensure disabled children have the best possible chance of the ordinary experiences of family, play, community, education and friendships that are key to all children’s lives.

ACC provisions allow disabled people to engage immediate family members as paid caregivers, but other government agencies’ provisions do not. This prohibition on family caregivers receiving government-funded wages or entitlements was challenged in 2001 by the Human Rights Review Tribunal, in IHC v. Hill. The tribunal ordered IHC to consider an application from the Hills to be the contracted caregivers for their adult son, on the same basis as applications from non-family members.

In response to these events and further complaints to the Human Rights Commission, the government asked the Office for Disability Issues to lead a review of payments to, and support of, family caregivers of disabled people. The Office is progressing this work in two ways: analysing the current policy that makes family members ineligible for paid employment as caregivers and developing a range of options for assisting family caregivers.

Initial consultation and scoping work for the review found that the tribunal’s decision raised difficult and complex ethical and practical issues.

• independence – could disabled people become locked into dependence on their families, and would family members feel pressured to take on a caregiver role?
• choice – would disabled people feel obliged to accept a family member as their contracted caregiver, and would service provider organisations promote this option solely because it appears less expensive than others?
• quality – are family members always the best caregivers, and how could care provided by families be formally monitored to make sure that it meets basic standards?

Government’s objectives for family caregiving of disabled people, and of responsibilities in meeting related costs, were outlined at the Caring for the Carers Summit in March 2005.

Progress for New Zealanders with an intellectual disability

In September 2003, To have an Ordinary Life, a seminal research report on the lives of adults with an intellectual disability, was released by the National Advisory Committee on Health and Disability. It sparked a great deal of concern, and commitment to address longstanding and sometimes disturbing problems that New Zealanders with an intellectual disability experience. It is important to maintain this momentum and make the most of the “window of opportunity” created by the research.

This year government agencies were asked to provide information in their progress reports and implementation plans, where relevant, about work related to recommendations in the Ordinary Life report.

I have lived in lots of different IHC homes. I really like this one. We are surrounded by good neighbours. In the summer we all get together for a neighbourhood cricket match and a barbecue. In this house I have my own room and my own TV. I don’t need any support to look after myself. Bev and Heather do the cooking but we have turns to help. We each have a week on at doing the ironing. Bev and Heather help me manage my money.

I go to the Trentham races and meet up with my cousins. I put some bets on but I have a limit and I do all right. I went over to the Melbourne Cup with Heather.

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

Some progress is evident, for example:

• The disability allowance is no longer paid to vocational service providers, allowing individuals better access to income support and autonomy.
• People First has a representative on the newly established Disability Advisory Council, which advises the Office for Disability Issues.
• Social Services Select Committee have reported back on the Disabled Persons Employment Promotion (Repeal and Related Matters) Bill.
• The development of a number of services for ex-Kimberley Centre residents, including an innovative programme called “Explore”. This specialist service includes health and social service professionals from a wide range of disciplines working together to provide a one-person interface with clients. They educate each other, local providers and families, and work collaboratively to promote the best “whole-of-life” outcomes for their clients. Work has also begun with local primary health care organisations to improve the provision of health care. This is also discussed in chapter four.
• Self advocates have been involved in the many aspects of the development and ongoing review of the programmes developed for ex-Kimberley residents. This includes inclusion on the interview panels when selecting providers.
• A major evaluation of the lives of Kimberley residents pre- and post-de-institutionalisation is planned. Reviews of the various new initiatives should provide useful evidence for wider service development.
• The Ministry of Health undertook an “Enhancement Project” which aimed to encourage and support people in residential care and their providers to focus on individual needs, rather than taking a group approach to service delivery. In the project’s first phase 659 assessments were undertaken. In the second phase a training programme was developed. Currently work is in the Auckland and Northern region but if successful it may be taken out further.
• The recommendations made in the “Ordinary Life” report regarding policy and purchasing frameworks were considered in the Quality and Safety project described in chapter three.
• The Ministry of Health reports that many of the recommendations in the “Ordinary Life” report related to Pacific people with intellectual disabilities will be addressed through activity under way to implement the Pacific Health and Disability Action Plan. This plan was launched in 2002; programmes are now gaining traction, in particular in relation to the newly developed Auckland Pacific Disability Plan.
• The Office for Disability Issues has begun work considering personal advocacy and communication services for people with an intellectual disability. In the 2004–2005 year this included a literature review and consultation.

There is evidence from various conferences and discussions that many service providers are interested in developing ways to change their service delivery to address the concerns outlined in the “Ordinary Life” report. However, there are concerns expressed by the sector that the government activity to date is not enough to support these developments or make a real difference for this seriously deprived group of New Zealanders.

While many pre-existing programmes have been modified to take account of the research findings, not often are specific or new resources allocated to ensure the required changes or development occurs. In particular, more work is needed to deal with inappropriate prescribing practices, poor dental outcomes and to improve the rules and systems related to services so they can better support ordinary lives and move away from a custodial model of service provision.

The changes required will take time to get right, however, and momentum appears to be building rather than waning. And, if some of the small scale innovative service developments prove as effective as currently hoped, it may be possible to roll these out on a wider scale.

The Office for Disability Issues will keep activity in this area on the agenda for progress reporting around the Disability Strategy. It will also be possible in future to measure progress in terms of outcomes. In April 2005, the Ministry of Health published Living with Intellectual Disability in New Zealand, outlining key findings on intellectual disability from the 2001 Disability Survey. This report, along with information from the Enhancement project and the Ordinary Life report, provides the most comprehensive picture of the status of intellectually disabled New Zealanders we have ever had. It will be an effective baseline against which to measure progress.