Disability Sector Inquirys, Research, Petitions, Surveys and Results, Have your say!

Have your say!

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


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


Carers New Zealand – The “We Care” campaign seeks a home in government for carers – a Minister or Commissioner – and true commitment to improving carers’ physical, mental, and financial wellbeing. Carers NZ encourage you to sign their petition here.


Exploring the experiences of people from the Indian Sub-Continent, who have developed Type II Diabetes while prescribed atypical antipsychotic medications. Click here for details.

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) 

Epilepsy New Zealand are inviting you to take part in a survey by Epilepsy New Zealand to measure the social impact of living with epilepsy. – survey participants will go in the draw to win one of three Ultimate Ears UE BOOM 3 Wireless Portable Bluetooth Speakers! The purpose of the survey is to improve the quality of lives of people living with epilepsy or / and unexplained seizures, in Aotearoa New Zealand. ENZ are wanting to find out what is most important to your overall wellbeing, as well as how supported, safe, and empowered you feel, so that services can be tailored to better serve them, and so that any inequities are better understood and mitigated.
No matter your involvement with Epilepsy New Zealand – big – small – not at all – we’d love to hear from anyone who meets the following criteria:
·      You have epilepsy, or unexplained seizures, or care for someone who does.
·       You are aged 16 or over.
·       You live in Aotearoa New Zealand.

To access the survey click here.  For FAQ’s about the survey click here.

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 optionsYou 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.

Communication needs during transition to adult services research – My name is Elena Boikov. I am completing a small research project as part of my Bachelor of Speech and Language Therapy with Honours degree in Massey University’s Institute of Education. This project is being supervised by Associate Professor Sally Clendon. Elena Boikov is a fourth-year student in speech and language therapy at Massey University. For her honours research, Elena is interviewing whānau of young adults with communication needs who have recently (within the last three years) transitioned beyond school and into adult services. If you are interested and for more details, please email her on: Elena.Boikov.1@uni.massey.ac.nz

Click here for flyer. Click here for information sheet.

Sibling Whaikaha – Disability Research. My name is Sarah Knight, and I am currently conducting research as part of my post graduate studies in Psychology at Massey University. My research is on the topic of the unmet needs of siblings of children with Autism Spectrum Disorder, Down Syndrome, and/or Cerebral Palsy. The purpose of this research is to find out if siblings of children with disabilities have unmet needs and if so, what these unmet needs are. This research serves as a starting point for understanding the experiences of the Aotearoa/New Zealand sibling population so that the needs of this population can be advocated for and support for siblings developed. Information SheetFlyer

Behavioural interventions – My name is Victoria Burney, and I am a PhD Student in the School of Psychology at The University of Auckland. Together with my supervisors, Dr Angela Arnold-Saritepe and Dr Clare McCann, I am studying the experiences of parents whose children have had behavioural interventions (behaviour analysis, behaviour support) in Aotearoa/New Zealand. Behaviour support can be provided to children with a variety of needs, across service providers and funding streams. Common to all is the value of involving parents in interventions. Taking part in this study is a chance to share your story and help to inform how future clinicians engage parents in their work. In this study, I will interview parents to find out more about their experiences being part of behavioural interventions for their children. Individual interviews (myself and parent) will last approximately 60 minutes and will be conducted places convenient for parents (including online, if that works best for families). I am interested in talking to any parents who are currently involved in behavioural interventions, or have recently (in the past 3 years) had interventions for their children, and who feel they have an important story to share about engagement.

Please find attached a Participant Information Sheet, which explains the study in more detail. Please email me if you think you may be interested in taking part, and we can arrange to meet and discuss further

Nationwide support for autistic children & their caregivers (updated Feb 2023) – The Waiora Tamariki programme at the University of Canterbury is currently recruiting for a study that is investigating the effectiveness of two online support programmes called Play to Learn and ACTion in Caregiving. These programmes were developed for this project by a team of psychologists. Play to Learn is based on Naturalistic Developmental Behavioral Interventions (NDBIs) and aims to enhance the social communication of young autistic children through play and routine-based learning. Action in Caregiving is based on Acceptance and Commitment Therapy (ACT) and aims to enhance caregiver wellbeing by providing caregivers with tools to effectively respond to challenging thoughts and feelings so they can take action to be the person they want to be. These programmes will be delivered through online modules and group coaching sessions via Zoom. Children and their caregivers will be eligible for this study if the child is 2-5 years of age and has a diagnosis or features of autism, and the family is living anywhere in Aotearoa New Zealand. We have attached a flyer which provides a brief overview of the study and you can also find our more information about the programmes in the below video https://youtu.be/cXrfw0GHlEI and on our website https://waioratamariki.org.nz/.
Caregivers can self-refer by emailing the lead researcher, Associate Professor Laurie McLay (laurie.mclay@canterbury.ac.nz; 03 369 3522) or using the contact form on our website (https://waioratamariki.org.nz/act/contact/#referral). We also welcome referrals from professionals through these avenues as well. Please feel free to contact Laurie or myself (jenna.vandeurs@canterbury.ac.nz; 03 369 0754) if you would like any further information.

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

Research Project: Whānau of Children with Feeding Challenges in Aotearoa (updated 5 October 2021)
We are seeking to gather the thoughts and experiences of parents and whānau of children with feeding difficulties, in relation to the psychological and financial impacts that may be occurring for people in this situation. We know from overseas research that there are numerous financial and psychological impacts that occur for families due to having a child with both short term and long-term feeding difficulties. There is no data currently available to show the impacts facing parents and whanau of children with these difficulties who reside in New Zealand. If you are interested in participating in the survey, please email me for more information: scor971@aucklanduni.ac.nz.
Or you can click this link for more information and to see the survey. Approved by the University of Auckland Human Participants Ethics Committee on 20/08/2021 for three years. Reference Number 2218.

Home Bladder Neuromodulation in Chronic Spinal Cord Injury Trial (added 4 October 2021)
You are invited to participate in this study by the University of Auckland if you are: 18-75 years old,  have a spinal cord injury (above T9 level) for more than 1 year, live in the North Island, have bladder problems and use clean intermittent catheterisation. Click here for details

Feedback and reports:

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

Carer Support update 28 August 2021 Carer Support and Individualised Funding Extended Flexibility: It is good news that the Ministry of Health has extended flexibility for Individualised Funding and Carer Support indefinitely. For now, this flexibility is for disability only, not those who receive the Subsidy via their DHB. We are hoping DHBs will finally follow suit. Carer Support reimburses some of the costs of using a support person to care for and support a disabled person; this means their carer can take some time out for themselves. You can continue to use your Carer Support more flexibly so that: relief care can be used when you are doing your other paid work (even if you are working from home) You can use your Carer Support funding to buy things that will provide you with a break. Examples are art and craft supplies, books, or DVDs. If you have not received relief care but have purchased something to give you a break, you do not need a signature from a relief carer on your Carer Support forms. Payments will continue to be made in half days or days as usual. The Ministry of Health will accept Carer Support forms by email to csclaims@health.govt.nz. You can use the funding if it is reasonable and cost-effective and not funded through other funding options such as a Disability Allowance. Find out about what is reasonable for you to buy and you can find out more information here:

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.