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

Disability Connect’s Disability Support Services Bill Submission 2026

Click the link to read our submission.

Surveys

Exploring South Asian Migrant Caregiver Experiences with Autism Services – Participant Call:

The qualitative project aims to understand how South Asian Migrant Caregivers access support services, specifically for Autism. The project aims to understand the available support systems- barriers and strengths in the Aotearoa context.  The project involves a one-on-one interview with the student researcher guided by questions that explore migratory experience, child’s autism spectrum diagnosis, and caregiver experiences with Autism services. The project aims to highlight the importance of South Asian community perspectives within Autism services to better understand how they can be supported.

Eligibile for participation if you have:

  • One or more child(ren) or young people (aged between 5 and 18) with autism spectrum disorder (ASD) diagnosis
  • primary caregiver
  • accessed autism support services
  • identify as a South Asian migrant from an Asian country
  • fluent in English

As an appreciation for you time and knowledge, a $20 Woolworths voucher will be given after the interview.

The participant call is open till August 1st

Contact Padma Krisshnamurthi : pkri961@aucklanduni.ac.nz

Improving Accessibility at Auckland Council Events:

An Event Organiser for Auckland Council is seeking feedback on how to improve accessibility at events held across Auckland. Please share your comments and insights on any barriers or challenges you have experienced when attending events, as well as your suggestions for making events more accessible and inclusive for everyone. Please email your feedback to admin@disabilityconnect.org.nz.

Smoking is complicated – your story matters:

Whether smoking is a tool for relief, a personal statement, or a private habit, your lived experience as a disabled person who smokes is currently missing from the public conversation. All is for All would like to understand more about your journey. They are currently looking for disabled people who smoke cigarettes (or have quit in the last 12 months) to join them for a confidential, anonymous online interview or as part of a focus group.

  • No judgment, just an open space to share your reality.
  • Your time and insight is valued. A koha is offered for your participation.
  • You don’t have to smoke regularly, but this is about cigarettes, not vapes.
  • Ready to help bridge the gap? To learn more or to sign up, please contact Grace at 02108415035 or grace@allisforall.com to get involved.

Speechless: Young Children’s Experiences of Exclusion from Early Childhood Education in Aotearoa New Zealand: 

Research participation opportunity for parents of children aged 0–5 who have been excluded from preschool in Aotearoa to share their experiences. Ethics approval granted by Massey University. Participation involves one confidential interview of approximately 45 minutes with the parent or caregiver. Interviews will take place between 12th–26th June, either online or in person depending on your location and preference.  Parent information here.  To find out more or to register, please email: Researcher: Kate Morley: Kate.Morley.1@uni.massey.ac.nz / Research Supervisor: Karen Harris k.harris3@massey.ac.nz

Improving Accessible Supermarket Experiences

Jessica Clarke, Founder of CX Technologies, is developing a project focused on improving in-store assistance, with a particular emphasis on accessibility challenges and how support systems can be enhanced to create more inclusive, independent, and user-friendly supermarket environments.

Community members are invited to take part in a short, anonymous survey to share their experiences, challenges, and needs. The survey takes only a few minutes to complete and will directly inform the development of a more accessible and supportive shopping experience.

Survey link:

Contact: Jessica.clarke@cxtechnologies.co.nz

Fighting for Change: Activists’ Experiences Advocating for Gender Equality in Work in Aotearoa New Zealand.

You are invited to participate in a research study on activists’ experiences advocating for gender equality in work in Aotearoa New Zealand. This study is being conducted by doctoral student Emma-Louise Hitchcock from Auckland University of Technology, New Zealand. The study is being carried out as a requirement for a Doctor of Philosophy (PhD).

What is the purpose of this research?

For the purposes of this research, ‘activist’ is understood broadly and includes people who have advocated for gender equality through community, organisational, professional, policy, union, or institutional roles, whether inside or outside formal employment. This includes allies.

This research aims to explore the everyday experiences of activists advocating for gender equality in Aotearoa New Zealand. It will highlight all the things activists do and explore how their identities and experiences shape their activism, while also seeking to understand the successes and challenges they encounter in this work.

I would really value the experiences of disabled activists in this study, as your perspective is essential for understanding how gender equality intersects with accessibility, workplace inclusion, and activism.

Nurothreads Sensory Clothing Survey:

Nurothreads is a new community-led project in development, focused on creating sensory-friendly, adaptive, and safety-integrated clothing for autistic and sensory-sensitive people.

Nurothreads was born from lived experience and the everyday challenges many families face — from sensory distress caused by clothing to safety concerns such as wandering or elopement. Their goal is to design clothing that supports comfort, emotional regulation, and safety through thoughtful features such as soft, tag‑free fabrics and a discreet reinforced pocket for families who use tracking devices.

Currently in its early stages, Nurothreads is seeking input from parents, carers, and professionals to ensure the clothing reflects real needs and experiences.

Community members are invited to share their insights by completing a short survey: Nurothreads Sensory Clothing Survey

Housing survery:

Whangarei Accessible Housing Trust : Help us to help you.

The Whangarei Accessible Housing Trust has been housing people aged under 65 with physical disabilities in affordable, accessible homes in Whangarei and Auckland for 20 years.

The Government is currently rolling out funding to build new social housing, and the Trust is preparing an application. As part of this process, it is seeking community support to gather up-to-date and relevant data to strengthen its application. This information will help improve the chances of securing funding for accessible housing across the region, from the Far North to Auckland.

The Trust is looking to better understand:

  • Which areas have the greatest need for new housing
  • The sizes of homes required
  • The level of disability among those in need, which can significantly limit other housing options

Community members can support this initiative by completing a short survey:  https://www.surveymonkey.com/r/Z3CT285

Family survey on experiences accessing Speech Language Therapy in NZ and around the world

Kia Ora! My name is Kirsten Wachter and I am a Speech Language Therapist. I am undertaking a research project as part of my Masters of Speech and Language Therapy in Massey University’s Institute of Education. I am exploring experiences of highly mobile families who are accessing, have tried to access or have accessed Speech Language Therapy services in NZ and around the world. We want to hear about the challenges you faced and what helped along the way. We hope to build a better understanding of how we as therapists and organisations can support highly mobile families. If you’re interested to share your experience, scan or click the link through the flyer to the short anonymous survey. Link to survey.

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

 

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

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.

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.