Disabled Person-Led Monitoring of the UNCRPD

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What is Disabled Person-Led Monitoring Research?

The United Nations Convention on the Rights of Persons with Disabilities is an international agreement. It sets out what governments must do to make sure disabled people have the same rights as everybody else. You can read the Convention here.

In 2008, the Government of New Zealand signed the Convention, indicating its commitment to making disability rights real in Aotearoa New Zealand. More than a decade on, it is important to understand if, and how well, this is happening. Monitoring research is how we do this.

In 2018, the Donald Beasley Institute was appointed by the Disabled Persons Organisation Coalition (DPO Coalition) and the New Zealand Government as the research partner to carry out the monitoring research.

Over six years we will conduct inclusive and accessible research on behalf of the DPO Coalition that enables disabled people to share their experiences of human rights in Aotearoa New Zealand. We will also be monitoring the progressive realisation of the Convention at a systemic level. This means investigating systems and policies that have resulted in the violation of disabled people's rights.

In 2019, we began by interviewing disabled people and their families/whānau about their experiences of housing (2018 - 2020) and then health and wellbeing (2020-2021). These reports are expected to be launched in 2022. We have now started the planning for the next cycle of monitoring, where we are investigating disabled people's right to supports and services under the new Ministry for Disabled People.

It is important to know that this research is led entirely by disabled people. From the Project Lead and Research Assistant, to Monitors, transcribers, and participants, this project embodies the disability rights slogan 'nothing about us, without us' at every stage of the research process.

We will be using this webpage to publish updated information, including advertisements, calls to participate, research documents and forms, the final reports, as well as all of the content in accessible formats (audio, Easy Read, large print, New Zealand Sign Language and te Reo Māori).

My Experiences, My Rights: Supports and Services (2022-2024)

In 2022, we began the third cycle of the Disabled Person-Led Monitoring of the UNCRPD in Aotearoa New Zealand, investigating disabled people's right to supports and services.

In Aotearoa New Zealand, the Government provides disabled people with supports and services that ensure their human rights can be realised in a full and meaningful way. But sometimes disabled people don’t receive the supports and services they need. And sometimes they miss out altogether.

In this cycle of monitoring we are talking to disabled people with a range of different support and service experiences, as well as family, whānau, aiga and close supporters. We want to know what disabled people think and feel about existing supports and services, changes to the disability support system, Whaikaha - the new Ministry of Disabled People, and how these changes meet disabled people’s rights under the UNCRPD.

This research project has three parts to it. In the first part, we spoke with disability community leaders who have been involved in the establishment of Whaikaha - Ministry of Disabled People and/or the national roll out of Enabling Good Lives (EGL).

In the second part of the research, we hosted a range of focus groups to help us understand the supports and services experiences of specific groups within the disability community. For example, different types of funding and services such as Individualised Funding (IF) and residential services.

In this final part of the research we're asking disabled people, family, whānau, aiga and close supporters from around Aotearoa to answer a questionnaire about their supports and services experiences. You can find more information about the questionnaire below. 

To participate in the questionnaire, please complete this online form, or:

- fill out the questions in one of the alternative format documents and email it to us
- respond to the questions using NZSL via Seeflow Direct, 
- contact us to arrange a phone call session
- print the questionnaire, fill it out, and post it to us at the DBI

Strand Three Questionnaire - Questions (online)

Strand Three Questionnaire - Questions (Plain English)

Whenu Toru - Pukapuka Uiui - Mahere Uiui (Questions in Te Reo Māori)

Strand Three Questionnaire - Questions (NZSL)

Strand 3 Questionnaire (Easy Read)

Strand Three Questionnaire - Questions (Large Print)

Strand Three Questionnaire - Questions (audio)

Strand Three Questionnaire - Questions in Braille (upon request)

Strand Three Questionnaire - Advertisement (Plain English - word doc)

Whenu Toru - Pukapuka Uiui Tuhika Whakatairaka (Advertisment in Te Reo Māori)

Strand Three Questionnaire - Advertisement (NZSL)

Strand 3 Questionnaire - Advertisement (Easy Read)

Strand Three Questionnaire - Advertisement (Large Print)

Strand Three Questionnaire - Advertisement (audio)

Strand Three Questionnaire - Advertisement in Braille (upon request)

Disabled Person-Led Monitoring Reports

Below are three monitoring reports from the previous monitoring cycles (2018 - 2022). 

Long Report:

 Executive Summary:

 Key Findings:

Housing for Disabled People: Family/Whānau and Close Supporter Perspectives Key Findings and Recommendations 1/23 Aotearoa New Zealand is a signatory of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). This means the New Zealand Government has agreed to implement the Convention’s provisions, monitor progress, and report back to the Convention’s Committee on various issues affecting disabled people (Article 33). In 2018, the Donald Beasley Institute (DBI) was commissioned by the Disabled People’s Organisations (DPOs) Coalition to independently monitor the housing experiences of people with complex disabilities through the perspectives of their family, whānau and close supporters. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 2/23 Articles 19 and 28 of UNCRPD recognise that disabled people have the “right to live in the community with choices equal to others” and the “right to an adequate standard of living.” A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 3/23  Key Finding 1: Many families felt they had little to no choice or control over housing and support at home. Adequate financial resources and knowledge of how to navigate the system increased their sense of choice and control. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 4/23  Key Finding 2: There are not enough affordable and accessible houses within the housing market, including private and social housing (Kāinga Ora). A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 5/23 Key Finding 3: Some family members experienced a lack of support, fatigue, ongoing anxiety, and concern for the wellbeing of the disabled person they were caring for. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 6/23 Key Finding 4: Women tended to be the primary caregivers of people with complex disabilities. The gendered nature of care can result in a compromised standard of living for both the disabled person and the caregiver. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 7/23 Key Finding 5: Negative attitudes towards disability held by people in positions of power, such as builders, housing developers and property managers, created additional barriers to housing for disabled people and their families. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 8/23 Key Finding 6: Enduring, positive, and consistent relationships with service providers and support workers played a significant role in the wellbeing of disabled people and their families. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 9/23 Key Finding 7: A lack of accessible housing and in-home support meant that some younger people with complex disabilities were placed in aged-care facilities. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 10/23 Key Finding 8: Funding for housing modifications is limited and does respond to disabled people’s changing needs over time. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 11/23 Key Finding 9: Even though families felt access to the community was important, lack of affordable and accessible housing meant it could not be prioritised. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 12/23 Key Finding 10: There was disappointment that the UNCRPD had resulted in little change for people with multiple and complex disabilities. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 13/23 Key Finding 11: Collective action and peer support were identified as important and powerful strategies for advocacy. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 14/23 Recommendation 1: Embrace a kaupapa Māori approach to ensuring people with complex disabilities can enjoy adequate housing and living conditions. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 15/23 Recommendation 2: Take a life-long approach to improving housing and living conditions that includes family and whānau members as co-designers. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 16/23 Recommendation 3: Increase the universal design quota of Kāinga Ora new builds and incentivise accessible housing in the private rental market. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 17/23 Recommendation 4: Engage family and whānau members of people with complex disabilities in funding allocation processes. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 18/23 Recommendation 5: Increase in-home support services and provide age-appropriate care for people with complex disabilities. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 19/23 Recommendation 6: Prioritise disabled people and their families and whānau in accessible Kāinga Ora houses. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 20/23 Recommendation 7: Address the inequalities between MoH and ACC funding models. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 21/23 Recommendation 8: Provide sufficient financial support for families and whānau, including single- parent families, who are caring for disabled children or adults. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 22/23 Recommendation 9: Update the Building Act (2004) and Building Code to align with the UNCRPD, including accessibility standards for private housing. A Monitoring Report on Housing Experiences of People with Complex disabilities in Aotearoa New Zealand from Family, Whānau and Close Supporter Perspective 23/23

Long Report:

Short Report:

 Key Findings:

Image one: My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand Key Findings and Recommendations 1/20 Aotearoa New Zealand is a signatory of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). This means the New Zealand Government has agreed to implement the Convention’s provisions, monitor progress, and report back to the Convention’s Committee on various issues affecting disabled people (Article 33). In 2018, the Donald Beasley Institute (DBI) was commissioned by the Disabled People’s Organisations (DPOs) Coalition to independently monitor the health and wellbeing experiences of disabled people in Aotearoa New Zealand. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 2/20  Article 25 of UNCRPD recognises disabled people’s right to the highest attainable standard of health. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 3/20 Key Finding 1: Many disabled people experience financial, physical, mental, communication and sensory barriers when accessing affordable, high-quality healthcare and services. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 4/20 Key Finding 2: The health and disability support system is complex. It is often difficult for disabled people to navigate. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 5/20 Key Finding 3: Many disabled people have limited choice and control over the services, treatment and medication they receive. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 6/20 Key Finding 4: Some disabled people experience barriers when accessing public health programmes and sexual or reproductive health services. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 7/20 Key Finding 5: A lack of disability support and specialist care in rural areas has been detrimental to the health and wellbeing of disabled people. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 8/20 Key Finding 6: For many disabled people it is difficult to get an accurate diagnosis and treatment. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 9/20 Key Finding 7: Health and disability professionals often lack the disability training and awareness needed to provide disabled people with high-quality health care. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 10/20 Key Finding 8: The negative attitudes of health professionals towards disability can be a barrier to disabled people receiving high- quality health care. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 11/20 Key Finding 9: Many disabled people cannot access private health and life insurance because their disability is considered a pre-existing condition. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 12/20 Key Finding 10: Many disabled people covered by ACC (as a form of insurance) find it complex, inconsistent and overly focused on rehabilitation. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 13/20 Key Finding 11: A lot of disabled people are afraid of being denied healthcare due to prejudices held by health care professionals. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 14/20 Recommendation 1: The implementation of a more equitable health and disability support system that does not discriminate on the basis of disability. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 15/20 Recommendation 2: The implementation of a more holistic and equitable approach to disabled people’s healthcare, including free primary healthcare and dental care. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 16/20 Recommendation 3: The provision of equitable health and disability supports and services in regional and rural areas. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 17/20 Recommendation 4: Improved disability rights training and awareness within tertiary health programmes and ongoing professional development. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 18/20 Recommendation 5: Improve and introduce insurance-related legislation that prohibits discrimination on the basis of disability. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 19/20 Recommendation 6: Ensure all health-specific policy and legislation is developed using a rights-based framework according to the UNCRPD. My Experiences, My Rights: A Monitoring Report on Disabled People’s Experiences of Health and Wellbeing in Aotearoa New Zealand 20/20

Contact

Twitter: DBI_tweet

Project Lead
Dr Robbie Francis Watene
027 529 2114
rfrancis@donaldbeasley.org.nz

Junior Research Fellow
Umi Asaka
021 109 3218
uasaka@donaldbeasley.org.nz

 

Project Artwork by Eve McCoy 

 

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