The Federal Election is just days away. See what SWAN has been advocating for and meet our new Community Advisory Group.
Dear Reader,
I hope you had a lovely Mother's Day and have enjoyed some time with family and friends this month. We have been busy advocating to politicians about health and disability issues of concern on behalf of SWAN families in the lead up to the Federal election.
You may have seen our posts on social media on the key issues SWAN is advocating for this Federal Election. These include:
Diagnosis
NDIS
Access to Health Care
Improved Psychological Supports
Support for a Productivity Review of the cost of caring for a child/ young people with a chronic health condition.
We marked Every Australian Counts - Defend Our NDIS National Day of Action with a virtual session. You may have seen some of our stories from the day on our socials, and you can watch the extended version on our YouTube channel. There is a Defend our NDIS rally in Melbourne this Thursday, please download the flyer for details.
You are welcome to help us advocate for change by writing to your local member or candidate and letting them know what SWAN issues are important to you. You can also request a meeting with them to further discuss your concerns, though most politicians will not have the capacity to do this until after the election. We have a template letter you can download and use as is, or personalise the cover letter to share your story. Please contact meheather@swanaus.org.au- 0404 280 441if you would like some help with contacting your local member or candidate or if you would like some strategies on how to make the most out of the meeting.
Voting Information for People with Disability The AEC website has voting information for people with disabilities and/or mobility restrictions. There are easy to read guides that explain the voting process. There is also information about postal voting, accessibility at polling places, options for people who are blind or who have low vision, Auslan services and options for people with dementia. Please click here for details.
VIC State Budget We were pleased to see that the Victorian state budget will continue to support health services in Victoria. The Association for Children with a Disability (ACD) has prepared a summary on how the VIC State Budget impacts families of children with disabilities. This dot point summary may be of interest to SWAN families based in Victoria and can also be found on the ACD Facebook page. The budget includes:
Mental health practitioners in all secondary schools, including specialist schools
More funding for Disability Liaison Officers (DLOs)
$30.7m to continue transport to school for students with disability
Extension of the Family Disability Practitioners to help families navigate the NDIS
Adding Diploma of Auslan to the list of free TAFE courses
Early intervention for Victorian children who do not meet the NDIS residency requirements
Upgrades to 36 specialist schools and 29 mainstream schools
Source Kids and Bill Shorten
Last Monday night, Source Kids hosted a Live Facbook Q & A with Bill Shorten, Shadow Minister for the NDIS. I joined the event alongside other representatives from Autism Awareness Australia, Cerebral Palsy Alliance, Epilepsy Action Australia and Down Syndrome Australia. My question for Bill was about an Independent Advisory Council Reference Group for Undiagnosed and Rare Conditions. Please click here to view the Facebook live event.
Senator Jordon Steele-John
It was great to meet with Senator Jordon Steele-John and his policy advisor Naomi Brooks - The Australian Greens, last week to discuss some of the health and disability issues of concern for SWAN families.
We spoke about the diagnostic journey, the need for Medicare item numbers for genetic counsellors and for genomic testing for SWAN children over the age of 10 (there is currently one for children under 10).
Of course, we also spoke about the NDIS and what needs to happen to improve it, including the need for an Independent Advisory Council Reference Group for Genetic Undiagnosed and Rare Conditions. We spoke about the need for rare disease nurses and case coordinators, particularly in paediatric hospitals. We also touched briefly on psychological supports. We spoke about the need for government support as parents care for their child towards their end of life. And lastly, we spoke about the need for a Productivity Commission Review to understand the financial cost of raising a child with a chronic health condition.
Best wishes,
Heather Renton
CEO - SWAN Australia
Events
May Events
Genetic Epilepsy Team Australia (GETA) Conference - Sydney Children's Hospital and live streamed online Saturday, 21 May - 11:00 AM - 4:00 PM (AEST) and family dinner Sunday, 22 May - 9:00 AM - 1:00 PM (AEST)
Please clickhere to register
SWAN informal virtual chat session Wednesday, 25 May - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
Meet the Experts Session - Evelyn Bugel, Psychologist Monday, 30 May - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
June Events
SWAN Siblings virtual catch up (primary school aged siblings)
Sunday, 5 June - 6:00 PM - 7:00 PM (AEST)
Please click here to register.
SWAN Siblings virtual catch up (high school aged siblings)
Sunday, 5 June - 7:00 PM - 8:00 PM (AEST)
Please click here to register.
Meet the Experts Session - Kate Strohm, CEO of Siblings Australia
Wednesday, 8 June - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
SWAN informal virtual chat session with members who have a SWAN child over 10 years old
Wednesday, 15 June - 8:00 PM - 9:00 PM (AEST)
Please click here to register.
Source Kids Disability Expo - Melbourne Convention & Exhibition Centre Saturday, 18 June - 10:00 AM - 4:00 PM (AEST) Sunday, 19 June - 10:00 AM - 3:30 PM (AEST)
Please click here to register.
SWAN informal virtual chat session
Wednesday, 22 June - 8:00 PM - 9:00 PM (AEST) Please click here to register.
Update: Due to the vulnerability of our SWAN children as we head into Winter, with COVID, cold and flu season ahead of us, we have made the decision not to hold any face-to-face events until further notice. Thanks for your understanding.
SWAN TURNS 10 – HELP US CELEBRATE BY SUPPORTING MORE SWAN FAMILIES
SWAN Australia is turning ten later in 2022, and we want to make sure that as we mark this milestone, we are supporting more families across Australia than ever before.
Over the last year, our support and information service demand has grown by more than 30%.
Our support service is at risk without any ongoing government or philanthropic funding.
This is why we are asking you to help us raise $50,000 to continue to fund our parent support and information service.
Many of you will know first-hand what it feels like to receive specialised support from SWAN Australia. Imagine how hard that would be for families if they had nowhere to turn for support?
SWAN is the ONLY national peak organisation providing information, support and advocating for families with undiagnosed and rare genetic conditions.
Our information and support line assists members with:
Information about support services and helpful advice
Navigating the NDIS and advocacy tips
Connection and support to other SWAN families to limit isolation
Please help us celebrate by giving other families the gift of professional support they deserve and give generously this tax time. Your donation will not go unnoticed, and its impact will be immediate.
Every $50 donation will enable SWAN to provide an hour of support to a family.
Every $100 donation will ensure our website and information resources remain current, providing support for families no matter when and where they need it.
Every $200 donation will ensure we can fund a Hospital Support Pack for a family in need, in hospital, wherever they are across Australia.
Every $500 donation enables SWAN to continue to grow so we can help more families.
If you are in a position to donate, you will make a real difference. However, another way to support this important campaign is to spread the word, as much and as widely as possible. You can do this by;
Reposting our Facebook, Instagram, Twitter and Linkedin posts (coming soon!)
Sending this email onto others who you know, who may be able to help.
Asking your workplace, School, church, community or sporting group if they have a way they may be able to support SWAN, by donating, allowing you to organise a fundraiser or sharing the campaign.
If you have a child with a rare or undiagnosed condition, asking your health professional, specialist, doctor, geneticist, if they could support the campaign.
No family should be alone while they are supporting their SWAN child.
With concerns about Hannah’s health before birth, Sarah and her family did not know what to expect or where to turn for support.
“I am so truly and very thankful for the SWAN and all they do in supporting myself and our family and all the families they help and support. It's not an easy road to travel when you don't know your destination but knowing you have a good navigation team is critical.”
– Sarah Strachan
To read more about Sarah and Hannah’s story, click here.
SWAN Community Advisory Group (CAG)
As mentioned in our April newsletter, the SWAN CAG met for the first time last month to discuss important issues for SWAN families, particularly in the lead up to the election. We are pleased to introduce the group! To read their bios, please visit the CAG page on our website.
(L to R) Maya Pinn, Abigail Rose Burton, Jenny Downing, Sammy Fisher, Alice Roberts-Thomson, Cathy-Jo Tame (Meisha in picture) and Jannine Scott. Other members: Brett Muggeridge, Laura West & Renee Lovi.
Genetic Epilepsy Team Australia (GETA) Conference - Sydney
Dates: Saturday, 21 May 11:00 AM - 4:00 PM (followed by a dinner for families) and Sunday, 22 May 9:00 AM - 1:00 PM
Venue: John Beveridge Lecture Theatre, Level 1, Sydney Children's Hospital, Randwick, NSW AND live streamed online.
We know many of our SWAN families enjoy attending this conference and it is relevant to their SWAN children with epilepsy. Please register to attend the GETA conference 2022 and if you have any questions, please contact Kris Pierce at the Epilepsy Foundation Australia.
Evelyn Bugel - Psychologist Post Grad Dip (Psych), Post Grad Dip (Spec Ed) Adv Dip (Gestalt Therapy) Back by popular demand, we invite you to join Evelyn Bugel as our guest host at our next Meet the Experts Session(see events section above). Below is a brief bio taken from Evelyn's website.
Evelyn is a Melbourne-based psychologist offering counselling services especially developed for carers. Evelyn brings both extensive and personal experience to our session, having been a carer to a child with disability. Evelyn can be relied upon to understand and meet the unique needs of carers who have loved ones with disabilities, mental illness or chronic conditions.
Kate Strohm - CEO and founder of Siblings Australia B. App. Sc., Grad Dip Health Ed., Grad Dip Counselling
We invite you to our June Meet the Experts session with Kate Strohm (see events section above). Below is a brief bio taken from the Siblings Australia website.
Kate established Siblings Australia in 1999, following careers as a hospital scientist, health educator and counsellor, and a print and radio journalist. Since then, she has been invited to present across Australia and overseas to siblings, parents and professionals. Her book Siblings has been recognised as an invaluable resource for siblings and their support networks both within Australia and internationally. Kate brings her own personal experience to the position, having grown up with an older sister with cerebral palsy.
SWAN Siblings Debut!
Joshua Patrick, our Siblings Ambassador, led the first SWAN siblings catch up on May 6th. Do you have a child who is a SWAN sibling and wants to make peer connections? They can sign up via the zoom registration links below or you can sign up on their behalf. They can also join the SWAN siblings Facebook group via the following link: https://www.facebook.com/groups/swanaussiblings. A word from Josh:
Hi again parents/carers and (of course) all the awesome SWAN siblings 👋🏻
I'm Josh, the new SWAN Sibs Ambassador.
We had a super fun first Zoom session last Friday, 6 May. We introduced ourselves ‘virtually’ and got to know a bit about each other. We chatted about where we were from, our interests, schools, favourite and least favourite foods and talked a bit about our SWAN siblings. We even were introduced to one adorable SWAN toddler during the session!
It would be awesome to connect with more SWAN siblings during our next Zoom session scheduled for Sunday, 5 June, 6:00 PM AEST for primary school siblings and 7:00 PM (AEST) for high school siblings. As I said though, you’re welcome to email any time if you’d prefer to get to know me first or feel a bit uneasy about the Zoom meeting; I get that it can be scary to chat online at times. Hope to catch up soon! Take care 😎
For a full list of list of dates, please refer to our events calendar. To learn more about Josh's please visit the Siblings page of our website.
Source Kids Disability Expo - Melbourne
Dates: Saturday, 18 June - 10:00 AM - 4:00 PM and Sunday, 19 June - 10:00 AM - 3:30 PM (AEST)
Venue: Melbourne Convention & Exhibition Centre
Source Kids runs expos annually in Sydney, Melbourne, Brisbane and Perth. Their upcoming Melbourne expo offers the following:
Over 150 disability product and service providers under one roof for two days in a COVID safe environment
A line up of performers set to entertain young and old
A sensory zone to relax in a sensory friendly space
Fun, sport and chill zones to make it a full and fun day out
Thank you to SWAN member Belinda Donkin-Evers who recently raised funds for our Hospital Care Packs program as part of her birthday celebrations. Belinda kindly donated over $1000.00 to SWAN in lieu of receiving birthday presents.
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 you 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 Deepest Condolences
It is with great sadness that we learn of the recent passing of two beautiful SWAN children.
Harper
Harper Murnane, 5 years old, passed away peacefully in his sleep on the 26th March surrounded by his family. He will be much missed by his sister Zana, mum Haidee, dad Matt and extended family and friends. Our thoughts and extended condolences are with his family at this difficult time.
Cosette
Cosette was also just five years old and our thoughts and sympathies go out to her mum Jodi and Cosette's five siblings at this difficult time. Jodi and her family were extremely grateful and thankful for the support of the many specialists, nurses, Starlight Captains and staff at the Royal Children's Hospital, who were involved in Cosette’s care since she was just two weeks old.
Kindred Kindred is a non-for-profit organisation that supports families with children aged birth to 8 years old with a developmental delay or disability and medical needs. Everyone who works for Kindred has a child with a disability and is trained to draw upon their lived experience to support other families.
Click here for some of the free Kindred education events parents can access. Click here for details on Kindred's virtual MyTime session, held every Monday night at 8:00 PM.
Research Opportunities
How inclusive is your and your child’s experience of early childhood education?
Olivia Penna is a PhD candidate at Melbourne Graduate School of Education. Olivia is recruiting parents or caregivers of children with disabilities to reflect on their child’s experience of inclusion in early education.
Participation involves a 45 minute interview. For more information, please see the study advertisement or contact Olivia at openna@student.unimelb.edu.au. Dementia-CONNECT: Connecting the dots in Childhood Dementia disorders
Researchers at The Sydney Children’s Hospital Network (SCHN) are looking for volunteers to help understand the symptoms of childhood dementia.
You can participate if you are an individual or caregiver of an individual who has been diagnosed with a genetic condition associated with childhood dementia. Participation involves a 40 minute survey (either hard copy or online) that assesses several characteristics of the individual with childhood dementia. It also asks questions about the impact that childhood dementia has on caregivers. To learn more about the research study or to participate, please see the study advertisement or contact Jason Djafar at j.djafar@unsw.edu.au. Supporting Families Through Genomic Testing
Parents or legal guardians of children who have had genomic testing since January 2017 are invited to participate in a research study called “Supporting families through genomic testing”. The study aims to understand how genetic services support families of children with rare conditions in Australia. The study involves completing a survey about your experiences with genetics services, including preparing for testing, receiving your child’s genomics results, and any follow-up care provided by genetics services in Australia. The project will help identify what supports are needed and preferred by families. Survey results will be reported back to the study team in an anonymised way to help improve the genomic testing process and genetics services for families going through similar experiences. More information about the study is available at the start of the survey link.
The survey will take approximately 20 minutes to complete and can be completed online by the survey link.
This project is being carried out by the Murdoch Children’s Research Institute (MCRI). The results of this research will be used by Mr George Booker as a partial requirement of the Master of Genetic Counselling degree at the University of Melbourne.
For further information about this study, or to ask for a paper copy of the survey, please contact the research supervisors: Michelle de Silva on 03 9936 6109, Elly Lynch on 03 9936 6315 or Anita Gorrie on 03 9594 2026.
Rally to Defend Our NDIS in Melbourne CBD this Thursday
Things are grim with NDIS cuts and AAT appeals. The stories we’re hearing from people with disability, families, and advocates are horrifying. We can’t continue to have the NDIS operating like this. So we want to help channel the frustration, desperation and concern from the community into meaningful action right now.
The NDIS is a real election issue and the pollies and media are paying attention. We have to make the most of this moment before the election. But as always EAC can’t do this alone - it only works with the actions of good people like you.
EAC has organised a rally to Defend Our NDIS in Melbourne CBD this Thursday, 19 May from 11:00 AM - 12:00 PM (AEST).They will meet at 367 Collins Street, Melbourne and march to 15 William Street, Melbourne.
If you are interested in taking part in person, please register at Eventbrite. Wear red, or your EAC shirts, bring signs, instruments or anything that makes noise. They will have a few t-shirts and corflutes to share, but the more homemade DIY signs the better! There’ll be speakers, music, banners, chants, media!
The event will be livestreamed on Facebook and YouTube (with captions) for people who can’t make it in person. Other ways you can help:
Email your local candidate candidates, using the following form.
Show your support on social media with the hashtag #DefendOurNDIS, take photos and get on twitter to retweet content about the campaign.
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 info@swanaus.org.auwith the subject line: Support
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 contact and virtual peer support. The links to all our groups and our Facebook page are below.
Dates: Saturday, 21 May 11:00 AM - 4:00 PM (followed by a dinner for families) and Sunday, 22 May 9:00 AM - 1:00 PM
Things are grim with NDIS cuts and AAT appeals. The stories we’re hearing from people with disability, families, and advocates are horrifying. We can’t continue to have the NDIS operating like this. So we want to help channel the frustration, desperation and concern from the community into meaningful action right now. 
