Dear Reader,

As the end of the year draws to a close, we reflect back on the year. Earlier this month we held our Annual General Meeting and released our 2021/2022 annual report.

SWAN Annual General Meeting (AGM) and Annual Report

Thank you to all SWAN members who attended our Annual General Meeting (AGM), sent in proxy forms or acted as proxies for other members.

At our AGM, Liz Bishop (Chair), Emma Amalfi (Treasurer) and I presented an overview of SWAN's 2021-2022 Annual Report, including the board's activities, SWAN's financial position, our support for families and in the sector, our members, awareness and future plans. We also outlined challenges facing SWAN families and the organisation, primarily lack of funding. 

Thank you to Liz Bishop (Chair), Melanie Regan (Deputy Chair), Nicole Antonopoulos and Belinda Honess for their valued contributions during their time on the board, and thank you to Deb Bianco and Emma Amalfi, who will continue to serve on our board. We welcome and congratulate the following new board members: Janet Collins, Rod O’Donohue and Tania Prior-Smith.

Thanks also to our Patient Pathways Nurse, SWAN ambassadors, the SWAN Community Advisory Group, staff, volunteers, donors and funders. For further details of a recap of our year 2021-2022, please read our 2021-2022 Annual Report.

School Refusal
The Federal Education and Employment References Committee is conducting an inquiry into the national trend of school refusal. SWAN members are encouraged to submit their own submissions or contribute to SWAN's submission. To find out more about this inquiry, please visit the Terms of Reference page. If you would like us to include your experiences of school refusal in our submission, please email Ant by Monday, 28 November.

Capacity and Culture of the NDIA
The NDIS Joint Standing Committee in the Australian Parliament is looking at the culture and capability of the NDIA. I was fortunate enough to be able to present SWAN's views on the Capacity and Culture of the NDIA to the Joint Standing Committee for the NDIS last Friday. We have also submitted a written submission which you can read on our website. We also encourage our members to make their own submissions. To find out more about this inquiry you can visit the Terms of Reference page.

Disability Royal Commission - submissions closing 31 December 2022
The Disability Royal Commission (DRC) is a response to concerns about violence, neglect, abuse and exploitation of people with disability in a variety of settings. You can read more about the DRC here or make an individual submission to the DRC. SWAN will also be making a submission, so if you would like to contribute to it, please email Ant by Monday, 5 December, so we can include your feedback in our submission.

Genomic Data Survey and Uber Eats Voucher Draw
Thank you to all the members who completed our Genomic Data Survey. We are so thankful for your contributions. I will soon be presenting the preliminary findings to the Human Genetic Society of Australiasia (HGSA) conference with an audience of genetics health professionals, industry representatives and researchers who may be interested in developing a formal research study on the topic. Congratulations to Lucia Wang, who won the draw for a $50 Uber Eats Voucher!

As we start to head into the festive season with rising COVID numbers, please do what you can to keep your loved ones safe. 

Best wishes,

Heather Renton
Chief Executive Officer and Founder
SWAN Australia
SWAN Christmas Wish
This December, please consider donating to SWAN so we can continue to fund our Peer Support and Information service.

Helen, our Peer Support and Information Officer has 
assisted a number of families this year who have benefited from her in-depth knowledge of disability supports and services. More importantly, as a mum to a 28-year-old complex SWAN child, she is the well place to offer peer support. To continue providing this well-needed service and keep our information resources up-to-date and expanding, we are relying on donors for help.

“Helen got us through a very difficult and stressful time. My husband and I believe her experience as an advocate and as a carer of a rare child was priceless. Helen's expertise and knowledge was well above the private support coordinators we have seen in the past. She helped us put our best foot forward with the NDIS and prepared us in a short time frame.” - SWAN mum

If you are not in a position to donate but are stuck for gift ideas, please consider purchasing our SWAN merchandise via our website! Our bags and T-Shirts are great practical gifts, and you can feel good about making a difference too. 

Our SWAN large washable environment bags are a practical addition to any shopping outing. They are compact, lightweight, washable and hold plenty of shopping. Price: $15. Pictured: side 1 and 2 of SWAN bag. Our good quality SWAN T-shirts (pictured below) come in a range of sizes from 6 months to 4XL (unisex). If you are a proud supporter of SWAN, please consider purchasing a T-shirt and show you care about our SWAN community. Price: $30.

Please order sooner rather than later to allow for postage delays in the lead up to Christmas, particularly if you are outside Victoria.

Book a peer support call with Helen, our Peer Support and Information Officer
A number of SWAN members have already benefited from talking with Helen and benefited from her in depth knowledge of disability support and services. 

If you would like to book a free call with Helen at one of her available times, please do so via Calendly. You can access Calendly via our website, or directly by clicking here. You will receive a call at the scheduled time from a 'No Caller ID' number.

Please note that Helen's working hours are varied. If you need any assistance booking a call with her, please contact Ant Howard via email or phone 0466 122 290.

November events

SWAN Parents Dinner - WA
Sunday, 27 November - 7:00 PM start at Perth Thailicious Restaurant
Please click here to register.

December events

Meet the Experts - Anne Cregan
Thursday, 1 December
- 8:00 PM - 9:30 PM (AEDT)
Please click here to register.

SWAN Siblings Catch Up
Sunday, 4 December - 6:00 - 7:00 PM (AEDT)
Please click here to register.
Peer Support Gatherings in Victoria

Our peer support leaders in Victoria have organised a number of catch ups. If you live in Victoria and have not been assigned a group, this is because we did not have any per support leader volunteers to cover your area. You are very welcome to join any of the listed events. Please let the relevant contact know that you will be attending.

Strathmore Heights and Surrounds
Thursday, 24th November - 10:00 AM 
The East Pantry - 14 Centreway, Keilor East
Contact: Abigail Burton

Epping and Surrounds
Sunday, 27th November - 10:00 AM
San Churro - Plenty Valley Shopping Centre, Mill Park
Contact: Jenny Downing

Narre Warren and Surrounds
Sunday, 27th November - 7:30 PM
Shanikas Restaurant Berwick - 55 High St, Berwick
Contact: Maya Pinn or Liz Collins

Glen Iris and Surrounds
Friday, 2nd December - 12.30 PM
Lunch at Axil Coffee Roasters - 322 Burwood Rd, Hawthorn 
Contact: Sue Murray
Anne Cregan - Partner at Gilbert + Tobin (Master of Criminology, Bachelor of Laws and Arts)

We invite you to our Meet the Experts session with Anne Cregan (see the events section above or register here). This info session will provide information on wills, estate planning and disability trusts.

Anne is a partner in Gilbert + Tobin’s Pro Bono group. One of the group's specialty areas is legal issues affecting people with disabilities. Anne has extensive experience in assisting people who are disadvantaged and marginalised and the organisations working with them across a range of areas of law. Anne has a particular interest in the law as it affects people with cognitive impairment and/or mental illness and has presented and consulted widely on this.
Association for Children with a Disability Workshops

Is your child new to the NDIS? 

Then don’t miss this brand new online workshop! 

Getting Started With Your Child’s NDIS Plan is a FREE workshop run by our friends at ACD. If you have a young child with developmental delay or disability and are new to NDIS then register now

You’ll get information on understanding what’s in your child’s Plan, using your child’s Plan, finding services, and where to go for information. 

All of ACD’s professional facilitators are parents of children with disability and have personal experience in navigating the early years and NDIS. 

Workshop dates: 

  • Tuesday, 22nd November 10:00 AM 
  • Wednesday 23rd November 10:00 AM
  • Wednesday, 23rd November 7:30 PM
  • Thursday 24th November 10:00 AM

Places are limited. Register now to secure your place. 

World Festival of Magic

All tickets to the 2022 Victorian World Festival of Magic shows are complimentary for SWAN members, their family members and carers. VIC members can attend the show in person and all SWAN members can enjoy it virtually.

Please see their flyer for more details. To book tickets or to register for streaming access, please email your order and contact details to Meredith Newman. Enjoy!
Shedding new light on car seat safety for children with disabilities

Parents of children with disabilities and medical conditions can now access independent safety information about special purpose car seats for their child thanks to a world-first crash-testing program. Mobility and Accessibility for Children in Australia Ltd (MACA) has sled-crash tested 15 different special purpose car seats through its Australian Safety Assessment Program (AuSAP). 

Of the special purpose car seats that were crash tested, eight have been published on MACA’s national product register. Until now there has been no independent evaluation program in Australia – or globally – for special purpose car seats used by children with disabilities and medical conditions. 

Visit the national product register here:

For regular updates about safe transport for children with disabilities and medical conditions, like MACA’s Facebook Page and follow MACA on LinkedInYou can also subscribe to MACA’s quarterly newsletter here.

Fundraising for SWAN

Thank you to those who have been involved with fundraising for SWAN!

If you would like to fundraise on behalf of SWAN, please refer to our website for ideas and our proposal and fundraising guidelines. Please contact us if we can assist with your fundraising efforts in any way. Please note in accordance with fundraising regulations, SWAN Australia is legally required to approve and authorise all volunteer fundraising activities.

Our Condolences
With deep sympathy we share the sad news that Zaidi Sang, another beautiful SWAN angel, passed away on October 10, 2022.

We are thinking of Zaidi's parents Tammi and Patrick, and her siblings Joey, Tyler, Ella and Layla, who passed away in 2016. Zaidi's family treasure the time they spent with Zaidi and believe that she and her sister Layla are now together. SWAN is sending love.
Research Opportunities

Supporting your young person with CP and complex communication needs to talk about puberty, relationships and sexuality

Are you the parent or guardian of a young person (aged 10-24 years) who has CP and uses AAC to communicate?

During adolescence and young adulthood, your young person is going through major life changes. These include things like physical changes related to puberty and developing a sense of sexuality.

We want to know about your experiences talking with them about these important and tricky changes! Please click here for the study flyer and to get involved, please email Megan Walsh.

CYDA National Youth Education Survey 

If you are a young person with disability (aged 10 - 25) you can take part in our National Youth Education Survey.

The survey is for students who are currently at school (K-12) and young people with disability who have recently left or finished school. The information CYDA collects in the survey helps to advocate with government for the rights and needs of students with disability in the education system.

🕢 The survey takes 10-15 minutes to complete.
🗓️ It will be open until 30 November.
🤫 Responses are confidential

Please click here for the survey. 
Hospital care packs - we want to support you!

If you would like some support or if your SWAN child is in hospital, please let us know so we can send a care pack or assist you in any way we can.
Please email with the subject line: Support
Social Media - New Facebook Moderators
Thank you to two of our SWAN mums, Abigail (left) and Maya (right), who have agreed to moderate our facebook group page. Abigail and Maya will help approve posts out of hours and on weekend so that your posts will be seen more quickly by the community.

Please follow us on Facebook, Instagram, Twitter and Linkedin. We also invite your family, friends, colleagues and healthcare professionals to subscribe to our free monthly newsletter.
Facebook Groups

If you have not had a chance to join one of our state-based groups, I would encourage you to do so. These will help SWAN support more families, and allow our families to support each other, through increased opportunities for online or in-person peer support. The links to all our groups and our Facebook page are below.

State-based closed SWAN Facebook groups:

SWAN NSW and ACT Support Group
SWAN QLD and NT Support Group
SWAN SA Support Group
SWAN TAS Support Group
SWAN VIC Support Group
SWAN WA Support Group

Other SWAN closed Facebook groups:
SWAN Australia Support Group (our national Facebook group that many families are members of already)
SWAN Siblings
SWAN Grandparents & Carers Group
SWAN Parents with Kids Over 10
SWAN Bereavement Group

SWAN Facebook Page

Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.

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Our mailing address is: SWAN Australia, PO Box 390, Fairfield, VIC 3078
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