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Ask About Down Syndrome App
Have you downloaded the Down Syndrome Australia (DSA) Ask About Down Syndrome App? This is the world’s first app providing information about Down syndrome, which has been developed alongside people with Down syndrome.
The app has been developed to support and promote inclusion across employment, education, health and community and sporting groups. The app features people with Down syndrome answering important questions and sharing stories about what supports inclusion, what the barriers are and how these can be addressed.
The Ask About Down Syndrome app is now available from the App Store and Google Play! Download it now and tell us what you think!
Prenatal Screening and the Medical Services Advisory Committee
We were pleased to learn last week that the Medical Services Advisory Committee (MSAC) has decided to not recommend the public funding of the Non-invasive prenatal screening (NIPS) test.
We understand that access to prenatal screening is important for many families and respect the right of women to have prenatal screening if they choose to do so. Women can continue to access publicly funded screening through the combined first-trimester screening and some families will choose to access NIPS privately.
It is absolutely essential that any genetic screening program in Australia is done ethically and that families have access to balanced and timely information. The evidence suggests that despite the existence of guidelines, families are not getting the information and support they need to make informed decisions.
This is a great example of the advocacy work we get involved in, in this case led by Down Syndrome Australia. Thank you to all of our supporters who have been part of raising these issues and providing their input to the MSAC process. Read more about it here!
Coronavirus & DSQ
Over the past eight weeks the DSQ team have successfully implemented various alternatives to our usual program of events and support. It’s been fantastic to see you, our members, get involved and adapt with us to the changing environment we now live in. Thank you for taking this journey with us! Listed below are just some of the things we’ve been up to over this time, to ensure we can continue to support our families and individuals with Down syndrome.
- We made a number of coronavirus specific resources available to our members (available here)
- We are now delivering regular Social program activities via Zoom
- Our CEP class is now running online three days a week
- Music Playgroup and Choir are online
- We are delivering support for parents and carers via Zoom meetings, warm calls and individual support
- Our NDIS Support has kept our members up to date with current changes
- Our workshops are now online
- Our Support Co-ordination activities are now available Statewide
- We have delivered hints and tips and a large webinar to parents and teachers to support them in Learning@Home
As we see restrictions starting to be slowly lifted we have commenced planning what these changes in restrictions may mean for DSQ. We may see some things return to relative normality in the short term but other things such as face to face social activities and CEP classes may take longer and activities involving larger gatherings (StepUP!, conferences, workshops etc) even longer again. Watch this space!
Down Syndrome Queensland YouTube Channel!
We have produced and released several new videos about various topics. Why not become a subscriber of our YouTube channel to be sure not to miss anything? We will be using the channel as a hub for all our video content. Click here now!
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Welcome Tanya McConnell!
Tanya joins the DSQ team as our Early Years Officer. Tanya is a social worker with over 20 years’ experience, most recently with the Early Childhood Early Intervention part of the National Disability Insurance Scheme. Tanya’s role at DSQ includes working with families of children and young people aged up to 14 years providing a variety of support including:
- Assist you with getting ready for your child’s planning meeting or review.
- Providing up to date information and assistance to families and carers on matters including prenatal diagnosis; understanding the medical language and possible health impacts; or providing information about Down syndrome and what that might mean for a child’s development and daily life.
- Facilitate introductions between new members with other families who are raising a child with Down syndrome
- A range of information sessions, webinars on a range of topics related to the early years and facilitate support groups and family gatherings.
- Accessing childcare or starting school. Or, if your child is already at school and you would like some assistance with advocating for their needs, including IEP meetings, or stakeholder meetings.
- Providing information and referrals around daily life such as sleeping, feeding, toileting or behaviour
Tanya added, “I am very passionate about early intervention and early childhood development but I am also very passionate about supporting the entire family’s needs alongside the person or child with Down syndrome. Sometimes, families also seek advice around how to support their child’s siblings to understand Down syndrome and what this means for their own life and we can also support in this area, so please reach out with any questions or concerns.”
School Advocacy and Supports for Families Throughout Queensland
Did you know that DSQ can assist with supporting you and your child in their learning environment? This can include;
- Discussing effective communication strategies for you to feel heard
- Supporting you with stakeholder meetings
- Supporting you through the IEP / ISP process
In conjunction with our Education Consultants, we can also support you and your child’s school with information on;
- Inclusive education
- Visual supports
- Behaviour supports
- Social stories
- Transitions
- Communication supports
To read more about this service and how it has already helped many families click here.
Coffee and Catch up!
During May, we organised a Q & A session for families and a number of parent get togethers where a range of topics were discussed including; access to support co-ordination during Covid-19, NDIS review process, transitioning to Prep class, school advocacy, puberty & sexuality, building friendships, accessing DSQ programs & pre-natal experience sharing.
Due to the success of these virtual events, DSQ will be holding ‘Coffee & catch up” sessions each Tuesday morning at 10am for the whole of June. All age groups throughout Queensland are invited to join and take the opportunity to ask any questions of DSQ, or the families that join in & connect with other families. You can join by clicking this link.
Not sure whether to join in? Read some great feedback on past sessions below:
“ Joining the zoom DSQ session was easy and I enjoyed the fact that even though we are isolated it gave me a chance to chat to other parents and realise everything I had been dealing with and thinking these past couple of months was also how others had been feeling too. It was good to be able to voice any concerns with people who get it, and also get tips from them. It was great to stay connected and I didn't realise how much I needed it until I was there!”
Housing Needs Catch Up Session
On Tuesday 26 May at 12pm.... we will be hosting a family catch up as an opportunity for you to discuss housing needs. Register now at the link here!
Whether your family member is already living independently, or looking to move out of home in the future, we invite families to come and share their questions, thoughts and experiences.
It will also be a great opportunity for DSQ to gain some feedback and direction from families in regards to how we can support families in this space and what topics to consider in the future.
DSQ Housing Information Session Series – 17th June 2020
In this session, we are hoping to provide families with information on how they can support their family member to seek out the right flatmate. What are some things they need to consider about the flatmate? Where would they find somebody? Once they find a flatmate, what happens now?
Topic: How to look for flatmates
Date: Wednesday 17 th June
Time: 5-7pm
Venue: Online
This workshop will be held online via ZOOM. Once you have registered for this workshop via Eventbrite via this link https://www.eventbrite.com.au/e/second-dsq-housing-information-session-tickets-102219786132, the details of the webinar and the ZOOM link will be emailed to you during the week of the workshop.
Upcoming Support Services Sessions / Webinars
The support services team will also be offering sessions & webinars on topics listed below. Keep an eye out for details coming soon!
- What is Early Intervention and what does it mean for your child and family?
- Making the most of your child’s ECEI planning or review meeting,
- Exploring dual diagnoses when a child has Down Syndrome – ensuring the right supports are in place for your child when they have co-existing other disabilities or health conditions
- Behaviour supports – finding the right behaviour management style for your child and their unique needs
- NDIS Unscheduled & reviews and change of circumstances review process
- Exploring in detail NDIS s34 Reasonable and Necessary
- Puberty & sexuality
- School advocacy
- Transitioning to Prep, primary school to high school & from high school into employment/training
- SLES
Carer Supports
Last month, a new national support service for carers was launched – the Carer Gateway. It’s a great go-to in the first instance when seeking information on supports and services available to carers, including respite; financial assistance; planning for emergencies; counselling; and so on. You can find out more by visiting their website here or phoning 1800 422 737.
Carer Gateway can provide carers with one off funding of up to $1500.00 to help with funding specific items – for example, the purchase of a new appliance when one breaks down unexpectedly. Carer Gateway can also provide an emergency respite response. Through the Carer Gateway, young carers may also be able to access one off financial assistance.
Little Dreamers is another program linked in with Carer Gateway, which assists young carers through offering online peer support groups (and prior to COVID 19, services were also offered in person). They help young carers to understand that things like worrying about / putting the needs of their loved one/sibling with a disability above their own; or having to miss out on their own activities due to having a family member with additional needs are also factors that recognise they are a young carer. You can find out more about support for young carers at https://www.littledreamers.org.au/
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Recent NDIS Changes
Over the past month the National Disability Insurance Scheme have quietly announced some changes to how participants can use their funds.
CORE support funding is now entirely flexible for AGENCY MANAGED and PLAN MANAGED participants. The Agency have said this will also role out for Self Managed participants in June. What this means, is if you have a Plan Managed or Agency Managed plan, you can now use your Core funds across any subcategories, even if you had no funding at all in that category previously.
As always there are a few caveats. For example, if you receive periodic transport funding from the NDIS directly into your bank account, you can only use your Core funds across three sub-categories excluding transport. For more information, check out the link here.
All of the recent changes are listed on the NDIS website. These include Access Request Forms are now available to download from the NDIS website and new FAQs for Early Childhood participants. For the latest, see here
Free Tools and Resources
- PREPARING FOR YOUR SCHEDULED REVIEW WEBINAR
Prior to COVID-19, we hosted a live webinar on Preparing for your Scheduled Review. This provides a step by step process for NDIS participants, parents and carers to follow so you can feel confident when it comes to your Review. A recording of this webinar is now available on our Youtube channel. Check it out here!
- SCHEDULED REVIEW CHECKLIST
We've got free workbook to guide you through preparing for your Scheduled Review. For a 'how to' utilise it alongside the webinar, or it can be used as a standalone resource. Don't hesitate to contact our NDIS Support Services Officer, Casey, for more information and how to collect your workbook. Email ndissupport@downsyndromeqld.org.au
Who gets Support Coordination funding?
Not every participant is funded for Support Coordination, but everyone can ask for it. Your best chance of having Support Coordination included in your NDIS plan is to highlight the reasons why you want and need it. You can provide these to your NDIS planner at your meeting. Examples include:
- You may be new to the NDIS and its processes – and so need guidance and support
- You may require assistance with making informed choices and controlling how your NDIS plan is implemented.
- You may need help in selecting the most suitable Service Provide for your particular situation
- You may have multiple disabilities
- You may have changing or complex support needs
- You may have few or no support networks
- You may not be confident using the Internet
If you have any questions, please give our Services Support Team to discuss in further detail. Email supportcoord@downsyndromeqld.org.au
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DSQ Karaoke & Talent Show
The highlight for April’s Social Programs was the Karaoke & Talent Show held on the evening of Wednesday 29th April. More than 40 audience members tuned into Zoom to see some amazing performances from our DSQ Club and DSQ Teens members. We had singing, dancing, guitar playing and a comedy routine that had us in stitches. A great big thanks to everyone who performed on the night. Olivia, Taylor, Jeremy, Matthew, Zavier, Sonya, Renee, Kirrin, George and Kirra. The next show (on Friday 29th May) is shaping up to be even bigger and better. Contact programs@downsyndromeqld.org.au if you would like to be a part of the audience.
Online Social Programs
Using the Zoom platform for Social Programs is continuing to be successful with more and more people joining in to the Trivia, Charades, Drawing and Lunch Club. DSQ Lunch Club is the regular ‘go to’ event for many people, with sometimes 10-15 people joining in, including some surprise special guests including Reality TV star Angie Kent, Celebrity Chefs Dan & Steph, Olympic Gold Medalist Matthew Mitchem and Stage and Theatre Star Aurelie Roque! If you would like to join into DSQ Lunch Club, it happens every day (M-F) 12-1pm and is a great opportunity for socializing with other members of DSQ. It costs $5 per lunch (NDIS funded) and is invoiced at the end of each month. Here is the link to join https://zoom.us/j/98283841362 Meeting ID: 982 8384 1362.
Social Skills Photo Challenge
We are in the final week of the DSQ Social Skills Photo Challenge. The aim is to showcase how people interpret social skills and get people thinking about how they display good Social Skills. We have already highlighted Team Work, Listening, Respect, Sharing, Helping, Communicating and Problem Solving. This week we are highlighting Encouraging Others. Anyone can participate by sharing photos on Instagram and Facebook, or emailing them to programs@downsyndromeqld.org.au
Challenge Weekend
Many people have asked about the Challenge Weekend planned for August this year. At this stage we expect the Challenge Weekend to progress on the dates planned, although we will be doing everything, we can to ensure the safety of everyone involved and will be following advice from the authorities. This may mean some changes are made to how the weekend is run. If you are registered for the August Challenge Weekend and have any concerns, please contact programs@downsyndromeqld.org.au
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Our Continued Education Program is online and you can try it for FREE!!
Regardless of where you live in Queensland, if you are an adult with Down syndrome who has finished formal schooling but continue to have educational goals, enjoy learning and would like the opportunity to engage with an online program with like-minded adults this opportunity is for you! CEP offers a wide variety of fun and interactive learning activities, including a public speaking program - Class Masters and our weekly quiz and you can join in and try it for FREE FOR ONE WEEK to see if it suits you (the program is then accessible through your NDIS Plan). Want to more? Click this link!
Program Times and Days:
Spaces are available in our Wednesday, Thursday and Friday classes in this new online format (run via ZOOM). Classes run from 9am – 12pm or 2pm depending on the day.
For More Information:
To register your interest or find out more, please email coordinator@downsyndromeqld.org.au – places are limited so get in quick!
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Why Inclusion Not Integration?
Many of you will recall the video produced by DSQ “What is Inclusion” which showcased the difference between Segregation, Perceived Inclusion and Genuine Inclusion. This blog referred to below provides further evidence to support why we need to strive for Inclusion and not Integration:
“Integration failed due to its lack of consideration and alterations of "organisational structure" and "pedagogical routines". Although students were placed in the same classroom, there was emphasis on the need for individuals to 'fit in' and adjust to the expectations of their peers. This created a negative focus on "how do I become like others?" It is obvious that integration does not consider the holistic needs of a child, including their social and emotional needs. Why should an individual feel the need to be like somebody else? Why not just be themselves? Placing individuals into a classroom without reasonable adjustments, changes or modifications merely scratches the surface of providing equal opportunities for them.”
You can read the full blog here.
Free Upcoming Education Information Webinars
Note these webinars are aimed at teachers or teacher aides of students with Down syndrome but Parents are also welcome to join.
- Positive Behaviour Supports – 4 June 3:30-4:30pm
This free webinar will look at some of the common behavioural issues that are often seen in students with Down syndrome. It will give strategies and practical examples of how-to best deal with and redirect unwanted behaviours in an educational setting as well as home. It will also outline some of the simple thing’s educators can do to reduce behaviours from becoming an issue/problem. https://events.genndi.com/channel/behaviourjune2020
- Reading Our Way Information – 18 June 3:30-4:30pm
This free webinar will give you a breakdown of the research behind this program as well as the success many schools are seeing. It will give you the necessary skills to be able to successfully implement the Reading OUR Way program into your home, school or centre. You will hear about our unique program and its errorless learning technique, relational learning style and scaffolded approach to teaching sight words. This program is best utilised as part of a whole reading program and can be incorporated into an inclusive education setting with the use of literacy groups/rotations. https://events.genndi.com/channel/ROWjune20
Can’t join in on the day?
Did you know you can view all DSQ webinars on our Youtube channel after the event? Webinars are uploaded so you can access whenever you are unable to attend the live webinar or need to revisit a topic! Click here to view.
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Books to Educate Siblings – An article by Regional Representative Amanda Sarchet
When we found out that we were having a baby with Down syndrome we didn’t want to confuse our boys with too much information of what may or may not develop. We were having a baby girl and they were gaining a baby sister. We did agree though that we should educate them about Down syndrome and the journey we were about to go on. So, I went searching for some picture books that were written in child friendly language and easy to understand to help me out.
My favourite book is ‘47 Strings Tessa’s Special Code’ written by Becky Carey. The author has written this book as a love letter to her son about her real-life daughter, Tessa, who has Down syndrome. It is a beautiful story that explains in a simple and sensitive manner how Tessa’s ‘special code’ makes her different in some ways but also how Tessa and her brother are the same in so many other ways. Additional information about Down syndrome can also be found at the back of the book.
Another nice and optimistic book is, ‘We’ll Paint the Octopus Red’ by Stephanie Stuve-Bodeen. It tells the story of Emma who is excited about the arrival of her new brother and what they can do together. Then she finds out he has Down syndrome. She worries they won’t be able to do the things she had planned but her Dad explains that, with a little help and patience, they will be able to do everything with the baby. At the back of the book there is also a sensitive and informative question and answer section.
Another great book is ‘My Sister, Alicia May’ by Nancy Tupper Ling. It is a beautiful and realistic presentation of the love between two sisters. The story is narrated by Alicia’s big sister, explaining how her sister, who has Down syndrome, is different but those differences are what make her special.
These books are not only a great way to educate siblings about Down syndrome, but also other family members, friends and school children. All three books can be purchased from online stores such as Amazon, Booktopia or Book Depository. They are also available to be borrowed from the DSQ Library.
Moving out – Written by Ruth Faragher
“My name is Ruth Faragher I started moving out to make my own share house with friends I enjoy being independent I get to make my own life. I have a full time job at Petit early learning journey childcare at Hamilton. I am sharing my house with my friend Ariane. It is good to have Down syndrome sharing the house with a friend it is a big responsibility for me to move out learning to cook, doing cleaning. In my free time I do colouring in mandalas and listening to music. I have been living in my share house for a few months and I had a World Down Syndrome Day party on 21 March.”
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26 May Family Catch Up - Housing
4 June Positive Behaviour Supports Webinar
17 June DSQ Housing Information Session 2
18 June ROW webinar
+ Daily Lunch Club
+ Weekly DSQ Club and Teens events
For more details and how to register for all DSQ events click here!
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To become a member of our wonderful organisation free please Click Here
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