Disability Sector Inquiries, Research, Petitions, Surveys and Results, Have your say!
Calling for Expressions of Interest for a new Accessibility Advisory Group
Kia hiwa rā kia hiwa rā
Kia kōkiri ake, kia mataara.
He karanga atu ki te ao whānui, ki te ao whaikaha.
Mauria mai ōu whakaaro rangatira ki tēnei kaupapa whakahirahira nau mai e te iwi e.
Be watchful, be alert. Rise up, come forward, be counted, be alert. A call going out to the world, to the disabled world. Bring your chiefly thoughts to this important discussion. We welcome all.
Are you a creative and strategic thinker with an interest in driving solutions to address accessibility barriers? We need 10 people from the disability community, tāngata whaikaha Māori and whānau and families with a deep understanding of accessibility to form an Accessibility Advisory Group.
The Ministry of Disabled People – Whaikaha is setting up the Accessibility Advisory Group to help guide our Accessibility Work Programme. We want to bring together a diverse group of people who are passionate about accessibility who will give us advice and ideas on projects and initiatives and how to deliver them.
Interested?
To find out more about how to apply and alternate formats, please go to: https://www.whaikaha.govt.nz/aag
Expressions of Interest Forms are due on Monday 3 November.
Neurodivergent & Ehlers-Danlos
Research participants wanted for a one to two hour, 1:1 interview to chat about your ordinary and everyday life with these diagnoses:
- Diagnosed EDS (any type) and ADHD and/or Autism Spectrum
- Aged 30-50
- Can speak English and lives in New Zealand
Flyer here. For more information, email: Tina.Peters.3@massey.ac.nz
Neurodiversity Survey – Share Your Voice
Are you neurodivergent or know someone who is? Aged 16 or older? Researchers Dr Joanna Chu, Professor Anita Gibbs, and Josie Tait invite you to take a 5–8 minute survey to share your hopes and dreams for neurodivergent people — whether it’s about yourself, a friend, whānau member, student, or partner. Your insights will help shape a better understanding of what “living well” means and what supports are needed. Click here for the flyer. Link to survey here.
Proposed skill standards for the NZ Certificate in Disability Support (Level 3)
The proposed skill standards are now ready for national review and feedback. These proposed standards respond to the evolving needs of the disability sector and aim to strengthen the capability and development of the workforce. They focus on foundational areas essential for delivering high-quality, person-directed support to disabled people in Aotearoa . Please click here.
Transformation through Mahi Tahi: Enhancing Support for Tertiary Students with hidden disabilities – help shape a more inclusive future for tertiary education. Flyer here.
We are looking for students who:
• Have diagnosed or undiagnosed hidden disabilities (e.g., ADHD, dyslexia, mental health conditions, chronic illnesses, neurological disorders, learning differences)
• Experience a hidden disability for 6+ months
• Are currently enrolled in any tertiary institution in New Zealand
IHC Seeking Interviewees for Research on Intellectual/Learning Disabilities in NZ – IHC is seeking interviewees to share their valuable insights on income, poverty, living situations, and employment. The findings from these interviews will help inform our advocacy efforts for individuals with ID/LD, their families, and whānau. Our focus areas include Wellington and surrounds, Auckland, Whanganui, and Featherston. The first project will explore income, poverty, and living situations, and we are particularly interested in interviewing families who have a family member with an ID/LD. The second project will examine the employment experiences of people with ID/LD, where we seek to interview the individuals themselves.
We aim to gather perspectives from a diverse range of backgrounds, including Māori, Pacific, and those from various urban and rural settings. Interviews will last up to two hours, with the possibility of follow-up online interviews and requests for feedback (up to one hour). Participants will receive a $150.00 voucher as a token of appreciation. Geoff Stone from Ripple Collective will conduct face-to-face interviews and will travel to the interviewees. He is available to interview people outside of work hours.
Email shara.turner@ihc.org.nz for further information or to be shortlisted.
Public Consultation for the review of the End of Life Choice Act (2019) – The End of Life Choice Act 2019 (the Act) is the law that makes assisted dying legal in New Zealand. It came into force on 7 November 2021. The Act is administered by the Ministry of Health | Manatū Hauora, and the Assisted Dying Service is delivered by Health New Zealand | Te Whatu Ora. The Act sets out the legal framework for assisted dying, including eligibility criteria, processes, safeguards to protect patients and practitioners, and the establishment of administrative bodies to oversee and monitor the provision of assisted dying.
The Ministry of Health is currently undertaking a review of the operation of the Act, to be completed in November 2024. Further information on the review can be found in the Terms of Reference.
To complete the survey click here.
Public Bathrooms Survey – this survey has been commissioned by the Building Research Association of New Zealand (BRANZ), which is reviewing the Building Code bathroom standard for the first time in 30 years. Buildings such as offices, libraries, shopping malls and recreation facilities should have appropriate bathroom spaces and facilities for personal hygiene that are conveniently located and accessible to everyone. Have your say using this link.
PhD Research into Single Parent Families raising disabled children – Tenā koe, my name is Jane Lee, and I am a PhD student at Massey University, School of Social Work. I am also a single parent with a child on the autism spectrum. I am researching social support and social integration among one-parent families with disabled children in Aotearoa New Zealand.Information Sheet here.
If you are:
- A single parent of a disabled child
- Have previously been in a relationship and have been a single parent for 12 months or more
- Have full-time care or shared care arrangements for your disabled child
- Receive the Ministry of Social Development Child Disability Allowance, or qualify for carer support for your child via your local NASC
- Are currently living in Aotearoa New Zealand and are able to communicate in English
I would like to invite you to participate in an anonymous online survey: https://massey.au1.qualtrics.com/jfe/form/SV_dd830fxV4qybAfc
For more information contact: j.lee6@massey.ac.nz
Auckland Council Representation Review
Auckland Council’s representation is extremely complex across council, wards and boards. They would like direct input from disabled people and their families as part of their representational review which may include local board reorganisation.
Representation Review Project – How we represent you supporting material NZSL https://youtu.be/lUccs9LY9oI
Representation Review Project – How we represent you Feedback form NZSL https://youtu.be/PN2ZcGX5RvI
Every six years, Auckland Council must conduct a review of representation arrangements to ensure they are fair and effective.
For the Governing Body, this must include:
• the number of councillors
• whether they are elected at large (from across the whole of Auckland) or by ward.
• for any wards, their names, boundaries and number of members elected in each.
For local boards, this must include:
• the number of members per board
• whether they are elected at-large (from across the whole of the board area) or by
subdivision
• for any subdivisions, their names, boundaries and number of members elected in each
• the name of the local board.
What a local board reorganisation plan is
Auckland Council can undertake a reorganisation plan to review the number of local boards for consideration by the Local Government Commission (LGC)
A local board reorganisation plan includes:
• the total number of local boards
• their representation arrangements.
If you would like to have your say and make a submission please follow this link: https://yoursay.aucklandcouncil.govt.nz/jfe/form/SV_bNulS0VTZdFR5lQ?CPLink=DC
Invitation to participate in a survey – PhD Research project: “An examination of mobility impairment and accessibility to public buildings”
Hello, my name is Margaret June Stefanitsis, and I am a doctoral candidate researching accessibility to public buildings (all buildings except residential homes) for people with mobility impairments. This includes those with a lower body physical disability that affects their movement, so they need to use a mobility device (wheelchair, mobility scooter, walker, cane, or crutches).
Accessibility to these buildings has become a central issue for persons with mobility impairments globally, however many able-bodied people (including legislators) have no idea of the apprehension of accessibility that mobility-impaired people experience when approaching a building for the first time.
I am currently recruiting participants to survey for this research and the questions being asked will help me to collect data on this specific issue for the first time in New Zealand. I would be very grateful if you would help me with my research, which I will be sharing with legislators and asking them for their help to change existing laws/regulations that do not enforce the removal of barriers in buildings and their surroundings. If we can achieve this, it will allow people with disabilities to have a better quality of life.
If you are interested in participating in this research or have any questions, please contact me, masseystudent7956@gmail.com or Phone: 021 292 2481.
Here is the Link to the Survey
https://forms.gle/ALb31Ya4gQt51rc57
Health and Disability Act and Code Review – We want to know what you think about how we can make the Act and the Code better. Closing date for feedback is 5pm, Wednesday 31 July 2024.
We ask questions on five topics:
- Supporting better and equitable complaint resolution.
- Making the Act and the Code more effective for, and responsive to the needs of, Māori.
- Making the Act and the Code work better for tāngata whaikaha | disabled people.
- Considering options for a right of appeal of HDC decisions; and
- Minor and technical
You can view easy read links here. You can answer all or some of the questions in the following ways: Complete our online survey, Download the online survey at https://review.hdc.org.nz and send your completed form to review@hdc.org.nz or PO Box 1791, Auckland, 1140; or send us your thoughts to the email or postal address
Reports
Aotearoa New Zealand Health Status Report
Health New Zealand | Te Whatu Ora has released the Aotearoa New Zealand Health Status Report 2023, a review of the current health of all New Zealanders. The report highlights some continuing challenges for the health sector, such as the country’s ageing population and gaps in health outcomes for some population groups. Read the full report here
Petitions
Surveys
Including Tāngata Whaikaha Māori and Disabled People in Policy Development (Added February 2024)
Are you a disabled person? Do you experience disability? Are you tāngata whaikaha or whānau hauā? Do you have a disabled person within your whānau? Do you live in Aotearoa, NZ?
We need you to tell us your story. We want to listen to what helps you have choices around housing. We want to understand what helps you experience control in your housing journey.
Sick of tick-box surveys? We have developed an online, accessible tool that we hope will help you share your thoughts, experiences and stories. This is a survey with a difference. Get ideas about what you might say by listening to or reading what others have said in response to the questions. Survey link Website link (for more survey information)
How do we get autism support right in Aotearoa New Zealand? We want to understand your experiences and opinions of current supports and what you think is needed for the future. Have your say! Take part in an anonymous survey that will take up to 20 minutes for most people to complete. The survey is open to autistic people, parents/carers, family/whānau, professionals, researchers, and policy makers. You can go in the draw to win one of 100 Prezzy Cards valued at $25 each. To find out more and to complete the survey online click here, or copy the following address into your web browser: https://www.surveymonkey.com/r/RGMMRLZ
Alternative survey options – You are welcome to have a support person help you complete the survey, Paper copies and easy read versions of the survey are available. You can also complete the survey with support from a member of the research team via a telephone, Zoom, or face-to-face interview. Completing the survey in this way will mean that your responses will not be anonymous but will be confidential to the research team. We will endeavour to support completion of the survey in another language upon request.
This research has been approved by the Te Herenga Waka—Victoria University of Wellington Human Ethics Committee (Application number: 30857) To find out more about alternative survey options or if you have any questions you can contact the research team on: research@autismnz.org.nz or 021 190 6070. Please feel free to share this with anyone you think would be interested in participating.
Research and Reviews:
Digital Health Access, Inclusion, and Equity for Middle Eastern, Latin American and African Women in Aotearoa, New Zealand; You are invited to participate in a community hui, part of a research project exploring the experiences of women from
Middle Eastern, Latin American, and African (MELAA) communities with digital health information. We seek to
understand how MELAA communities, particularly the women, engage with the Internet to support their health
practices. We want to learn from your experiences using the Internet.
Developing a Twin Track Response to Family and Sexual Violence Against Wāhine Whaikaha, D/deaf and Disabled Women Project –Donald Beasley Institute invite you to register your interest in research about developing a twin track response to family and sexual violence experienced by wāhine whaikaha, D/deaf and disabled women. The aim of this research is to co-design a model that can help change the way supports and services work, so they are rights-based and responsive to our disability community. In this part of the research we want to talk to 20 people who identify as women – wāhine whaikaha, disabled and D/deaf women – who have experienced family/sexual violence (inclusive of gender diverse, trans and non-binary disabled communities). Family, whānau, aiga and close supporters of disabled people who have experienced violence are also invited to share their experiences. All participants must be over the age of 18 and be able to provide informed consent to participate. For research information in accessible formats and to register your interest, please go to the Donald Beasley Institute website.
Please visit the project webpage for more info.
Child Youth and Wellbeing – update September 2022 – The Government has released its first statutory Annual Report for the Child and Youth Wellbeing Strategy. Last year a voluntary report was published, which established baseline data for the majority of the Strategy’s 36 child and youth wellbeing indicators. Also released today is the third Child Poverty Related Indicators (CPRI) Report. Click here for the Update and Strategy Review
Feedback and reports:
Covid -19 Inquiry Pānui – Click here
State of Care Report – 2022 In 2020-21 more than 1,600 family carers completed our first State of Caring survey. It is so valuable to have your input into what is important to carers. We are repeating this survey every two years to understand how carers are doing: their wellbeing, what help they get, what help they need, and their concerns. Phone Carers NZ’s National Resource Centre during business hours 0800 777 797 or emails centre@carers.net.nz
Abuse and Neglect of Disabled People – 2 Documents released 3 December 2021
The reports set out the evidence available on the causes and impacts of violence and abuse against tāngata whaikaha Māori and disabled people. They lay out the serious and urgent problems for those who are not aware of them, and offer a Te Tiriti focused and human rights road map to tackle these problems. The reports are focused on a twin-track approach, where mainstream general services are disability literate, while specialised services are also available with a focus on upskilling people – shifting perceptions of disability, and co-designing everything with disabled people.
Whakamahia te Tūkino kore Ināianei, ā Muri Ake Nei (Acting Now for a Violence and Abuse Free Future)
Whakamanahia Te Tiriti, Whakahaumarutia te Tangata (Honour the Treaty, Protect the Person)
Diabetes – Draft Action Plan 2022 – 2027
Health and Disability Survey 2023 – Read our feedback on this proposed survey
The Power of Freedom: How personal budgets for social services are transforming lives (added 27 August 2021)
This report has described a fundamentally different funding model for public services which gives control and responsibility to recipients of support services. Traditional models of publicly-funded disability support treat recipients as dependents, with services delivered by people employed by a third party. The company, under contract with MoH, not the services recipient, has the final say on who delivers services on what terms. If the disabled person needs different services or wants to buy unfunded equipment or other things to support them, they must ask permission. IF uses personal budgets to put the recipients of disability support in control. IF turns services recipients into paying customers. The result is a transformation in the quality of services and quality of life for recipients and their families. Spending must be within well-defined limits, giving individuals flexibility to tailor support to their needs with the confidence their needs will be met. Relative to traditional funding models, research suggests IF offers large well-being gains through greater flexibility and responsiveness to needs, and higher quality of service. It is less clear whether IF also delivers fiscal benefits. Click here for the report.
Summary of Questions from Community Housing Collective Housing Hui for disabled people and their families – February 28th 2020 Otahuhu Town Hall
Click here for the questions that were asked
Counting for Something report by Sharon Brandford (added 3 December 2020)
How New Zealand agencies record, investigate and review deaths of people with intellectual disability.” This is a comprehensive and timely piece of work given the recently release Ombudsman’s report. Click here to read it.
A Good Start in Life (added 15 September 2020)
A Good Start in Life is a collaborative cross-government action research to understand the barriers and enablers to partnership working in Aotearoa/NZ. Click here for the link and documents
Sexual violence prevention initiatives for disabled people in New Zealand report (added 15 September 2020)
The purpose of the project was to identify and assess sexual violence prevention initiatives that are
available for disabled people in New Zealand, to identify any gaps, and to provide advice on what is
needed for disabled people in the future. We completed over 30 interviews, held a hui and ran a survey for organisations and individuals from the disability and sexual violence sectors. These informed our stocktake of sexual violence prevention initiatives for disabled people and allowed us to identify gaps, future priorities, and enablers and barriers to service. We also completed a rapid review of literature to determine key success elements
for sexual violence prevention initiatives for disabled people. These were used to assess the initiatives
identified in the stocktake. To read the report click here.
Voices Project Report by Lisa Martin Complex Care Group (added 13 July 2020)
The Voice of the severely disabled, those with very high and complex needs, the non-verbal – is ‘spoken’ by parents and those who know the disabled person well and can communicate with them effectively. In order to ensure New Zealand has a future system of disability support which is appropriate for all disabled people – including the most vulnerable disabled New Zealanders – these voices must be heard. This report contains a plethora of valuable insights into what works, and what doesn’t for the profoundly disabled and the families supporting them. Parents’ concerns focused on these three overarching areas in particular: • Lack of targeted and practical supports, particularly respite • Eligibility criteria which is misaligned to some severe disabilities and needs • Desperation that despite trying to raise awareness of their circumstances and submitting their concerns to decision makers, the issues parents raise are not addressed.These parents are the voice of their children – they speak on their behalf. Click here for the pdf version and here for online version.
Down Syndrome International DSi are proud to launch the first International Guidelines for the Education of Learners with Down Syndrome (added 31 July 2020)
Health and Disability System Review (added 18 June 2020)
Responding to neurodiversity in the education context (added 12 June 2020)
An integrative literature review conducted by Donald Beasley Institute NZ. Click here for the full pdf document
Disability Action Plan 2019-2023 released (added 20 November 2019)
The Disability Action Plan presents priority work programmes and actions developed through a co-design process by government agencies, disabled people and their representative organisations. The work programmes and actions will advance implementation of the United Nations Convention on the Rights of Persons with Disabilities and the New Zealand Disability Strategy 2016-2026. This is the Disability Action Plan 2019-2023 Putting the New Zealand Strategy into action. It was launched on 14 November 2019 by the Minister for Disability Issues. Click here for the website.
New Zealand Autism Spectrum Disorder Guideline Update
The NZ Autism Spectrum Disorder Guideline (click here) provides evidence-based information for people on the autism spectrum, their family and whanau, as well as health, disability and education professionals and social service agencies. It includes information about good practice that is evidence-based and aims to improve the health, educational and social outcomes for people with ASD.
Te Pou launches new framework for supporting people on the autism spectrum (added 18 June 2019)
Te Pou has developed Te Tau Tītoki: A framework for supporting people on the autism spectrum. The new framework describes the essential knowledge expected of anyone providing autism support or education. It brings to life recommendations around professional learning and development in the New Zealand Autism Spectrum Disorder Guideline. The framework was developed using an extensive co-design process and includes stories from autistic people and whānau from around New Zealand describing what they value in support and in the workforce.
When I am no longer alive – Thesis Summary – Parents of Disabled adults demand better support – research by Hemant Thakkar
Most parents want their children to outlive them. Hoping your child dies before you is a strong sign of how distraught some parents feel, as the University of Auckland graduate Hemant Thakkar found out during the research for his PhD. His thesis confronts the concerns of the parents of disabled adults about what will happen to their children when they die and he hopes his research will play a role in improving outcomes for people in this situation. Click here for more information. Click here for his thesis summary.
