We have made good progress in understanding and addressing disability issues through the framework outlined in the New Zealand Disability Strategy, and this work continues. Current action is orientated around five themes:

• Promoting citizenship, by fostering society’s ability to include disabled people. This requires initiatives to improve public awareness of disability, to raise the visibility and promote the leadership of disabled people, and to ensure disabled people’s rights are upheld (more about this on page 30).
• Building government capacity, by ensuring agencies have the necessary knowledge, skills and systems to address disability issues. This requires improved information collection and understanding of what will help to eliminate barriers to participation (more about this on page 32).

"Citizenship, capacity, services, participation, and diversity are the key themes of the New Zealand Disability Strategy"

• Improving disability support services, by ensuring the way they are provided enables disabled people to have ordinary choices and responsibilities (more about this on page 33).
• Promoting participation by disabled people in all areas of life, by identifying and maximising opportunities in all sectors of the community. This requires government agencies to take disability issues into account when making decisions in a wide range of sectors; for example, addressing longstanding barriers in transport, sports and recreation, relationship services or companies regulations (more about this on page 36).
• Addressing diversity of need, by acknowledging that, in addition to common issues, there is huge diversity among disabled people. It is also important to address the specific needs of disabled people’s families (more about this on page 42).

Promoting citizenship

Passing the New Zealand Sign Language Bill

For many deaf people, New Zealand Sign Language (NZSL) is an essential and natural language.18 The historic lack of acknowledgement of this has resulted in injustices. For example, deaf people report being denied interpreters in court proceedings, facing disorderly conduct charges where their use of NZSL was misinterpreted as aggressive behaviour, and receiving medical misdiagnoses.

"The NZSL Bill seeks official recognition of NZSL and deaf people's right to use their language."

In the past, sign languages were actively prohibited due to misconceptions. Research has since found that sign languages are real languages, and that lip reading involves a lot of guesswork and does not provide effective communication.

Deaf people often have low English literacy levels and low educational achievement, largely resulting from a lack of NZSL resources that could provide access to the education curriculum.

We have been responsible for developing a New Zealand Sign Language Bill. The first reading of the Bill took place in Parliament on 22 June 2004, and was supported by all political parties. The Bill at its first reading provided for:

• the official recognition of deaf people’s language, NZSL, as a unique New Zealand language with equal status to that of spoken languages
• the right for users of NZSL to use their language in legal proceedings
• principles to guide government departments in achieving the objectives of the Bill when providing information and other services to the deaf community
• regular reporting by the Minister for Disability Issues on the progress being made in implementing these principles for government departments.

"The Bill will send a strong message of fairness and inclusiveness"

The Justice and Electoral Select Committee reported back on the NZSL Bill in July 2005. Once passed, the Bill will be a major step in addressing the needs of many deaf New Zealanders, and will send a strong message of inclusiveness to both deaf people and the wider disabled community.

We need to progress this work, by:

• developing the capacity of the NZSL interpreter workforce, including how we can ensure consistent standards among interpreters
• reviewing funding mechanisms for NZSL interpreters
• improving NZSL access in education, health, employment, the justice sector and public broadcasting, using the New Zealand Disability Strategy work plans and reporting processes
• developing mechanisms to promote NZSL.

Fostering leadership

"A new nominations service will promote the appointment of disabled people to Crown boards and committees"

An important component of any campaign for an inclusive society is increased visibility of successful disabled people. This provides positive role models for the disabled and non-disabled population and helps to raise community expectations. Government also has a commitment to ensuring balanced representation on Crown bodies to reflect wider New Zealand society, and to strengthen connections with stakeholders.

To assist appropriate representation of disabled people at governance levels, Budget 2005 allocated funds to establish a nominations service within the Office, to promote the appointment of disabled people to Crown boards and committees. We need to establish and promote this service. We also need to create capacity-building initiatives to ensure that sufficient numbers of disabled people skilled in governance are available for such appointments.

Developing personal advocacy and communications services

"We are exploring options for advocacy services for adults with intellectual disabilities"

The National Health Committee’s seminal report on the lives of adults with an intellectual disability19 noted a gap in advocacy services for a group that often finds communication difficult. We need to continue exploring options for personal advocacy and communication services for people with an intellectual disability, in the context of wider work on advocacy for disabled people.

Supporting United Nations negotiations on a disability convention

In 2001, the UN established an ad hoc committee to consider an international binding convention to promote and protect the rights of disabled people. In May 2003, Cabinet agreed that New Zealand should take an active role in these negotiations and that we would co-ordinate the engagement in close association with the Ministry of Foreign Affairs and Trade, and in partnership with representatives of disabled people.20

We have been active in proposing context and texts aimed at strengthening the convention. We have also promoted partnerships between government and non-government organisations in national and international negotiations related to disability issues, and facilitated agreement between countries on a convention text.

"Our contribution towards a UN convention on the rights of disabled people sends a strong and positive message"

As noted, New Zealand has played a co-ordinating role at ad hoc committee meetings, and has now been appointed Chair of the committee. This is an honour and achievement for New Zealand, and a considerable commitment for future delegations. It is anticipated that the convention may be ratified by the end of 2008, although there are no guarantees on this timeframe.

New Zealand’s support for the UN convention is sending a strong message to disabled people in this country, that government is committed to fostering action towards disability issues. This has been recognised by, among others, the Disabled Persons Assembly.21 We need to continue New Zealand’s commitment to this important work.

Building government capacity

Developing and promoting a disability perspective tool

"Our disability perspective tool will be published online by the end of 2005"

We have developed a disability perspective tool for government agencies, to help them consider and address the impacts of any legislation, policy, programme or decision on disabled people. The tool includes supporting instruments and has been provided to agencies in draft form.

We need to progress this work by publishing the disability perspective tool online (we are aiming for publication by the end of 2005), regularly updating the resource, and promoting its use through, for example, giving seminars and providing awareness raising material.

Improving information research and statistics

Several government agencies that deliver disability support services have developed disability-related research programmes. Of particular note is a project to examine the cost of disability in New Zealand, co-funded by the Health Research Council and the Ministry of Social Development. We are a member of the project steering committee.

"Our stocktake of disability data will provide a good basis for policy development"

Many agencies collect data related to disability for administrative purposes. However, major variances in definitions, eligibility criteria for services and general approaches to disability limit the capacity of government to use this data to develop evidence-based advice on cross-agency issues.
Along with Statistics New Zealand, we are undertaking a stocktake of these data sources. The stocktake will include the systematic identification, documentation, and evaluation of the statistical potential of administrative and other data sources.

This work will help ensure the development of sound, evidence-based disability-related policy advice across government.

Improving disability support services

Disability supports include a wide range of service types

The current approach to disability has led to a concept of ‘disability supports’ as a particular set of services with common goals of participation and independence. They include:

• home-based support, including personal care and home care
• long-term residential facilities
• transport support, such as vehicle modifications or taxi services
• housing support, such as housing modifications and alarm systems
• equipment support, such as wheelchairs, hearing aids and Braille machines
• communication support, such as NZSL interpreters
• carer support, such as respite care
• (re)habilitation training for social, educational and vocational settings
• financial support, such as the Disability Allowance, aimed at meeting the specific costs of disability (note that this does not include general income support).

"The funding and delivery of disability supports is varied, and often conflicting, across agencies"

Funding for support services comes from 10 different Votes and the ACC account, as well as charity, gambling proceeds and volunteer services. In 2003/2004, government expenditure on these services amounted to approximately $2,689m. The bulk of provision is through:

• Ministry of Health (approximately $1,660m in the 2003/2004 year)
• Ministry of Social Development (approximately $393m in the 2003/2004 year)
• Ministry of Education (approximately $362m in the 2003/2004 year)
• ACC (approximately $274m in the 2003/2004 year).

Other agencies that fund some support services include the Ministry of Transport, Housing New Zealand Corporation, Child, Youth and Family, the Ministry of Economic Development, the State Services Commission and the Department of Internal Affairs – Lottery Grants Board.

Each of these funding agencies has its own goals, priorities, funding mechanisms and logic for providing support services. Some agencies provide services on a demand-driven basis according to an entitlement (ACC) and/or an income test (Social Development). Other services are provided out of a capped budget rationed on the basis of clinical, educational and/or vocational need.

There are serious problems with current systems for providing supports

"For disabled people, the current system leads to problems with access and provision"

Not surprisingly, historical differences in the systems for providing support services result in a lack of consistent or co-ordinated criteria for support across agencies and regions, and a wide range of eligibility mechanisms. This has profound and far-reaching implications for disabled people and their families, including difficulties accessing services, gaps in provision, a general lack of coherence across services, and inequities.

One of the most striking inequities is the disparity between aspects of ACC and Ministry of Health provision. This directly impacts on what type and how much assistance a disabled person and their family receive throughout their lives, solely based on whether an impairment is the result of illness, age or a congenital condition, or as a result of injury.

Services lack flexibility, equity and coherence

Consultation around the New Zealand Disability Strategy in 2001 raised many issues with the way supports are provided. In addition to the incoherence of the systems, the lack of flexibility and inability to accommodate diverse needs for all areas of life was criticised.

There is a consensus among disabled people that, despite incremental advances in some areas, the current framework for providing disability support services is still generally unable to support the whole-of-life outcomes to which disabled people aspire.

This is an ongoing area of tension for disabled people and, as far as they are concerned, the Strategy is meaningless if it does not correlate with high quality support service provision.

"The problems are not new, but they are critical"

We have undertaken lengthy scoping work for policy development to address these issues. This work has exposed issues in gaining traction across agencies, in part due to the diverse mix of policy drivers and general lack of co-ordination between policy makers, purchasers and providers around disability support as a whole. These problems are not new – there has been a long history of attempts to improve co-ordination. 22

The establishment of a review of long-term disability support services

In July 2004, the Government directed us to lead an interdepartmental review of disability support services. The purpose of the review is to advise government on how to improve systems for providing disability support services, so that they:

• are consistent with the New Zealand Disability Strategy
• are simpler and easier to access, more co-ordinated, fairly distributed, and more flexible
• improve outcomes for disabled people and their families.

This advice will propose structures and processes that allow people with similar impairments and associated needs to have improved and more equitable access to long-term support services, taking into account individual circumstances.

The scope of the review does not extend to considering changes:

• to the underlying principles of the ACC Scheme
• to the funding arrangements for health treatment or clinical services
• to the way shorter-term supports are provided (those needed for six months or less)
• to levels of income support
• to general taxation and levies.

Progress on the review

Our review of long-term support services aims to make services sensible, fair and effective

The Office has been talking with both the government and disability sectors to build on information previously gathered concerning current support services. This includes information concerning issues with existing supports, and the disability sector’s vision for the future.

This information is assisting us to consider how to best answer the questions being addressed by the review, and to advise on options for improving disability supports so that they are sensible, fair, and effective, and consistent with the vision of the New Zealand Disability Strategy.

Promoting participation in all areas of life

We encourage all government agencies to consider and address barriers to participation for disabled people, in their areas of influence. We do this through monitoring the New Zealand Disability Strategy implementation plans that every agency develops.

"We promote participation by disabled people in all areas of life"

We also give second-opinion advice on policy development across agencies. This involves a substantial commitment of our time in participating in working groups, and also involves consultation over Cabinet papers.

Our work focuses on promoting participation by disabled people in all areas of life, by identifying and maximising opportunities in all sectors of the community (as illustrated in figure 3.1).

Figure 3.1 Areas of Life

Figure adapted from a model developed by the National Health Committee, 2003

Supporting quality housing in the community

"We advise on how housing policy can support quality living in the community"

While most disabled people do not live in institutional settings, a legacy of segregation persists in some public policies and regulations around housing. This can limit the sorts of choices disabled people have about where and how they live. For example, sometimes access to supports is contractually connected to accommodation provision. This can result in disabled children being required to live in residential facilities designed for older people rather than receiving support at home, with their family.

There are also problems in the interpretation of building regulations. These result in houses in which disabled people live having to meet more stringent fire safety requirements than similar houses accommodating non-disabled people.

We need to continue to ensure that housing policy supports quality living in the community for disabled people, through giving advice on:

• access to support services and accommodation services
• the Building Act 2004 and review of the Building Code
• the implementation of the New Zealand Housing Strategy
• the review of the Residential Tenancies Act 1986
• developments in Housing New Zealand Corporation services, and more specialised home support and home modification services that allow disabled people to live well in the community.

Promoting quality health care

"We help identify ways to improve health services for disabled people"

International literature reviews conducted by the National Health Committee and the Mental Health Commission have found that disabled people have higher mortality and morbidity than non-disabled people. The same reviews show a lack of health promotion and illness prevention information available in accessible formats. There is also evidence of poor prescribing practice, and unnecessarily high levels of medication among adults with intellectual disability.

The Primary Health Care Strategy provides an opportunity to address these issues, through innovations in health care provision. However, we need to work with the Ministry of Health to build the skills and awareness of health care providers to capitalise on this opportunity.

Supporting access to transport

Many disabled people rely on public transport. In April 2004, the Human Rights Commission initiated a national inquiry into the accessibility of public land transport, as a result of high numbers of complaints by disabled people. The consultation report shows that at each point of a journey, from finding information about timetables and accessible services, to arriving at their destination, many disabled people face considerable problems.

These include difficulties boarding and getting off trains, buses or aeroplanes, and inadequate seating. Also, because most disabled people are on low incomes, the cost of more accessible transport such as taxis is a barrier.

"We support moves to improve the Total Mobility Scheme"

Local authorities operate a Total Mobility Scheme, which is jointly funded by the Ministry of Transport and local authorities. The scheme provides a subsidised transport service to people with serious mobility constraints. It provides disabled people with taxi vouchers, which usually cover 50 percent of the taxi fare, as well as providing funding assistance to taxi operators for the purchase and installation of wheelchair hoists in taxi vans.

However, the scheme is not currently available in many regions, and is often not promoted. Where it is offered, a growing demand means that the regional budgets are often capped. Furthermore, many disabled people cannot afford the subsidised taxi fares.

The Transport Strategy 2002 includes a commitment to improve the consistency and quality of the Total Mobility Scheme across New Zealand, and the development of a framework to measure improvements in mobility. We need to continue with our participation in this work.

Providing employment opportunities

Access to jobs is very high on the agenda for disabled people. It is seen as the key to breaking the vicious cycle of deprivation, and creating the inclusive society they aspire to. A great deal of activity has occurred in this area since the launch of the New Zealand Disability Strategy.

Work by the Department of Labour is aiming to improve the employment environment through promoting the value of a diverse workforce. It includes support for policies enabling work-life balance, including flexible working hours, to improve employment opportunities for disabled people and their families.

The Pathways to Inclusion Strategy was developed following extensive consultation with the disability sector in 2001. It is a plan for moving the emphasis in vocational services away from sheltered work to supporting disabled people into real jobs and meaningful participation in their community. The implementation of this Strategy includes repealing the Disabled Persons Employment Promotion Act 1960, and tightening provisions that allow disabled people to be paid less than the minimum wage.

The current structures for the Sickness and Invalids Benefits can provide disincentives for finding work. To help address this, the Ministry of Social Development is developing a new service delivery model, implementation of which began in mid-2005.

This model extends employment assistance to sickness and invalid beneficiaries and enhances case management. It is based on outcomes that disabled people and their families can achieve, whether it be full-time, part-time or intermittent employment and/or improved social outcomes.

It includes initiatives for facilitating continuation of or re-engagement with employment, including retraining, following the onset of disability due to accident or illness. Importantly, the model does not presume that disabled people, or those experiencing ill health, cannot work.

"We contribute to work across government to promote employment for disabled people"

The Ministry of Social Development is also developing transition services, which focus on supporting disabled people in the move from school to work and/or community participation. A separate pilot is working on transition to retirement for disabled people.

The State Services Commission runs the Mainstream Supported Employment Programme, which assists disabled people to gain work in the state sector.

We need to continue to monitor and feed into all of these work programmes, which are making major inroads into improving employment opportunities for disabled people.

Providing the best education

The Disabled Persons Assembly’s Annual Report 2003 outlined concerns that education funding generally does not follow a person through their education, with the result that parents of and disabled people themselves have to fight for disability support services at each level of education. Concerns have also been expressed about the special education funding framework not being flexible enough, and not always being consistently applied around New Zealand.

"We support the Ministry of Education's work to improve special education services"

The Ministry of Education’s Group Special Education currently provides a complex range of funding to schools and individuals. Historically, it has adopted an approach of making step by step improvements to these services, rather than conducting an overall review.

The Ministry of Education intends to put in place an action plan to improve aspects of its current services, and an outcomes framework that can be monitored to inform future developments. This should assist in building a body of knowledge about what practices are effective in special education. We need to continue working closely with the Ministry, to ensure progress in this work is consistent with the New Zealand Disability Strategy.

Ensuring disabled people can pay for what they need

Many disabled people who are not in paid work, or who are in low paid work, rely on income assistance (usually from ACC, Work and Income benefits or superannuation), while others are supported by partners. Often additional disability-related expenses consume what income they have and erode their general standard of living. Adequacy of income support provision to meet the extra costs of disability is a major issue for disabled people.

The Ministry of Social Development is currently undertaking work to modernise the benefit system including addressing the costs of disability. We need to continue to keep a close watch on this work and participate in the policy development, to ensure opportunities are maximised and that barriers are not inadvertently created.

Supporting citizenship

"We monitor legislation to ensure disabled people are not adversely affected"

Inadequate access to public spaces and environments can limit the ability of disabled people to enjoy public places as other New Zealanders do. The Building Act 2004 requires that newly-built public spaces meet access standards. However, there are issues with compliance and knowledge among local authorities who administer the Act and related Building Code. We envisage improvements in this area following a review of the Code.

We need to continue to maintain a watch on legislative amendments in this and a number of other areas, such as criminal justice, family and property rights law, for example, to ensure disabled people’s interests are not inadvertently affected.

Addressing diversity of need

Meeting the needs of disabled children and youth

"Support is available for disabled children and young people with care and protection needs"

In 2003, the United Nations Committee on the Rights of the Child recommended that New Zealand better integrate disabled children into mainstream education and other aspects of society. In recent years, the Human Rights Commission has received a number of complaints from parents about access to the services and support needed for disabled children.

The Department of Child, Youth and Family Services provides care and family support services for disabled children and young people, where there are substantiated care and protection concerns. These services may include respite care, therapeutic and behavioural support, assistance with material needs, and school and recreational activities.

They can also include ‘out-of-family’ placement where a family can no longer provide full-time care in their own home. In these circumstances the lead agency is a Needs Assessment and Service Co-ordination Agency, with the Department of Child, Youth and Family Services arranging for review through a Family Group Conference.

"A Budget 2005 initiative aims to provide support before care and protection needs arise"

Some people are concerned that families who wish to access support first need to reach a crisis point. A Budget 2005 initiative aims to support families before care and protection issues arise.

The Youth Development Strategy Aotearoa 2002 includes the objective of “enabling disabled children and youth to lead full and active lives”. It identifies key issues for young disabled people, including providing opportunities for connections with peers, in particular with young non-disabled people, and opportunities for meaningful work and ongoing education.

We need to closely engage with these areas of work.

Meeting the needs of disabled women

"We are working to promote further awareness of issues for disabled women"

In consultation for the development of the New Zealand Disability Strategy, disabled women reported that they received less home help assistance than men. This is because of an assumption they will be able to find ways of managing a role that has traditionally belonged to women. Similarly, they reported a lack of assistance with their parenting responsibilities, such as affordable childcare.

After having my baby and returning to the ward, people reacted to me really differently. Some people were very supportive. Others assumed that I was just a visitor from another ward or were amazed that I had actually been able to have my own baby. Some mothers I talked to even overheard comments like, ‘I think it’s disgusting, letting them have babies’.

Once I got home with my baby people would gaze into the pram and show surprise that my baby was ‘normal’. I was inundated with the standard ‘Oh, however do you manage?’. I got used to it and replied ‘Just like any mother … except I wheel instead of walk between chores’.23

The United Nations committee for the Convention on the Elimination of all Forms of Discrimination against Women (CEDAW), in its response to New Zealand’s 2002 progress report, included comments on issues for disabled women. It noted:

• a concern that the management of the sexual behaviour and reproductive health of women with intellectual impairment has been over-medicalised and over-managed, thereby compromising the rights of the women concerned
• that action should be taken to make sure disabled women do not suffer discrimination in the areas of employment and access to health care and loans
• that New Zealand should pay attention to ensuring married disabled women are able to be economically independent.

The Action Plan for New Zealand Women, launched in March 2004, includes a focus on disabled women. It states that the Ministry of Women’s Affairs will work with us to help promote the inclusion of issues for disabled women in the New Zealand Disability Strategy implementation plans. We are engaging with the Ministry to make progress in this area.

Meeting the needs of disabled Māori

"We are helping to tackle the issues for disabled Māori"

Disability support services have tended to reflect a lack of awareness and understanding of Māori culture and preferences, and difficulties in communicating with Māori clients. Māori often report discomfort in using services, or avoid using them altogether.
Historically, there has been a lack of attention to the causes of disability for Māori.

Poverty, poor housing and unemployment adversely affect health and wellbeing. Lack of educational achievement and disease/illness are reported as the most common causes of disability for Māori. Research has shown that Māori are also significantly over-represented in psychiatric disability figures ... The growing inequality in survival chances between Māori and non-Māori, and the differing chronic disease mortality rate in middle and old age must be considered, as these mortality trends coincide with the major social and economic differences between Māori and non-Māori. 24

These compounding and often overlooked causes of disability for Māori have resulted in a relative disadvantage compared with other disabled people. This is exacerbated by lack of culturally appropriate disability support services, coupled with a low uptake in service use.

We need to do further work across government to address these issues, including promotion of appropriate disability support services for Māori.

Meeting the needs of disabled Pacific peoples

"We are also addressing the issues for disabled Pacific peoples"

Mainstream support services for disabled people tend not to be appropriate for Pacific peoples. There is a lack of Pacific providers, access to relevant information and transport to services.

Pacific peoples, like Māori, experience a relative disadvantage compared with other disabled people.

This is particularly in the areas of socioeconomic status, service use, access to amenities (such as private transport and non-rental homes) and knowledge of the resources available to them… Pacific peoples are also more likely to have relatively severe levels of disability, to need or receive more disability-related assistance, and to have more severe disability at younger ages. 25

We need to improve information and communication, tackle discrimination and improve socioeconomic opportunities for Pacific people who are disabled.

Meeting the needs of disabled people’s families

"Families caring for disabled people need greater support"

In New Zealand, as in other countries, 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 has been 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 provision is available to assist family caregivers of disabled people, there is growing awareness that more support is needed. 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 key issues.

One April morning, after eight months of assessment, observations and countless appointments we were told that our physically perfect, attractive four-year-old daughter was ‘handicapped’. She was diagnosed as having autism and intellectual disability. The grief was almost all-consuming and our lives changed forever.

Our daughter’s inability to understand people and language caused her constant stress. She coped by organising her life into structured routines that only she knew. She is now nineteen and a valued member of our family. With a lot of energy from us and professional behaviour support, our daughter now has an acceptable communication method – we all write everything.

We still feel tremendous grief, but now it is for our daughter, not ourselves. Just coping is difficult for our family and for her. This has been compounded by the difficulties of the ‘system’ and an unaccepting community. With each milestone it feels as if we are the first ones to have got there.

After years of trying … we are faced with the task of supporting our daughter into adulthood. All we hope for is that our daughter be an accepted, valued member of our community who has the opportunity to contribute and participate. 26

"Issues include financial hardship, lack of information, service"

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 no support specifically for young carers.

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.

Current provisions generally do not allow family members to be formally employed as caregivers. ACC provisions do allow disabled people to engage immediate family members, 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.27 The Tribunal ordered that IHC had 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.

"We are leading a review of payments to and support for family caregivers"

In response to these events the Government asked us to lead a review of payments to, and support of, family caregivers of disabled people.
Initial consultation and scoping work 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?

In March 2004, Government approved statements of objectives for family caregiving of disabled people, and of responsibilities in meeting related costs. These statements were publicly released at the Caring for the Carers Summit in March 2005. 28

"Effective services, respite care, and advocacy are at least as important as payment"

We need to progress the review through two lines of work. First, analysing the current policy which makes family members ineligible for paid employment as caregivers. Second, developing a range of options for assisting family caregivers. We would then use these options as a basis for consultation with the disability sector.

This second line of work would go beyond the issue of whether or not family members should be employed as caregivers. This recognises that, overall, payment to caregivers is seen by many as less important than other measures, such as assessment of family caregivers’ needs, advocacy and information brokerage services, increased opportunities for family caregivers to enter employment, improved respite care, and help with specific costs.