Briefing for Ministers and Government
Disabled people are making significant contributions to all facets of New Zealand society. The ongoing failure to address significant barriers to participation in education, employment and wider community life however, means that New Zealand is missing out on a huge pool of leadership, innovation, talent, economic and human contribution.
We urge the government to create a priority with the same level of leadership, visibility, investment and targets that you’ve used to reduce poverty and manage the COVID pandemic. Without this scale of commitment, the social and economic changes required to ensure disabled people enjoy the same quality of life as their non-disabled peers will continue to be woefully inadequate.
In particular we note:
- After a decade of planning and pilots aimed at improving the disability support system, the current iteration - ‘Enabling Good Lives and Systems Transformation’ – lacks a clear plan and clear accountabilities for any form of nation-wide roll-out.
- As a result, disabled people their families and whānau get different types and levels of support depending on where they live. The promises of a disability support system based on self-direction, autonomy and control of the resources needed to have a good life remain empty and unfulfilled for most disabled New Zealanders and their families.
- The reality of disabled people’s lives reflected in the demographics of poverty, housing, education, employment, violence / abuse, health outcomes and community participation show the results of a society and system that is comprehensively failing to value the lives of disabled people.
- The transformational change needed to create a fully inclusive, accessible country needs the support of political leadership and the creation of momentum that can only come when Government elevates this issue to a much higher priority than at present. To this end we urge the government to publicly commit to, and track progress towards, five 7-year targets:
a. Decrease the unemployment rate for working age disabled people to the national unemployment rate, including specifically Māori disabled people.
b. Increase the average income of working age disabled people by 60%.
c. Reduce the rates of violence against disabled people to zero.
d. Ensure the full and equal participation of all disabled children, young people and adults in the regular, early childhood, compulsory and tertiary education sectors. All state schools to be fully inclusive, accepting all requests to enrol disabled children in their community, with classroom teachers taking full and hands-on responsibility for the education of all children in their classroom.
e. 100% reduction in reported discrimination against disabled people.
- Imagine Better is an independent disability research, training and advocacy organisation, governed and staffed by disabled people and close family members of disabled people.
System Transformation isn’t living up to its intentions or promise
Disabled people and their families have been promised a transformed disability support system that would help ensure they have the same good lives as non-disabled people. This promise has not yet been kept.
This has led to disabled people, their families and whānau experiencing very high levels of frustration, crisis, stress, confusion and financial challenge as a direct result of:
- Being told the system is going to change for over a decade now with no real change in most parts of the country.
- Being told there will be support to ensure they can have a good life, but finding that the ways disability support is assessed, funded and delivered, is at odds with this promise. The absence of coherent alternatives to traditional services compounds the problem.
- National inconsistency and inequities in the availability and provision of:
o levels of support for ‘navigating’ the system and community
o ability to self-direct
o funding packages
o the amount of time people working in the system have to spend supporting individuals, families and whānau.
- Poor and mixed communications about what’s happening – most families and many disabled people do not know what EGL and system transformation is, let alone what it means for the disability support system, what the pilots have demonstrated and what is proposed now.
- The promise of important resources like the development of family leadership, community support networks, improved transitions (e.g. leaving school), assistance with navigating the system and planning for a good life, assistance creating and commissioning tailor-made services and supports, and transformed service provision not being a reality for, or in any way touching the lives of, the vast majority of families, whānau and disabled people.
- The ongoing lack of effective essential services and options in many parts of the country especially inclusive education, transition from school, employment, accessible housing, respite, and non-institutional residential support. These gaps continue to lead, for example, to the crises and struggles for a significant number of families having to care for their adult children with disabilities.
- The lack of good nationally consistent processes for families and whānau to have their say in the development and rollout of disability support services and systems.
- A lack of clarity as to who is responsible for what, and where the single source of truth about systems transformation is.
- The bizarre approaches to disability in the Health and Disability Review which completely disregard the 10-year investment in planning EGL and Systems Transformation, ignore the clarion call from disabled people: “nothing about us without us!” and treat disability as a regional medicalised health issue to be managed by DHBs.
What needs to happen?
Because of this we suggest that Ministerial leadership is required to ensure:
- A timeline and plan with clear milestones, accountabilities and the significant investments required for all the proposed next steps and roll out of systems transformation.
- A defined workstream to address the “succession planning issue” for adults with high support needs who continue to be primarily supported by whānau – especially by aging parents.
- A defined workstream to address the inequitable differences between service, support, funding, flexibility, and facilitation options available in the pilot / Mana Whaikaha sites and the rest of the country: in short a workstream that will clearly show when and how some of the central pillars of Enabling Good Lives (self-direction, individual funding with high degrees of flexibility in how the funding is used, access to navigator / tuhono / LAC type support) will be made consistently and nationally available.
- A communication plan showing how all disabled people and their families and whānau will find out about what’s happening, when and what it will mean for them.
- Much clearer accountability for the leadership, decision-making and other key responsibilities for the change programme. This is a cross-government initiative developed in partnership with disability and family leadership. There are multiple departments, organisations, committees, officials, workstreams, and sites and this has led to significant and bewildering confusion about what’s happening. Make the single source of truth and one stop shop for information and participation a reality!
- The proposed shift of funding and responsibility for the disability support system into DHBs is rejected.
Disabled people’s potential to contribute still unrealised
Disabled people are making significant contributions to all facets of New Zealand society, but the failure to address significant barriers to participation in education, employment and wider community life means that New Zealand is missing out on a huge pool of leadership, innovation, talent, economic and human contribution.
- For example, a 2017 NZIER study (Reference 1) showed that:
The rate of unemployment for disabled people is 50% higher than the unemployment rate of the total workforce.
- Decreasing the unemployment rate for disabled people to the national rate would reduce the number of people on benefits by 14,000.
- This equalisation would add $1.45 billion to real gross domestic product, and save $270 million per annum from social support payment.
The costs and violence of an ableist society
Disabled people are under-represented in all the indicators of a good life, health and wellbeing (Reference 2). The failure to muster the resources, leadership, and political will to adequately address these appalling indicators of exclusion and violence against disabled people is a huge and largely unrecognised blight on New Zealand. These statistics speak of levels of deprivation and discrimination that render disabled people as some of the most marginalised people in our country.
- Life expectancy for New Zealanders with intellectual disabilities is between 18 and 23 years less than the general population, largely as a result of premature and avoidable deaths that a better organised and aware health system could prevent (Reference 3).
- Disabled people’s income is half that of non- disabled people (Reference 4).
- Almost 50% of young disabled people aged 15 - 24 are not in employment, education or training.
- Disabled children are 4 times more likely to experience violence than non-disabled children.
- Disabled women are up to 10 times more likely to experience sexual violence than non-disabled women.
- Disabled Māori are more underrepresented in the workforce, education and are more likely to have a poorer quality of life and material well-being than disabled Pākehā.
- People with neurodisabilities are overrepresented in the youth and adult justice systems.
- Disabled people are employed at half the rate of non-disabled people (Reference 5)
- Māori disabled people aged 15 to 54, compared to Māori non-disabled people aged 15 to 54, are (Reference 6):
o 2.0 x more likely to report discrimination when trying to get medical care
o 1.8 x more likely to report discrimination when trying to get housing or a mortgage
o 2.5 x more likely to report they do not have enough income for everyday needs
o 2.1 x more likely to report low life satisfaction.
- Disabled adults, compared to non-disabled adults, are (adjusted to take out differences in age and gender)(Reference 7):
o 2.3 x more likely to have an unmet need for primary health care due to cost
o 6.5 x more likely to have an unmet need for primary health care due to transport
o 3.8 x more likely to have an unfilled prescription due to cost
o 1.5 x more likely to have an unmet need for dental health care due to cost.
What needs to happen?
These indicators of poor health, poverty and exclusion are well known. Unfortunately, what little longitudinal data are available suggests that there has been little or no improvement over many years, despite the significant investment and efforts of disabled people, families, the government and the wider sector.
We suggest that the solutions to the failure of New Zealand to ensure disabled people do not continue to experience life as second-class citizens are well known. Good models exist for:
- a fully inclusive education system
- universal design of buildings, spaces and systems
- disability supports being run by and provided through organisations and systems controlled by disabled people, their families and whānau
- the completion of deinstitutionalisation – especially in residential care
- the creation of inclusive and diverse workplaces
- adequate income support
- a health system more finely tuned to meeting the needs of disabled people
- ways of ending discrimination and changing attitudes.
Approach disability with the same level of commitment as COVID and poverty
One of the key things missing is the level of political will and leadership that the Government has applied to other challenges like COVID and ending poverty. The scale and urgency of ensuring disabled New Zealanders have the same quality of life, health and wellbeing as their non-disabled peers is of similar dimensions to these issues. The costs of continuing to allow disabled people to be significantly worse off are just as life-threatening and unacceptable as the costs of failure to address poverty or pandemic.
The transformational change needed to create a fully inclusive, accessible country needs the support of political leadership and the creation of momentum that can only come when Government elevates this issue to a much higher priority than at present. To this end we urge the Government to publicly commit to and track progress towards five 7-year targets:
- Decrease the unemployment rate for working age disabled people to the national unemployment rate, including specifically Māori disabled people.
- Increase the average income of working age disabled people by 60%.
- Reduce the rates of violence against disabled people to zero.
- Ensure the full and equal participation of all disabled children, young people and adults in the regular, early childhood, compulsory and tertiary education sectors. All state schools to be fully inclusive, accepting all requests to enrol disabled children in their community, with classroom teachers taking full and hands-on responsibility for the education of all children in their classroom.
- 100% reduction in reported discrimination against disabled people.
1 Bealing M., Krieble T., Pambudi D., (2017) Valuing Access to Work NZIER.
2 The facts and figures that follow are about the costs and violence of ableism. They do not go any way towards painting a picture or telling the story of individual lives or the full lived experience of disability or disabled lives.
4 Unless otherwise referenced these statistics are taken from Murray S (2019) The state of well-being for disabled people, their families and whānau. CCS
5 Household Labour Force Survey, June 2019
Imagine Better provides resources that help disabled people, their families and whānau, and their allies, act for a more accessible, fair, and inclusive world. We want to help build a powerful, passionate, growing, well-resourced and effective disability rights and justice movement.
We do this through research and evaluation, training, advocacy, and providing creative tools, resources and evidence of what works for people who want to be part of social change making. This has a focus on action at an individual/family level (helping yourself or loved one get a good life, attend local school, find work, be treated fairly etc) through to a community/social/political level – working for attitudinal change, policy change, and to shift the dial on structural disabling forces like poverty, unemployment, poor transport, inadequate housing, abuse and violence, exclusion etc.
Imagine Better was founded in 2001, is a subsidiary of Access Ability Charitable Trust and receives no government funding. Imagine Better is one of three partners in the Family and Whānau Leadership Alliance.
Tony Paine CEO
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