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Greetings to you all,

I hope this update finds you and your families healthy and staying safe during this most unusual of times. There will not be a member of our community who is untouched by the current health, economic and social disruption we are experiencing. Some will be impacted by all three, and it is so important that we come together to support each other in any way we can.

The Angelman Syndrome Association Australia (ASAA) committee has been busy over the past few months lobbying and advocating for our families at the highest levels of government to ensure that we have an appropriate medical and disability framework to help us navigate living in a pandemic.

This started in February 2020, after a truly wonderful International Angelman Day around the country, with the Federal Government launch of the
National Strategic Action Plan for Rare Disease. This is the incredibly important blue print for the management of health, testing and diagnostics, and research to support improved life outcomes for people living with rare diseases.

Kane Blackman, Vice President of ASAA and Vice President of Rare Voices Australia, gave a moving and powerful speech, sharing the experiences that he and wife Sarah Blaq have had on the AS journey.
You can see Kane's speech here -  https://www.youtube.com/watch?v=gM4rsroy0-8

Who would have known we would come to rely on this Action Plan so quickly but in March, as the threat of the COVID pandemic was made real in Australia, we actively sought government clarification on how people with a disability and rare disease would access and receive medical treatment and disability support. 

Our written submissions to Federal Health Minister Greg Hunt and NDIS Minister, Stuart Roberts, were bolstered by having Jaquie Mills, amazing AS mum and powerful advocate, present to the Australian Health Protection Principal Committee (AHPPC) on the challenges of living with a rare disease and intellectual disability in the COVID crisis.

The result was the development of the Federal Government Plan - 
Management and Operational Plan for People with Disability

I encourage you to download and familiarise yourselves with these resources.
 
Rare Voices Australia Plan on a Page
Federal Government Management and Operational Plan for People with Disability

We have been championing the needs of our community through social media blogs and magazine articles - even ending up with a spot on Channel 7 news!

Thank you to our very own Emma Price, Source Kids magazine owner and AS mum, for getting our story out there. 

Read 'Social Hibernation and the Vulnerable'
in Source Kids COVID-19 Survival Guide Special Issue - Part 1

Read 'How COVID-19 has impacted our medically fragile rare disease community' in Source Kids COVID-19 Survival Guide - Part 2
 

 

We are destined to live with COVID-19 and other similar contagious viruses for years to come. As social restrictions relax, and state and international borders slowly open, as we remain vigilant to the risk of infection, it is a good idea to be prepared.

There are some useful resources available to help plan for a range of circumstances, including the need to access medical attention or hospitalisation for our loved ones with AS, through to reviewing your NDIS Plan or accessing additional services and supports.  

1. Video Libary - 'Our Normal'
One of the handiest resources to have available on your phone is a video library  of your loved one with AS, doing their normal things - their normal demeanour, communication, feeding and fine/gross motor skills. This provides a quick baseline for you to help medical and allied health professionals know what your 'AS normal' is and to highlight things that are different. It can challenge the bias that things are related to AS as opposed to a chronic issue.

2. Person-centred emergency preparedness planning for COVID-19

This resource assists you and your loved one to plan for how you will manage the impacts of the pandemic, and it can be tailored to your unique support needs. 

3. Coronavirus (COVID-19) hospital companion for people with disability

This tool can assist you planning in case your loved one needs to go to hospital. The COVID-19 companion helps to convey important personal information to health professionals - especially those who have not met your family before. 

4. NDIS COVID-19 Resources
There have been changes to approvals, plan reviews and pricing through out the pandemic and they are under regular review. Visit this site regularly if your loved one has an NDIS Plan. 

Have your say: First Nations People with a Disability 

The Royal Commission is seeking the experiences of our First Nations people with a disability - the latest issues paper explains. The Royal Commission is interested in examples of laws, policies and practices in different settings that are working well or not working. This can be in areas such as education, healthcare, workplaces, the justice system, home, online communities, and families.  Individuals and organisations are encouraged to submit to the issues paper by 11 September 2020, although submissions will also be accepted after that date.
If anyone in our Angelman community would like further information or assistance in preparing a submission please contact us at info@angelmansyndrome.org

Find Out More
There is so much that is happening in the advocacy, support and research into Angelman syndrome this year, that ASAA and Foundation for Angelman Syndrome Therapeuritcs (Australia) are disappointed that our 2020 Joint Conference needs to be postponed until next year. We are continung to work out ways to keep you updated on the latest research and information. So stay tuned!

If you would like to be involved in the ASAA Committee, or some of the projects we have underway, please get in touch - whether it is an hour, a day or a week you can spare, we can always use your help. 

Please take care of each other, and if you need any support, reach out to your State Representative or the ASAA committee at info@angelmansyndrome.org.

Stay safe and take care,
Fiona Lawton

National President
Angelman Syndrome Association Australia
Angelman Syndrome Association Australia
Angelman Syndrome Australia
Angelman Syndrome Australia
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Copyright © 2020 Angelman Syndrome Association Australia


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Angelman Syndrome Association Australia
PO Box 554
Sutherland, NSW 1499
Australia

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