Weekly update: 22 March 2024

Kia ora Tatou,

Hello to all of us,

This week I want to urgently highlight our need for Deafblind Services provided by Blind Low Vision NZ. Currently they have a review of the need for services. The tricky bit is that, if we are not asking for services then it won’t show up as a need and we won’t get them. This is true for all over Aotearoa New Zealand, and especially for Te Wai Pounamu, the South Island, as we don’t currently have a Deafblind Coordinator based here. I am wondering if you know that and are not asking for services? Our needs will only be supported if we ask. It is critical that we feed into the process for service delivery to support us. Here are some things Blind Low Vision NZ Deafblind Coordinators might be able to help you with and you definitely need to ask for, and soon:

  • Referral for Hearing Assistive Technology such as special smoke alarms;
  • Liaising with audiologists;
  • Trouble shooting Hearing aid management and options;
  • Deafblind Awareness training of residential staff;
  • Advice for hearing aid pathways;
  • Receptive Communication support and training for individuals and their circle of Support people;
  • Some advocacy advice and/or referrals;
  • Tactile language development and training;
  • Transition for Taitamariki/teenagers from Blind Low Vision Education NZ to Blind Low Vision NZ services for people with dual sensory loss/impairment.

Currently I only know of two Deafblind Coordinators, both based in Te Ika a Maui – North Island, although able to provide support to those of us in Te Wai Pounamu – the South Island. If we don’t ask we won’t get! Here are the email and phone contact details you need to make your request.

generalenquiries@blindlowvision.org.nz

0800 24 33 33

I will be putting in my request today for Referral for Hearing Assistive Technology in terms of a special smoke alarm and Tactile language development and training. These things are overdue for me and I have a pathway to request. Please take that up for yourselves and strengthen our voice. Rights are balanced by responsibilities and in supporting yourself you support our entire community. We simply can’t put blame on lack of services if we are not asking for them and nobody knows we need them!

You may have heard in the media this week that there is a “pause” on some services for Individualised Funding. Please make sure you are up to speed on what this might mean for you. Don’t be concerned until you have checked it out.

Following are links to the Whaikaha website for more information.

Changes to Purchasing Rules – Update (Whaikaha Ministry of Disabled People)

Questions and answers: Changes to Purchasing Rules and EMS (Whaikaha Ministry fo Disabled People)

We also have an extra DPA information Exchange and a link to their survey further on in the newsletter.

Please note: There will be no email update next week due to it being Good Friday.

World Federation of the Deafblind Announcement: WFDB’s new Youth Committee

We are thrilled to announce the launch of a call for young individuals with deafblindness (aged 18-35) to join WFDB’s newly established Youth Committee. This committee aims to provide a dynamic platform for young volunteers with deafblindness to actively contribute to our organization’s mission and initiatives, while also providing opportunities for networking, CV enhancement, and increased visibility as advocates.

For more information about the Youth Committee and application guidelines, please visit our website:

Join WFDB’s Youth Committee: Call for Deafblind Representatives (World Federation of the Deafblind)

The deadline for applications is June 2nd, 2024.

Career Opportunity – Deafblind International Co-Network Coordinator Expression of Interest

Are you the new Co-Network Coordinator DbI needs?

Networks have a central role within DbI: it’s all about connecting people and sharing knowledge. As the number of DbI’s Networks have grown, we have identified a need to add a Co-Network Coordinator role to the team.

The Co-Network Coordinator will have a supporting and complimentary role to the current DbI Network Coordinator. The Co-Network Coordinator underlines the importance of the value of the DbI Networks and will be knowledgeable of the DbI Guidelines concerning Networks.

The Co-Network Coordinator responsibilities include:

  • working closely with the Network Coordinator
  • complementing the work of the Network Coordinator: for example taking part in subcommittees of the ComCom (Communication Committee) or playing an active role in the field of social media concerning the networks
  • replacing the Network Coordinator in case of emergencies
  • getting to know the Network Leaders and following the activities of the Networks.

Because the position of a Co-Network Coordinator is new within DbI, you will start with monthly consultations with the Network Coordinator to gain insight into the role and responsibilities and to coordinate which qualities can be used for the various tasks in order to achieve a good division of work.

In this role you can expect to spend approximately 3 hours per month on Network-related volunteer work.

If you are interested in this exciting new role, please submit your completed Expression of Interest form via email to the DbI Secretariat address below no later than May 31, 2024.

dbi-secretariat@sensity.ca

The Expression of Interest Form can be downloaded as a word document via the following link.

Expression of Interest Form (DOCX 242 KB)

At Deafblind International, we are committed to our Diversity, Equity and Inclusion Policy, which was approved by the DbI Board on December 4, 2023 and can be found on the DbI website:

DbI Adopts a Policy on Diversity, Equity and Inclusion (Deafblind International)

be My Eyes Update 19 March

be My Eyes recently announced a new service available in beta today in the be My Eyes app: Service Directory. This is described as having access to hundreds of hard-to-find customer service numbers and connections to companies and organizations worldwide in the be My Eyes’ Service Directory, where you can connect directly with them for free.

More information is available through the following link to their blog:

Be My Eyes Launches “Service Directory”: Direct Customer Service Connections to over 600 New Companies and Organizations (be my eyes)

Link to general information about be My Eyes:

About Be My Eyes (be my eyes)

Articles: Focal Point interview sharing the latest news on glaucoma research and other items

Thomas Bryan recently shared information about programmes from Vision Australia Radio Adelaide on Blind Citizens lists.

Following is a link to their website and podcasts.

Vision Australia Radio

Dr Luis Alarcon-Martinez from the Centre for Eye Research Australia (CERA) was a guest on the Focal Point show. On 18 March, World Glaucoma Day 2024, Dr Alarcon-Martinez also participated in a Community Forum on Gains in glaucoma research. There is a recording available on YouTube via the following link:

Video: Catch up on the Gains in Glaucoma Research Community Forum (Centre for Eye Research Australia)

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Events

Peer to Peer Support

  • New Plymouth, Monday 8 April. Please email Christine for details – link to email Christine
  • Palmerston North, launching Wednesday 10 April. Please email me for details
  • Kāpiti, Friday 12 April. Please email me for details
  • Nelson, Saturday 13 April. Please email me for details;
  • Wellington/Lower Hutt, Saturday 13 April. Please email me for details.

Deafblind International Acquired Deafblindness Network Webinar Series ‘Beyond Existence: Exploring and Living Life’

Webinar Two: Brave New World: Accessibility to and the Use of Artificial Intelligence by Acquired Deafblind People

Date/Time: Wednesday 27th March 4.30pm (Central European Time), which is 4:30am on Thursday 28th March here.

The speakers will present for approximately 30-45 minutes. This will then be followed by a questions and answer session. In total, we aim to finish after an hour. As such, the webinar should be complete by 5.30pm (CET).

The webinar will not be recorded but the two of the speakers, Carolina Cohoon and Jeremy Marks, have very kindly agreed to do separate recordings of their presentations, and these recordings will be made available on the Acquired Deafblindness Network (ADBN) YouTube Channel.

Website link for more information on ADBN, or to become a member below.

Acquired Deafblindness Network (ADBN)

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Other newsletters

DPA sent an additional Information Exchange on 20 March. The text is copied below:

DPA’s response to the sudden changes to disability support purchasing rules

We would like to acknowledge the impact of the sudden changes to the purchasing rules for disability support and to Equipment Modification Services (EMS) announced this week by Whaikaha – Ministry of Disabled People.

Since the announcement, we have been hearing from many disabled people concerned about the effect these changes will have on them and their families and whānau.

The way that these changes were communicated to our community with no consultation or warning was appalling and has caused alarm and distress to many, fearful of what these changes may mean and scrambling for information.

The announcement set out boundaries on what support funding can be used for and the way this is worded means it will impact on the ability of many disabled people and support providers to apply flexibility in seeking solutions to individual situations.

At DPA, we are concerned that a prescriptive, rule-based approach will not work – it takes away choice and control and flexibility of funding – which is a direct contradiction of the principles of Enabling Good Lives.

We will be looking for clarity and dialogue about what the changes mean with Whaikaha as soon as possible.

DPA are running a survey to find out how people are affected by the changes and are publicising a petition to reevaluate the changes. Direct links to both follow:

DPA survey about changes to disability support and EMS

Petition: Reevaluate the Recent Changes to Whaikaha Purchasing Guidelines for Individualised Funding (change.org)

DPA Information Exchange: 15 March 2024

Ministry of Social Development – Family Violence and Sexual Violence Update: 19 March 2024

The D*List

The D*List website is an online culture magazine that creates space for disabled people to tell their own stories through features, columns and news reporting.

This week’s issue covers the topic “Technology offers us liberation – and internalised ablelism”

The D*List Delivered (Substack)

Following is a link to have a browse of The D*List website or sign up to receive their weekly newsletter.

The D*List

Be Seen be Heard be Connected Weekly Update

Please note, access to our weekly be Seen Be Heard Be Connected emails is also available on our website via our events page, at the following link.

News and events (Deafblind Association New Zealand)

Ngā mihi mahana,
Warm regards,
Amanda

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Event reminders

Wednesday 3 April Royal New Zealand Foundation of the Blind online Board Meeting

Details were provided in 15 March update. Contact Diana Chandler for more information.

boardsecretary@blindlowvision.org.nz

15 March update

Or call the Contact Centre on 0800 24 33 33.

Wednesday 17 April, Deafblind International Communication Network Webinar 5

Webinar 5 – A parent perspective on supporting and advocating for her deafblind son. Details were provided in 15 March update.

25 to 31 May, Tāmaki Makaurau Auckland – International Council on English Braille 8th General Assembly

June 2024 Deafblind Awareness month – Yarn bombing

#DbIYarnBombing2024 – information was provided in 21 January update.

21 January update

2024 Activity Deafblind International Youth Network (DbIYN)

Monday 30 September to Friday 4 October in Disneyland Paris

Expression of Interest: Please contact simon.allison@sense.org.uk

Thursday 3 October Deafblind UK Online Conference 2024 Theme: “Standing out and fitting in”. The conference is free and all are welcome.

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Ongoing

2024 Audio Described Nationwide Events Booklet

The events list with booklet page numbers was provided in the 23 February update.

23 February update

The full calendar is available as a word document via the following link.

2024 Events Information (DOCX 60 KB)

No Labels on Wellington Access Radio

You can listen to this edition of the show on Wellington Access Radio on Tuesday just after 1:00pm, or the following Tuesday at the same time.

If you miss the scheduled show, you can check it out later online at the link below.

No Labels (Wellington Access Radio)

Or you can subscribe to the show via your preferred podcast player to check out this episode or previous episodes of the show.

Entertainment with Able

Able is a not-for-profit organisation working towards a more inclusive Aotearoa, believing everyone should be able to access news, entertainment and culture. Funded by NZ On Air, they’re Aotearoa’s leading provider of media access services, including captioning services, subtitling and audio description.

Listings are available at the following browser links.

A link to Able’s website to subscribe to the weekly newsletter with listings and picks of the week follows.

able.co.nz

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Deafblind Association New Zealand access to TellMe

See TellMe numbers for your area

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End of report and this week’s update.

Amanda Stevens
Executive Officer
Taringa Turi Kāpō Rōpū
Deafblind Association New Zealand

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