Here is your opportunity to meet with clinicians who share the same common purpose: to provide good healthcare for people impacted by Prader-Willi Syndrome. We will discuss potential areas for change to improve access and equity of healthcare services and consider the immediate, medium- and long-term priorities.

Your voice will help co-design what a state-wide model of care might look like for people living with Prader-Willi Syndrome.

When: April 20^th 2023

Time: 9.00 am – 12.30pm

Where: Fundraising Resource Centre, Royal Children’s Hospital, Parkville 

RSVP: Cathie.pigott@monash.edu

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Watch this space for more information about this year’s #15for15 Challenge coming soon

David Rhys-Jones: https://www.facebook.com/DavidRhysJones26
RCH Facebook: https://www.facebook.com/rchmelbourne
RCH Instagram: https://www.instagram.com/rchmelbourne/

The post Join David & Cooper Rhys-Jones with A/Prof. Tom Connell at the RCH Good Friday appeal appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Most of you, like me, have probably thought about your children’s future and for a child with Prader-Willi Syndrome, there are extra concerns.  Personally, as an older parent, my hope is that my son Jayden would have settled into a living situation independent of me so that when I am no longer here and he won’t be hit with losing both his Mum and home and having to go through adjusting to life outside our home on his own.

Jayden does have siblings and I somewhat expect that they would at least oversee his care. My eldest daughter tells me she will have him live with her but I do want there to be a choice. That is a long way away and things could be different then. 

Does this sound familiar to you?  Do you have plans for the future? Do you have a Will and have maybe looked into special disability trusts and the like? 

I was gathering information for this newsletter about the VALID Succession planning course facilitated by Maree Hewitt who also has a daughter with PWS and was given a big wake up call.  What if that future is tomorrow?  Maree’s favourite phrase is “when the big yellow bus comes”!  Yes If I tragically die tomorrow I have a Will to look after the finances and have asked the family to assist in looking after my children. I thought that was all I could do to be ready for the unthinkable. 

Succession planning is as much for parents of young children as it is for those of adults. Having now completed the 4 weeks I have a very different mindset and some of the things I need to think about now are similar to if I had to do a ‘handover’ tomorrow. 

• What are the things that I personally do for Jayden? 
• Who can replicate what I do? 
• Of those people around me who could manage:
  • NDIS planning and reviews 
  • Therapy sessions 
  • Doctors appointments
  • Finances
  • Service providers and Carers
  • Teacher interviews, SSG’s and ILP’s

And these are probably the easy things. 

In Jayden’s day to day life if I had to have someone live and care for him, would they know: 

• Medications and where he likes his needle and what supplements I give him. 
• His diet and my approach to his eating plan. He has dessert after his evening meal every night. He picked this habit up when we stayed with his grandparents but it has in fact worked out well. He has a meal size I have allocated and if he complains about wanting more we move on to dessert which is 2 tablespoons of strawberry Greek yogurt. For him that triggers a completion of that meal time. 
• His hobbies and like and dislikes 
• The fact that he doesn’t like the shower on his head or that I am often a little late because rushing him will result in us being very late. 
• I allow him to watch Spy Ninjas on his iPad and we have a whole series of things that will either calm him down or trigger him. 
• Which people in his family and friendship circle is it important for him to continue having contact with. 

So I think you get it. Wills and future housing planning is crucial but even for a young child there is so much information that needs to be recorded. Have a think about your household. If you have a spouse or partner what kind of information do they know or not know? Generally, a couple will share some care tasks and you may not be up with what the other does to keep life moving smoothly. If you are a single parent, who knows what you do? To be honest, until I sat down and thought about it even I didn’t know exactly what I do. 

So in closing can I just say that it is inevitable when there is a sudden death of a parent that all children’s lives will be turned upside down and new Carers and children will take time to get to know each other. Helping your children to move through the grieving process and start to live a new normal and fulfilling life is a gift. For a child with PWS the more information, a surviving parent, family member or Carer has the smoother the process will be and that is priceless. 

The post Succession Planning appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Living with Prader-Willi Syndrome is challenging for the individuals but can be just as challenging for their family including siblings. 

Children who have a sibling with a disability are often more caring and kind, sensitive and responsive to the needs of others, tolerant and compassionate, mature, responsible, independent and empathetic. They’re also unlikely to take their own good health for granted.

www.raisingchildren.net.au

It is for this reason that we at the PWSA Victoria felt that it was important to acknowledge siblings and provide them with information to help them understand how to care for their brother/sister with Prader-Willi Syndrome and most importantly how to best care for themselves, deal with their emotions and ensure they are putting themselves first.

We are currently working on the next part of the Beyond the Diagnosis series which will help fill the gap in information that exists for younger siblings.

This project will involve creating simple age-appropriate information in the form of a picture book – A storybook for siblings by siblings. Once we have a basic draft ready, we will host an interactive reading session (via zoom) of the book where children from our community can ask questions and help build on the information already contained within the book.

It is our hope that this picture book will also help childcare centres and early childhood educators explain Prader-Willi Syndrome to other children.

Our plan to also develop the above project to include a more informative booklet for older siblings. Expressions of interest for this focus group will be opening shortly. 

This stage of the Beyond the Diagnosis series would not be possible without the generosity of the  Rotary Club of Box Hill Central and  Blackburn South Community Bank Branch (BSCBB) of the Bendigo Bank.

If you are interested in being involved in the initial interactive book reading of the draft storybook for younger siblings (under 7), we would love to hear the honest feedback of our young book critics.  Please register your interest by emailing info@pwsavic.org.au 

The post Interactive Story Time appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

As an infant, we had weekly group physio sessions at Noah’s Art Toy Library in Prahan. From there we attended Elwyn Morey Children Study Centre at Monash university which ran preschool sessions with a special focus on language. Hayley started prep in a local main stream school but two years in she was struggling and we moved her over to the special school system. And before I could believe it, our little girl was 18.  

After visiting several day centres we came across Bayley House in Brighton. I remember my first walk through where a client stopped us. He wanted to discuss this retirement. I knew we had the place for Hayley and fortunately she was accepted.  

A year or two into Hayleys time at Bayley House, Hayley began developing anxiety issues. They intensified to the point that they were impacting on every aspect of her life. Fits of rage were a regular occurrence and Hayleys behaviour was deteriorating. Finding someone would help us was our next hurdle. Medicating was seen as a chemical restraint. This was an awful time as we saw daily the torment Hayleys deteriorating mental well-being was causing her.  

It took over a year until I came across a medical physician with a family member who was disabled who could relate. Hayley was given medication and her whole world changed. Within weeks Hayley was telling us she felt so much better.  

And in this new found state, Hayley discovered her art. Prior to this she wouldn’t attempt such an activity as she was frightened she would “get it wrong.”  

With the guidance of the wonderful staff at Bayley House, Hayley has produced numerous works. Of course her favourite subject matter is food. 

Each year Bayley House hold an exhibition of the clients art work at the Bayside council chambers and a piece of Hayleys work sits proudly in the mayor’s office. She loves her painting and each piece is done with a certain person in mind.  

While Cindy, her art teacher, was holidaying, Hayley painted her white Westie only to exclaim on completion “l am never painting white again. There are just too many whites”.  

Not only has Hayley discovered a happy place through painting, she delights in the joy they bring others. 

_{This article was written by Annie James (Hayleys mum) and shared with her consent.}

The post Discovering the artist within appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

It seems like a lifetime since our community have been able to gather together, renew our friendships and meet new families. 

The PWSA Victoria Time Out Camp is like no other camp on offer. Whilst there are many camps available to children and adults through mainstream and special needs service providers, there is none that cater to the whole family.  

At the PWSA Victoria Time Out Camp, families are able to enjoy time out with their own family unit and adults with PWS are able to enjoy some time away in a safe environment that supports their needs, all while finding friendship, sharing laughter, feeling supported and understood from peers who are all experiencing the same challenges and understand the excitement of achievements that others don’t understand or appreciate.

Mixing with other families and individuals living with PWS is so rewarding for the children and adults with PWS, the siblings and the parents as we all have an understanding of how PWS can affect each other. 

Financial Assistance

We understand that not all families have received funding under their NDIS plan to enable them to attend the PWSA Victoria Time Out Camp, and although fees are subsidised this can still be a substantial cost for many. If you are a current member of the PWSA Victoria and have been since January 1st 2021 and experiencing financial difficulty, please contact Sarah Rees via email (sarah.rees@pwsavic.org.au) or telephone 0408 304 279.

After the year we have all had, everyone deserves some Time Out in a supportive environment and this is certainly the place to be able to do that.

Educational Speakers  

We have some educational guest speakers lined up for parents and Carers.  Carers Australia will be speaking to us about the new portal Carer gateway and their new offerings. They will also be providing information about Young Carers. Siblings who take on a caring role by just being part of the family are not necessarily primary Carers. Young Carers Victoria has programs for young people and many exciting benefits available. 

More speakers will be confirmed over the coming month.

AFL Grand final 

Due to COVID and the many postponemnets of the PWS Victoria Time Out Camp, we have had to reschedule the camp for the weekend of the AFL grand final this year. We understand this can be a big event for many and so the Saturday will be designed to give those who are interested in the game an opportunity to watch the match on the big screen.

PWS Connect Day – Footy Theme

Given that most of our members and volunteers will be at Camp Toolangi for the weekend of our September PWS Connect Day, we have decided to host our community day at Camp and we therefore encourage any members who aren’t at the camp to come along and celebrate Grand Final. This will be a footy themed day and we ask that you come bearing your teams’ colours and we will provide lunch on the day (Further details to be provided closer to the event)

This is also a great opportunity for those who are curious about the camp but not yet wanting to commit, to come along and see what all the fuss is about. Who knows, you may not want to leave!

Employed carers 

If you have organised a Carer to accompany an adult who attends the camp alone, PWSA Victoria will cover the cost of food and accommodation for that Carer. NDIS does not cover these costs. If you have an older teen under 18 who you wish to have assisted by a Carer, these costs will also be covered. However, the family or at least one member of the family must also attend the camp and as with the adults, the Carer must be organised utilising their own NDIS funding. 

There is a separate registration form for Carers, so, please do not include them in your family registration. 

Further Information

• Download 2021 Time Out Camp Brochure
• Download NDIS Information

Registration 

Registrations are now open for the 2021 PWSA Victoria Time Out Camp, and you can register now using the following registration form:

If you have any questions? Feel free to contact us confidentially at info@pwsavic.org.au 

For continued updates as the camp draws closer, please join the Facebook group: 2021 PWSA Victoria Time Out Camp 

The post PWSA Vic Time Out Camp 2021 appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

The next step in the process is to hear from stakeholders, including families living with Prader-Willi Syndrome. Shortly, we will be inviting you to participate and have your say on what you find currently works well within the hospital network and beyond, and where you believe improvements can be made.  This will be done via an online portal and will allow you to easily provide input in your own time. The portal will be open for a number of days. There will be a separate allocated time, for health professionals to provide their feedback in the same manner. After this feedback is collected, the team can begin to fine-tune the areas to be included in the further development of the project.

Eventually, we will be looking to develop a smaller focus group to further brainstorm with selected clinicians to refine areas of concern and need. 

The State-wide care plan is an ongoing project and all those involved are quite excited to see where this initiative will lead. 

Once established at the two major children’s hospitals, the care plan guides will roll out to all hospitals in Victoria and the aim is for the information to trickle down to all paediatricians and eventually all GP’s and health care professionals. 

Although each state of Australia has its own health system, and this project doesn’t have the ability to roll out from here nation-wide without a plan to do so, it will provide a template allowing other states to implement with a minimum of replicated effort. 

Our 2020 and 2021 annual PWS 15 for 15 Challenge fundraisers have successfully funded this project to date and will do so until project completion. This is certainly one of PWSA Victoria’s most worthwhile, most needed, and most ambitious projects that we have initiated in quite some time.

Once again, thank you to our PWS 15 for 15Challenge participants and all those who have donated for creating this opportunity for improvement in our children care as, without you, this would still just be a dream.

Please keep an eye out for information inviting you to have your say on our website, social media and in a separate email. 

The post State Wide Care Plan appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

A carer is a person who provides unpaid care and support to a family member or friend with a disability, mental illness, chronic health issue or age-related condition.  

www.carersvictoria.org.au

Carers Victoria is the statewide voice for family carers, representing and providing support to carers in Victoria. They work to ensure that caring is a shared responsibility of family, community and government. Carers Victoria want to support carers better and want to make carers’ lives better.

Some of Carers Victoria core work includes

• Being the ‘voice’ of carers
• Raising awareness of carers and caring in our communities
• Being the place to go for all carers and for information about carers
• Providing effective, quality services and programs to support the needs of carers and the people they care for
• Create innovative services and products to meet the needs and service gaps for carers and the people they care for

Recently, the Australian Government has re-designed services for carers to better suit carers needs. Under the new arrangements, funding for existing services have merged into a single Carer Gateway. Carers Victoria is providing services on behalf of the Carer Gateway in the western metro region

The new arrangement begun in April 2020 and provides carers with a single point of entry within their region to have their needs assessed and be referred to supports such as in-person counselling, coaching and peer support.

The Carer Gateway provides support to carers across Victoria and offers in-person counselling, connects carers with other carers (peer support), coaching, carer directed support (including packages), respite care, which includes planned and emergency respite.  

You are eligible regardless of whether the person you’re caring for is on a package (NDIS, Home Care Package (HCP)), or receiving other supports such as Commonwealth Home Support Program (CHSP). There are no citizenship or residency requirements – asylum seekers can receive Carer Gateway support. Centrelink payments (Carer allowance, etc.) do not affect eligibility in any way. 

Online support can be accessed at www.carergateway.gov.au. This includes free telephone counselling, online carer coaching, peer support and skills courses. Carer Gateway can also help carers find information on planning for carer payments, legal matters, emergency situations and more. 

Carer Gateway is here to support young carers  

Did you know that more than 235,000 people in Australia under the age of 25 care for a loved one with disability, a medical condition, mental health condition or someone who is frail due to age? They regularly have to juggle work, study and life commitments at the same time and often prioritise caring for their loved ones.  

Caring responsibilities can place a heavy strain on young carers as they try their best to manage and balance education, training, work and caring. As alienating as this can be, there are support services available to help young carers and they don’t have to be the primary carer. 

Carer Gateway is an Australian Government initiative that connects carers with a range of services such as counselling, online skills courses, respite care and financial support through Carer Directed Support Packages. Carer Gateway also has peer support groups and an online forum, which creates a safe space for young carers to connect, share stories and seek advice.  

If you are a carer or know a young carer or carer, help them out by letting them know about Carer Gateway. More information and online services are available on the Carer Gateway website: carergateway.gov.au or carers can call 1800 422 737 Mon-Fri between 8am and 5pm local time to speak with a representative who can help carers and young carers get the support they need. 

The post Who Cares for the carers? Carer Gateway! appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Michael passed away peacefully on Tuesday 8^th December 2020, aged 37 years. 

Michael’s funeral was on Thursday 17^th December 2020, thankfully COVID restrictions had been eased somewhat and 60 special family members and friends were able to attend.

It was a week before Christmas when Michael’s celebration of life was conducted and our home was adorned with Christmas decorations and presents under the tree, many for Michael as his sisters always shopped online well in advance, particularly this year with COVID restrictions!

Below is an edited transcript from the lovely celebrant who conducted Michael’s funeral.

Michael Andrews was born on Wednesday 11^th January 1984 at the Sandringham hospital to parents Claire and Ron. A planned Caesar, Michael had to be transferred to the Royal Children’s, and after a couple of weeks once he was feeding well he was sent home with his Mum and Dad to Black Rock. It was such an exciting time for everyone, with Michael the first grandchild for Claire’s parents – all his grandparents loved him and enjoyed the time they spent together.

Michael was two months old when he was diagnosed with Prader Willi syndrome – something that had no bearing to Michael himself as he enthusiastically embraced everything in his lifetime with a “why not?” attitude – his words!

Michael was a good baby, with early intervention he was walking by the time his first sibling arrived! Michael’s younger sister Kate was born in 1988 and then Elise in 1990. Michael absolutely adored being a big brother to both the girls. He was also close to all family members, particularly his cousins, who he loved to play with. It was a very busy household in the early years with Michael attending a 3 and 4 year old kinder programme, along with the assistance of an aide. Even from an early age his love of painting and craft was evident and he was lucky to be in environments throughout his years that supported and nurtured his talent for all things artistic! He was such a social young man, loved interacting with everyone and was a whizz at jigsaw puzzles which later flowed through to word searches, crosswords and logic puzzles – he had the patience of a saint when it came to concentrating for a good deal of time on these activities! It was a lovely environment at the kinder which naturally led on to him attending the primary school with his sisters. Along with his integration aide, Michael participated in most activities across the seven years at primary school: he was part of the footy team, he loved art and whether it be music, singing or performing – and he was happiest if he got a solo part! He learnt to read and write, he had a great network of friends, would be invited to parties and his supported him fully. Michael was a friendly happy go lucky person to be around.

Michael moved on to a specialist secondary school in Moorabbin where he remained until eighteen. In these years Michael learnt living skills, good play station skills, he loved arts and craft subjects and swimming. Michael enjoyed so many excursions: horse riding and his all-time favourite, ten pin bowling. From about the age of 14 he would play weekly: Saturday mornings would find him with some of his school friends playing for the Sunshine League at Moorabbin Bowl. He loved it, and was really good too, earning himself some trophies along the way.

Michael was never shy, you might say, attention-seeking and so if the school needed a spokesperson, Michael was your guy!!!

After he finished school he would be collected daily and head to Bailey house where he participated in day programs through the centre. Michael was easy to get organised in the morning: he would be up at 6.00 am and out the front by 7:30 waiting for the bus that wouldn’t arrive until just before 9am! He was always someone who was first to arrive and last to leave – he simply loved being a part of anything. Time for immunisations? Michael was first in line! He was enthusiastic about everything. The family learnt not to tell him about things ahead of time because he would be ready hours or days ahead, eager for the excitement to begin. Birthdays were special, he remembered everyone’s special day (phone numbers and numberplates too!) and loved to celebrate. He enjoyed giving people gifts so Mothers Day and birthdays were always important for Michael. However Christmas was his all-time favourite celebration on the calendar: he had to have the most number of presents (100 $1 presents was preferable to 1 $100 gift!) Michael would be up at 3am on Christmas morning – he loved the extravaganza of the day from the gifts to the food and especially all the family together! They would have large Christmas parties and he loved celebrating along with his younger cousins – there was nothing better.

Michael loved the program at Bailey house for a good sixteen years. The Christmas Concert was a highlight of course. Because he had such a great memory for the words of songs, he always had the starring role for the performance. He also loved the annual cricket match that he participated in against the Elsternwick Cricket Club – I’m sure Michael suffered from FOMO: fear of missing out!

At age 28 Michael decided he wanted his independence and through DHS he moved into Watson Grove – a home that he shared with four other residents. Whilst living there he developed a good level of independence and was happy to have had the experience. And he was always popular with the girls and had a few girlfriends over the years!

Whilst there he experienced a seizure in late 2017 and it was later discovered he had a brain tumour. He underwent radiotherapy – again in true Michael style he embraced the treatment with a positive can-do attitude. He wasn’t fazed with the mask that was made, the treatment, the hair loss, the blood tests – he was there early, excited to go to the appointments, keen as mustard! We have a lot to learn from Michael about attitude!

The last few years have been filled with hospital stays, a leg infection and then the acceptance of a wheelchair after rehab which led to him moving in to Japara nursing home in February this year. Once again, Michael embraced this next stage with a positive attitude and called it “his house” – he loved the other residents and the staff, making this next transition so much easier for everyone. The staff were incredible and supported Michael so well with all the care he required at this stage.

Michael has no fears, he has embraced everything in life and with his strong willed way, even at the end of his life he did it, “his way.”  He had the cheekiest smile, the funniest things to say and a big belly laugh! Staff at Bailey House described Michael as “a one in a million.” Despite his challenges, Michael just wanted to be included, never judging anyone. His face would simply light up when he saw your face – what could be better!

Michael leaves you now, at rest, knowing that he loved and was loved.

Michael’s uncle Brian also spoke at the celebration of life regarding the lighter and funny aspects of Michael’s life. 

Michael had a photographic memory for my credit card and often subscriptions to magazines and Readers Digest items would appear on my Mastercard bill to my horror.  He also participated in phone surveys excited by the prospect of winning vouchers. 

Michael’s uncle also commented that Michael always believed he could achieve anything he wanted to do, VicKick, swimming, basketball, cricket, nothing was an obstacle to Michael and he joined in enthusiastically!

Michael’s final goodbye was that he was moving on to the next big adventure. 

His legacy was that life can deal you a touch deck of cards, but always Michael found the positive in everything, he not only enriched his own life but also the lives of those around him who loved and cared for him.

Michael loved everyone he met; he only saw the positive in everyone.  Michael’s big smile, loud laugh and positive attitude will be remembered by all of us forever

Details within this article have been provided by Claire Andrews (Michaels Mother) and shared with our community.

The post A Tribute to Michael Andrews appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Constructed with 3 ply fabric…

• Layer 1 is made up entirely of polyester and spandex which not only allows it to be breathable but ensures the mask will shape itself comfortably around your face, minimizing access to your mouth and nose.
• Layer 2 is a non-woven fusing which actively filters the air you breathe and is essential to creating the effectiveness of CGR’s Face Mask.
• Layer 3 is also made up entirely of polyester and spandex to ensure that the mask will keep its shape.

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