Objective 11	Objective 12	Objective 13	Objective 14	Objective 15
Promote participation of disabled Māori	Promote participation of disabled Pacific peoples	Enable disabled children and youth to lead full and active lives	Promote participation of disabled women to improve their quality of life	Value family, whānau and people providing ongoing support

Context: issues, activities and trends

There are serious issues of double disadvantage for disabled people who also come into other population categories that experience discrimination (eg on the basis of gender, age or ethnicity). This is very apparent in the data on the outcome status of the population groups discussed in this chapter. The specific issues for family, whānau and caregivers also warranted individual attention in the Disability Strategy.

Cutting the Strategy, as we have done, on the basis of population groups as well as on the basis of ‘areas of life’, creates overlaps. The assumption is these overlaps ensure there are no inadvertent gaps, and the specific issues of these population groups are addressed through the proactive promotion of the issues. The following discussion of issues and trends provides an important baseline from which to measure progress for disabled people who experience double disadvantage, and for their families and whānau.

Māori: issues and trends

The 2001 Disability Survey shows that, of all groups, Māori had the highest age-standardised rates of impairment. Compared with non-Māori they tended to have more severe impairments at younger ages. Māori were 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. This was considerably higher than their non-Māori counterparts.

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

A key initiative for disabled Māori was the launching in 2002 of He Korowai Oranga: Setting new Directions for Māori Health. This is based on the principles of partnership, participation and protection. A related action plan, Whakatataka, includes strategies for ensuring disabled Māori receive disability services to improve whānau ora and to reduce inequalities.

Pacific people: issues and trends

The 2001 Disability Survey shows that disabled Pacific people have high needs for health and disability support services, some of which are not being met. Disabled Pacific adults were less likely than their non-Pacific counterparts to use equipment, including hearing-related equipment, and disabled Pacific children were also much less likely to have ever received a needs assessment. 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.

Children and young people: issues and trends

The 2001 Disability Survey shows that 11 percent 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 1996 and 2001 Disability Surveys show an increase in the delivery of special education services. However, compared with non-disabled youth, disabled young people aged 15-24 were less than half as likely to have post-school qualifications.

A negative trend was the 9 percent decrease in labour force participation of disabled young people (15-24 year olds). The labour force participation for all 15-24 year olds remained about the same during this period.

In recent years, the Human Rights Commission has received a number of complaints from parents about access to the services and support needed for the care of their disabled children.

In October 2003, the United Nations Committee on the Rights of the Child provided New Zealand with recommendations to improve the outcomes of disabled children. These included the better integration of disabled children into mainstream education and other aspects of society.

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.

Women: issues and trends

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 make sure 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.

A key initiative in this area is the inclusion of a focus on disabled women in the Action Plan for New Zealand Women, launched in March 2004 by the Minister for Women’s Affairs.

Families, whānau and caregivers: issues and trends

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. About 11 percent of adults with a severe impairment reported an unmet need for respite care in the previous 12 months, usually because they did not know it was possible to apply for free respite care or where to apply for it.

A comparison between the disability surveys found the unmet need for respite care did not change substantially between 1996 and 2001.

New Zealand’s report to the United Nations on the Rights of the Child, presented in December 2000, expressed the view that parents and families with a disabled child have a particularly hard time. Key issues noted in the report’s submissions included hardship for middle income families subject to income-testing for a disability allowance, and the lack of co-ordination between services.

Problems for family caregivers of disabled people include a lack of information about available government services, the ineligibility of immediate family members to be paid carers, criteria which exclude low-cost items from funding support and general difficulties in accessing services.

A key area of activity in this area has arisen as a result of the complaints to the Human Rights Commission. The Office for Disability Issues is charged with reviewing payments to and support of family caregivers of disabled people.

Gaps in activity

There are more gaps in the reported activities in this chapter than in the other chapters, particularly for women and family and whānau. Some of these gaps will be addressed as the action plan for women and the review of payments to and support of family caregivers make progress.

Reported activity between July 2003 and June 2004

Objective 11: Promote participation of disabled Māori

11.1 Build the capacity of disabled Māori through the equitable allocation of resources within the context of Māori development frameworks

Te Puni Kōkiri reports that 12 regional whānau development hui were completed during the reporting period and the action plans being developed as a result of these hui will identify the needs of disabled Māori.

11.2 Establish more disability support services designed and provided by Māori for Māori

No specific activity has been reported.

11.3 Ensure mainstream providers of disability services are accessible to and culturally appropriate for disabled Māori and their whānau

The ACC has appointed a General Manager for Māori Development. The appointment should improve the co-ordination of initiatives designed to meet the ACC’s goals of increasing access and improving outcomes for Māori claimants.

The Ministry of Health reports a partnership with the Health Research Council and the ACC in a three-year project to provide information about the experiences of Māori when accessing health and disability support services.

The Ministry of Education reports progress on the Māori Strategy for Special Education. Three initiatives are underway in 16 districts. These were discussed in several national forums. The Pouwhakarewa (regional Māori advisers) were noted for the excellent job they did in driving the initiatives and ensuring that all Pouarahi-a-Takiwā (district Māori advisers) were aware of their requirements.

The initiatives include programmes to build relationships at the early intervention level and to make referral processes easier for whānau, workshops to build understanding, awareness and cultural sensitivity among special education staff to improve services to Māori, work to attract suitably qualified Māori specialist staff, projects on appropriate cultural supervision practices and a disability expo at Ngāi Tahu Hui-ā-tau.

An independent study on Māori families with children and young persons with autistic spectrum disorder has been done by Massey University. In total, 19 families participated and provided a rich anthology from which a report is expected by November 2004.

11.4 Train more Māori disability service provider professionals and increase the advisory capacity of Māori

Te Puni Kōkiri reports its regional offices were involved in several projects, including helping:

• Tāmaki Ngāti Kōpō, an Auckland roopu of about 200 blind Māori, to identify gaps in their service delivery – as a result, it is expected an advocacy person will be appointed
• Māori kaimahi working in the health sector in Tauranga to receive cultural supervision and training, so they are able to provide kaupapa Māori services
• agencies working on the Waikato Employment Strategy for People with Disabilities, which focuses on rural-based disabled Māori.

The Department of Labour reports working with disability agencies to promote labour market participation by Māori.

11.5 Ensure that government funded or sponsored marae-based initiatives meet the access requirements of disabled people (and encourage all other marae-based initiatives to also meet those requirements)
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11.6 Support training and development of trilingual interpreters for Deaf people

No specific action has been reported.

11.7 Ensure Te Puni Kōkiri undertakes a leadership role in promoting the participation of disabled Māori

Te Puni Kōkiri reports participation in key government policies and programme development, to ensure the needs of disabled Māori are included.

Objective 12: Promote participation of disabled Pacific peoples

12.1 Increase access to, and quality of, both Pacific and mainstream service providers that deliver disability services to disabled Pacific peoples, their families and communities

The Ministry of Pacific Island Affairs reports working with government agencies, including disability service-related agencies, on the implementation and monitoring of agreed milestones in the Pacific capacity building programme of action.

The Ministry of Education reports that its Group Special Education has, with the support of the Ministry of Pacific Island Affairs, developed a Pasifika action plan. The implementation plan will be developed in 2004–2005.

12.2 Support disability workforce development and training for Pacific peoples, by training Pacific peoples as providers of disability information and services for their local communities

The Ministry of Pacific Island Affairs reports continued work on the Pacific Workforce Development Strategy.

12.3 Encourage Pacific communities to consider disability issues and perspectives and further their own understanding of disability through the development of community-based plans for disability issues

A national Pacific radio network, Niu FM, continues to highlight the services available to and the needs of disabled Pacific people.

12.4 Support training and development of trilingual interpreters for Deaf people
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12.5 Ensure the Ministry of Pacific Island Affairs undertakes a leadership role in promoting the participation of disabled Pacific peoples

No specific action is reported under these actions.

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

13.1 Ensure all agencies that support children, youth and families work collaboratively to ensure that their services are accessible, appropriate and welcoming to disabled children, youth and their families

A key activity in this area is the establishment of a High and Complex Needs Unit (funded jointly by the Ministries of Health and Education, and Child, Youth and Family). This considers the total needs of a disabled child or young person to get the most effective outcomes. To date, over half of the disabled children in this programme have been able to have their needs met by mainstream service provision. The next largest group have progressed from high and complex needs funding to adult disability support services.

13.2 Ensure that the Youth Development Strategy recognises the needs of disabled children and youth

The Youth Development Strategy Aotearoa, published in 2002, includes an objective of “enabling disabled children and youth to lead full and active lives”. The Ministry of Youth Development reports work to support this objective involving disability awareness training for youth development programme providers.

The Ministry of Youth Development also reports a number of meetings with disability providers to strengthen relationships. It has developed a Keepin’ it Real work programme which involves training Nelson and Waikato-based disability organisations to identify special issues for young disabled people around youth participation.

13.3 Conduct anti-discrimination and education campaigns that are age-appropriate and effective
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13.4 Establish a process for including advice from disabled people on disability issues for children and youth within relevant government agencies and Commissioners’ offices

No specific activity is reported on these actions.

13.5 Provide access for disabled children, youth and their families to child-, youth- and family-focused support, education, health care services, rehabilitation services, recreation opportunities and training

Child, Youth and Family reports a six-month seconded position was funded to help with disability-related work within the department. This position provided advice and assistance to social work staff working with families with disabled children, and liaison with other government agencies to ensure effective interagency collaboration and joint service delivery.

Sport and Recreation New Zealand reports funding support for the Halberg Trust Sport Opportunity programme. It reports that targets for support to disabled children in physical education were exceeded. It also contributed funding to the development of a programme and activities resource booklet by Scouting New Zealand. The content of the publication was sensitive and accessible to disabled people.

13.6 Improve support for disabled children and youth during transition between early childhood education, primary school, secondary school, tertiary education and employment

The Ministry of Youth Development reports ongoing contributions to the interagency youth transition work, led by the Department of Labour, on successful youth transitions for young disabled people.

The Department of Labour reports a partnership with CCS to undertake in-depth research and an assessment of barriers to career opportunities for young people. The Young People Designing their Own Future project will develop and support best practice models that facilitate interagency co-ordination.

13.7 Introduce ways of involving disabled children and youth in decision-making and giving them greater control over their lives,

13.8 Develop a range of accommodation options so that disabled young people can live independently,

13.9 Provide and evaluate educational initiatives about sexuality, safety and relationships for disabled children and youth
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13.10 Ensure the Ministry of Youth Affairs and Ministry of Social Policy undertake a leadership role in promoting the participation of disabled children and youth

No specific action is reported on these actions.

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

14.1 Promote women’s rights and provide opportunities for disabled women to achieve the same level of economic wellbeing and educational attainment as men,

14.2 Provide equitable, appropriate and welcoming access to services
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14.3 Support disabled women to live independent and secure lives in the environment and with the people of their choosing

No specific activity is reported on these actions.

14.4 Ensure that criteria and considerations for the health- and reproduction-related treatment of disabled women are the same as for non-disabled women

The Ministry of Health reports work to improve disabled women’s access to breast-screening services. After consultation with disabled women and service providers, national policy and quality standards were revised. These are still in the process of implementation.

14.5 Include the perspectives of disabled women in the development of all strategies

The Ministry of Women’s Affairs’ nomination service database has been upgraded to allow the names of women who identify themselves as disabled to be retrieved easily when searching for appropriate nominations. There are currently 20 women on the database who wish to be identified as disabled.

14.6 Ensure the Ministry of Women’s Affairs undertakes a leadership role in promoting the participation of disabled women, to improve their quality of life

The Ministry of Women’s Affairs launched the Action Plan for New Zealand Women in March 2004. The development work for this included consultation with disabled women and key agencies. Actions are identified which should improve disabled women’s participation.

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

15.1 Ensure needs assessment processes are holistic and take account of the needs of families/whānau as well as the disabled person,

15.2 Improve the support and choices for those who support disabled people
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15.3 Provide education and information for families with disabled family members

The Office for Disability Issues reports on an interdepartmental review of the payment to and support of family caregivers of disabled people.

15.4 Ensure that, where appropriate, the family, whānau and those who support disabled people are given an opportunity to have input into decisions affecting their disabled family member

The Office for Disability Issues reports part-funding the Standards and Monitoring Service to prepare a training programme to help disabled people’s parents and families to become better advocates and to understand how policy is developed and implemented.

15.5 Develop a resource kit for professionals on when and how to interact with families/whānau of disabled people,

15.6 Work actively to ensure that families, whānau and those who support disabled people can be involved in policy, service development and delivery and in monitoring and evaluation processes where appropriate,

15.7 Encourage debate around responsibility for caring, payment for caring and how to further recognise and value the caring role
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15.8 Provide families and those who support disabled people with information that is accurate, accessible and easily found

No specific activities have been reported for these actions.