Welcome from the CEO

Welcome to the December edition of Talking Point! 

And just like that, it’s December already and the year is almost over!

In the last few weeks, the MDNSW team have been busy with many celebrations to wrap up the year.

You would’ve seen on our socials that we recently celebrated our Annual Community Day! It was such a beautiful day spent with our members and families. We also held our AGM on the same day, recapping the highlights of the year and honouring the late Richard Arnheim as a Life Member with his wife and son in attendance.

If there’s one thing I am often reminded of at this time of year, it is gratitude.

Reflecting on the year that was, there are so many things we’ve achieved together in 2023 as a community, and I am immensely proud and grateful for the teams, volunteers and community members and their families that each play their part in making a difference in the lives of people living with neuromuscular conditions.

I want to personally thank you, our valued community, for entrusting us to support and advocate for you. Looking forward, we will continue to invest and seek new ways to provide you with the right supports and services for a bigger and better 2024.

I wish you and your family a very Merry Christmas and a Happy New Year. May you have an enjoyable summer break and may 2024 be your best year yet.

Warmest wishes,

Charlotte Sangster, (she/her)
CEO, MDNSW

Office Closure

Our office will be closed from Saturday 23 December – Monday 8 January 2024. For all enquiries, please drop us a note at info@mdnsw.org.au and our team will get back to you upon return.

If you need immediate assistance, here is a list of helpful hotlines:

• Beyond Blue 1300 22 4636
• Lifeline 13 11 14
• Disability Gateway 1800 643 787
• Carer Gateway 1800 422 737
• Emergency 000

Annual Report
 

Our 2022-2023 Impact Report is now available. Check out all the highlights of what we've achieved together as a community in the last financial year. Happy reading!

Click the image to access the report. 

Landmark NDIS Review report released

On 7 December, the final report of the Independent NDIS Review was released, mapping out the Review’s recommendations to deliver a better NDIS experience for participants.

The report includes approximately 26 recommendations and 139 supporting actions around such topics as fairer housing and living support, foundational supports including mental health, and service navigation.

MDNSW is spending the time to explore the review. Voices in the community are concerned about the recommendation to use only registered providers.

While the government has not confirmed it’s support of the review, National Cabinet agreed to implement legislative changes to the NDIS with the full response to the review being released in 2024.

We will be following the progress of this closely in the coming months and will continue to advocate for better outcomes and supports for our neuromuscular community.

For more information on the review and to access the full report, visit https://www.ndisreview.gov.au/.

Last LGMD Connect for 2023

Last month we held a great LGMD Connect session.

It was a lively and interactive session with the participants sharing Show & Tell and supporting each other with various issues such as mobility devices, modified vehicle options and NDIS.

One participant shared about his meeting with state parliament for awareness about LGMD.

It was great to hear that a participant was funded for a car hoist after a recommendation from a peer in this group at the last meeting.

If you live with LGMD, why not join the group in 2024! LGMD meets 3 times a year online, and is a safe, supportive space to learn, grow and laugh with others who live with similar challenges. Contact Carolyn at carolyn.cm@mdnsw.org.au for more information.

Info Share – Getting the Best from Your Support Workers

If you would like a copy of the notes from this session, please contact Carolyn at carolyn.cm@mdnsw.org.au.

Nine people with disability and family members joined together via Zoom to chat about getting the best from your support workers.

This is a popular topic! Loads of valuable tips were shared between very experienced people and people newer to the process of recruiting and managing support workers. Topics ranged from where to find people, to red flags, and whether to use CCTV cameras in the home!

It was lovely to welcome a new couple who are parents of a young teen who lives with DMD who were able to chat with two young men with DMD who live independently in their own apartments – a lot of valuable insights and inspiration shared.

Community Day 2 December

What a day! On Saturday 2nd of December, we celebrated our annual Community Day and Christmas celebrations. From boccia and face-painting to crafts, trivia and a very important visit from Santa (who came with presents!), we had so much fun celebrating the end of the year with our community

Carolyn and Jenny thanking Joan for all her hard work over the years.

“(Community Day) was such a great experience for both me and the family, and the first time we ever went to that kind of event. We were pleasantly surprised and very impressed… We really had such a lovely time,” said MDNSW member, Diana.

Thank you to everyone who celebrated with us. We can’t wait to do it all again next year! Click here to view all the photos from the day.

Face painting was a major hit among the kids!

Peer Connect 2024

Thank you to everyone who has participated in our Peer Connect meetings this year including the NIRD, Community Day, Makers Day, International Women’s Day High Tea, Condition specific groups, Info Share, social lunches, Power Hour, Mums Wine n Chat and Retreats! Your willingness to share your experience and support others has strengthened our community. Peer Connect will be back in full swing in February but we need YOU to make it the program you want it to be!

We will be using January to review and evaluate our Peer Connect program, and plan events and programs for 2024.

We would love to hear your thoughts on what you’d like to see on the calendar in the new year so please share your ideas with our Senior Community Support Specialist Carolyn on carolyn.cm@mdnsw.org.au.

We’d also like your input on:

- Topics
- Social events
- Guest speakers
- Format of the meetings eg Zoom, Face to Face, locations etc
- Times and days of the meetings
- What you like and don’t like about Peer Connect

Sydney Mum's Retreat 2024

It’s not too late to join us at our Sydney Mum’s Retreat! Designed exclusively for mums who have a child with a neuromuscular condition, this 2-night retreat is a chance for mums to have some time off, relax, recharge and connect with other mums.

Enjoy a getaway of respite in the picturesque Blue Mountains with self-contained cottages, a barbeque area, tennis court, games room, fire pit and more.

Cost: $100 for 2 nights shared accommodation & some meals

Where: Federation Gardens & Possum Hideaway, Blackheath

When: 15 – 17 March 2024

Places are strictly limited! To register your interest please email jenny.smith@mdnsw.org.au or on 0431 690 629 by Friday, 16 February 2024

Christmas Appeal

This December, you can make someone’s Christmas special with MDNSW! Donate to our Christmas appeal today, and help us improve our summer camp experience for our awesome attendees. The success of our Camp program relies on carer facilitation and access to adequate equipment to facilitate the camp experiences.

Ensuring that each child has the necessary equipment is paramount in guaranteeing their full participation and enjoyment. By providing the appropriate tools, we enable every camper to not only engage in activities but to thrive. 
 

You can donate via the link below 😊. Together, we can help our campers have a very special Christmas. 

https://mdnsw.org.au/make-a-christmas-donation/  

AGM Update

We recently held our 63rd Annual General Meeting on 2nd December to discuss some highlights of the last financial year and to thank our community for their support.

The 2022-2023 financial year has been a welcome and much needed change of pace for our organisation, with activities and events resuming in full. Our team has committed to advancing our strategic goals and continuing to deliver outstanding service to our neuromuscular community.

To conclude the AGM, our CEO Charlotte Sangster commemorated the late Richard Arnheim with a life membership as a thank you for his support over the years, with his wife and son in attendance to accept the award.

The silly season is upon us!

On Tuesday the 5th of December, the MDNSW team celebrated their Annual Christmas Party with a festive lunch at Club Parramatta. Looking back on the year that was, there was so much that we’ve achieved as a community and we look forward to another year of camps, retreats, events and more!

Check out some of the happy snaps below
 

Work Experience with Ryan

Last week we had Ryan join the team for his year 10 Work experience placement! Ryan attended peer connect meetings, shared his insights in a Consumer project and crafted a new story for The Peer Collective! It was an excellent opportunity for Ryan to share his lived experience and develop his time management, writing and reflection skills. At the same time MDNSW relished the opportunity to get valuable feedback and insight from a young member of our NMC community. Well done Ryan, and thanks for choosing MDNSW for your work experience!

Access the Sydney Festival 5-28 January Accessible Performance Guide

Start your summer plans now! The Sydney Festival is a city-wide celebration of culture and creativity, showcasing our nation’s diverse story-tellers and artists to the world. The festival is committed to ensuring an accessible, inclusive and enjoyable space for everyone. Download the Accessible Performance guide here to plan your trip! If you prefer a manual copy of the guide, please contact Carolyn at carolyn.cm@mdnsw.org.au and we can send this direct to you.

For all the details on the Festival’s access program, precincts, venues, built environments and information on shows click here

Dream Night at Taronga Zoo

On Thursday the 7th of December, our team and community were invited to Dream Night, a one-night VIP experience at Taronga Zoo.

Here are some snapshots of the night from one of our member families, the Baltissen family.

The family had come straight after a hospital appointment for their son Logan.

“The night really distracted Logan from the pain he was having in his legs after surgery. It was a great night for all of us!”

Thank you once again Taronga Zoo for giving our community a night to remember!

My NDIS Participant Portal

In case you missed it, the NDIA have introduced a new participant portal designed to be more accessible and user-friendly.

The My NDIS Participant Portal helps you to view your budget, see your plan information and personal details, make and manage claims and see messages and correspondence from the NDIA. For more information or to learn more about the new portal, watch this 2-minute video here.