Epilepsy Waikato Charitable Trust

11/06/2026

📣 Submissions on the Disability Support Services Bill close at 1pm TODAY.

You may have already seen articles and posts about this Bill over the past week — it’s a big one, and it will shape the future of disability support in Aotearoa. It affects every disabled person, every whānau, and every carer.

Even a short submission makes a real difference. You don’t need to be an expert — just share what support means for you or your whānau.

🟣 How to submit (3–5 minutes)
Submit online here:
👉 https://www.parliament.nz/en/pb/sc/make-a-submission/document/54SCSSC_SCF_BILL_178637/disability-support-services-bill

You can upload a document or just type a few sentences into the text box.

🟣 What you might want to say
You can write about:
- what support means for your safety, independence, or daily life
- how epilepsy affects your routines, work, study, or whānau
- why delays, reassessments, or reduced flexibility are unsafe
- why family care should be a choice, not an expectation

Even one paragraph is enough.

Helpful links that our Epilepsy Advisor analysed to make sense of the legalese in the Bill:
- Disabled Persons Assembly (includes links to resources, as well as their Plain Language Points) https://www.dpa.org.nz/news-and-information/latest-news/disability-support-services-bill/
- Disability Advocate and Lawyer, Dr Huhana Hickey, provides a Simple Submission Template here - https://huhana62.substack.com/p/why-disabled-people-need-to-make?utm_source=post-email-title&publication_id=3789228&post_id=199031891&utm_campaign=email-post-title&isFreemail=true&r=2k6hc1&triedRedirect=true&utm_medium=email, and a Plain Language Breakdown here - https://huhana62.substack.com/p/here-is-a-plain-language-breakdown
- CCS Disability Action have also put together a Submission guide - https://www.ccsdisabilityaction.org.nz/news/dss-bill-submission-guide
- New Zealand Disability Support Network have also provided a breakdown of the Bill, and provided several different submission templates to support people to submit - https://nzdsn.org.nz/make-your-voice-heard-in-the-dss-bill-select-committee/
- This website (https://yeahnahbills.org/) may also help anyone make a submission more easily (thank you Waikato Connect-Ability!)

Ngā mihi nui,
Epilepsy Waikato Charitable Trust (EWCT) 💜

09/06/2026

Our Epilepsy Advisor has organised with a number of libraries in Hamilton to have an Epilepsy display this month (June). Hillcrest Library at Hamilton Gardens was up last week, with Central Library in the city having a display this week, Chartwell Library next week, and Rototuna Library in the final week of June. These displays are simple, child-friendly, and help visitors understand what epilepsy is, as well as clearing up common myths about epilepsy, and featuring a special Hamilton Libraries collection of books where epilepsy appears in the stories.

In addition, an Author Talk has also been prepared at Rototuna Library for Tuesday 23rd June. At this event, Sharon Holt, the author of two books about epilepsy will share short interview moments with Esther, and read both stories aloud. This will be followed by a relaxed audience Q&A. All ages are welcome, and this event is free to attend. Please see the attached poster for more information.

09/06/2026

Blind Low Vision NZ has organised a day of action for today (Wednesday 10 June) surrounding the Total Mobility scheme. The Government needs to know how important this scheme is to the disabled community.

Even though the consultation period has finished, no decisions have been announced yet and so we’re taking co-ordinated action to show the Government how big of a deal this is to the community.

By calling and/or emailing into the Minister for Disability Issues Hon Louise Upston’s electorate office en masse, on the same day, we can show how widely and deeply felt these changes would be. We're taking action to stop the proposed changes to Total Mobility, and the subsidy reduction, and urge Hon Louise Upston to advocate for the people she's meant to represent.

Please contact Hon Louise Upston between 9am and 11am today. Her email address and phone number are in the post shared below. You can call and/or email from anywhere. Anyone who is affected by, or has people they care about who will be affected by, the changes to the Total Mobility scheme can participate!

You can find more information on the proposed changes and the Day of Action (including call and email scripts) at this link: https://blindlowvision.org.nz/news/total-mobility-scheme-day-of-action/

Please let the Minister know how you feel about the subsidy reduction and proposed changes, and how these changes will affect your life!

Today’s the day! We need everyone calling and emailing Minister Louise Upston this morning.

Phone: 07 3765563
Email: [email protected]

The proposed changes to the Total Mobility scheme would result in unnecessary additional costs to the disabled community, including people who are blind, deafblind and have low vision. In our current cost of living crisis, this is simply not good enough.

We'll post an example call script in the comments to help you craft your message. Put it in your own words - your own story is the most powerful!

You can find more information on the proposed changes and the Day of Action at the link [in our bio!/in the comments.]

Let’s show the Government our strength in numbers.

Image description: The text "Today's the day. Take action for Total Mobility. Call and email Louise Upston before 11 am today." against a bright yellow background.

08/06/2026

Registrations for the next Changemakers Programme | Kaupapa Kaihanga Panoni are now open!

Changemakers | Kaihanga Panoni is a free online programme for disabled people and our allies who want to lead change in ways that matter to us and our communities. Guided by lived experience – created for disabled people, by disabled people – the programme supports you to grow your confidence, strengthen your voice, and lead change in your own way.

You can find the updated programme and registration details here:
https://www.yourwaykiaroha.nz/supports/supports-programmes/changemakers/

The next cohort begins on 8 July 2026 and runs through to 12 November 2026. The programme now runs over 20 weeks (rather than 10), allowing more time for whakawhanaungatanga | relationship building, reflection, and learning alongside Changemakers’ other life commitments.

The Changemakers Programme focuses on building confidence, skills, and networks for inclusive, community-led change. Each week includes an online session or resource and a short reflection activity you can complete in your own time. 

01/06/2026

My Life My Voice are hosting, and Spectrum Foundation are funding, an event - Ōkawa - Your Journey, Your Voice, for wahine and tāne to explore the rich traditions of Karanga and Whaikorero.

Any d/Deaf, Disabled, Tangata Whaikaha Māori or person with an impairment can register for 1 of 3 FREE weekend workshops below:
- Karanga for Wahine
- Whaikorero for Tāne
- Fundamental workshops for all genders on the meaning and importance of these practices.

Come along to learn, connect, and grow in a welcoming and supportive environment.

When: Friday 14th August to Sunday 16th August 2026
Where: Raungaiti Marae, 6425 State Highway 27, Waharoa, Waikato
Cost: FREE
(NOTE: Travel costs to and from the Noho are at your own expense)

How to Register
Registrations are still open — spaces limited!
To register, please fill out the form at https://www.mylifemyvoice.org.nz/events. If you are part of a group of people that would like to attend, please contact us before registering.

Here are some reflections from those who attended last year.

Ōkawa Participant Reflection 1:
https://www.facebook.com/share/v/18GzksurLd/

Ōkawa Participant Reflection 2:
https://www.facebook.com/share/v/1CgbbxHsHh/

Ōkawa Participant Reflection 3:
https://www.facebook.com/share/v/1AruHdm5CR/

Natt's Reflection on Ōkawa:
https://www.facebook.com/share/p/14bKiHEfU7a/

29/05/2026

The Disability Journey Into Adulthood - Free Online Sessions

Planning for life after school? The Disability Journey into Adulthood series is here to help! These free, 2-hour online informative sessions offer practical advice on transitioning from school, living options, transport, funding, and more.

Upcoming sessions in June:
- Tuesday, 9 June: 10am - 12pm
- Thursday, 18 June: 6.30pm - 8:30pm

💻 Free to attend via Zoom

Register for a session here (https://www.eventbrite.co.nz/o/disability-journey-into-adulthood-new-zealand-109700317271?utm_source=newsletter&utm_medium=email&utm_campaign=disability_connect_newsletter_18_may_food_support_neurodiversity_support_skateboarding_my_best_life_workshop&utm_term=2026-05-29).

More details can be found at this link (https://www.facebook.com/groups/disabilityjourneyintoadulthood?utm_source=newsletter&utm_medium=email&utm_campaign=disability_connect_newsletter_18_may_food_support_neurodiversity_support_skateboarding_my_best_life_workshop&utm_term=2026-05-28)

22/05/2026

Pharmac is seeking feedback on proposed updates to its Operating Policies and Procedures Manual. The Manual outlies how processes at Pharmac are carried out, such as decision-making, consultation, and engagement, funding, and the Pharmaceutical Schedule. Proposed updates are intended to better reflect current legislation and systems, as well as the evolving role of Pharmac and its operations. Changes to the way medicines are assessed, prioritised and funded are not proposed.

To give feedback you can send Pharmac an email at [email protected] or complete their online form by 5pm next Tuesday 26 May 2026. EWCT will be making a submission.

Please see here for more information on this proposal, and for links to the draft manual, as well as to access the online form: https://www.pharmac.govt.nz/news-and-resources/consultations-and-decisions/proposed-update-to-pharmacs-operating-policies-and-procedures-manual #:~:text=practices%20is%20covered.-,Summary%20of%20changes,-To%20give%20feedback

It is valuable for individuals with epilepsy to submit, as your submissions make the human impact of Pharmac's processes impossible to ignore. You could share short reflections on why stable access to epilepsy medicines matters, your experiences with brand changes, your experiences with medicine shortages, impacts of delays in funding new treatments, how Pharmac's decisions affect your life (e.g. work, study, parenting, mental health, relationships), and/or, what you want Pharmac to understand.

Proposed update to Pharmac’s Operating Policies and Procedures Manual 6 May 2026 Medicines Consultation Closes 26 May What we’re proposing Pharmac is consulting on an updated Operating Policies and Procedures Manual (the Manual) that explains how it carries out its statutory role and functions. ...

21/05/2026

Te Toa Takatini – Together we are stronger: building a shared declaration of disability rights for Aotearoa NZ

Epilepsy Waikato Charitable Trust's Epilepsy Advisor has recently joined a group of individuals from organisations (titled the Finding Common Ground initiative) to work together to build a shared Declaration of Disabled Peoples Rights in Aotearoa New Zealand, grounded in Te Tiriti o Waitangi, UNCRPD, and Enabling Good Lives. This initiative includes organisations such as the Disabled Persons Assembly (DPA), National Enabling Good Lives (NEGL), and Te Ao Mārama Aotearoa (TAMA), and is led by tāngata whaikaha Māori, Deaf, and disabled people. We want the declaration to shape change ahead of the 2026 General Election and beyond, by holding decision makers accountable. Read here to learn more on the Finding Common Ground initiative: https://dpa.org.nz/dpa-projects/finding-common-ground/

One of the ways that you can get involved is by completing this survey (https://www.surveymonkey.com/r/KZ6WNYP). This survey can be filled out by disabled people, tāngata whaikaha Māori, whānau, family and carers. Please feel free to share the survey widely with your networks. This first short survey will help shape what the declaration should include, and is an idea generation survey. Any draft declaration will be shared widely for feedback before finalising. The survey will ask questions about who you are, what is important to disabled people and their families, whānau, and carers, and actions that will benefit the community.

There is also supporting information for the Survey in Easy Read, which can be found here: https://dpa.org.nz/dpa-projects/finding-common-ground/finding-common-ground/

The survey will close on 18th June 2026.

17/05/2026

Manatū Hauora The Ministry of Health is asking for your feedback on the draft Mental Health and Wellbeing Strategy 2026-2036. This Strategy will set the direction for how the health system improves mental health and wellbeing outcomes for New Zealanders over the next ten years.

Today is the last day for public consultation. Manatū Hauora will be taking submissions until 5pm Monday 18th May. Feedback provided will inform the final Strategy as well as a three-year implementation plan to drive change and accountability.

See here for links of the Strategy, consultation summary, a video information session of the Strategy, and for information on how you can have your say:

The Ministry of Health is asking for your feedback on the draft Mental Health and Wellbeing Strategy (the Strategy). The Strategy will set the direction for how the health system improves mental health and wellbeing outcomes for New Zealanders over the next ten years.