Now and the Future Podcasts

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Now and the Future Podcasts

The Now and the Future podcast is an exciting way of exploring stories, opportunities and current issues as shared by people with Down syndrome and their support networks.  

Throughout this series, we will meet a range of people and provide practical advice to empower people with Down syndrome now and into the future.

With new episodes released regularly, this podcast is essential listening for anyone with links to the Down syndrome community.

About this podcast series

Season Four

Episode One

Common Barriers to Inclusion

What are the barriers to inclusion? What barriers do students face, as well as educators? Which barriers are due to mindset and classroom culture, leadership and pedagogy, or other environmental factors? Are barriers something that can be overcome or do some barriers need to be accepted and just worked with?

These are the sorts of questions that the DSQ Education Team delve into and explore, as they tackle the tricky theme of barriers to inclusion in a classroom.

This podcast attempts to provoke thought, professional dialogue and pedagogical reflection, as each barrier is unpacked and discussed by our team.

This podcast is a production of Down Syndrome Queensland. If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au. 

Episode Two

Mosaic Down Syndrome

Around 1–2 % of people with Down syndrome have mosaic Down syndrome, which means only around 120–240 people in Australia live with this rare type of Down syndrome.

Mosaicism occurs when a person has two or more genetically different sets of cells in their body. People with the more common form of Down syndrome, Trisomy 21, have 3 copies of the additional 21st chromosome in each cell.

However, people with mosaic Down syndrome have some cells with an additional 21st chromosome, while other cells have two copies rather than three. Mosaicism occurs when the chromosomal variation occurs after fertilization. As with Trisomy 21, people with mosaic Down syndrome are all unique individuals with a range of strengths and interests. Some though not all people with mosaic Down syndrome have fewer of the physical features that can be associated with Down syndrome, but most children will experience delays in meeting developmental milestones.

Whilst some people with mosaic Down syndrome may experience less of the developmental and physical impacts of Trisomy 21, other people with mosaic Down syndrome will experience many of these. The degree of impact will depend upon a range of other factors, including the level of mosaicism.

In this episode, we will hear from a range of people about mosaic Down syndrome, including a person with the condition, and a couple of parents who discuss their journey to diagnosis. Click on the links for further information: https://www.imdsa.org/ (International Mosaic Down Syndrome Association)

This podcast is a production of Down Syndrome Queensland. If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au. 

Episode Three

Latch On

Latch On is delivered by Down Syndrome Queensland and aims to change the lives of young adults with intellectual disabilities, through its evidence-based literacy program.

This two-year program is developed by the University of Queensland and delivered by DSQ to provide students opportunities to increase their literacy and communication skills.

In this episode, we will hear from Dr Anne Jobling, who led the research into and the development of Latch On when it was first created and is still part of the program through the University of Queensland. We also hear from Latch On teacher, Janet Reed who talks to us about the Toowoomba Latch On class and gives us an idea of what a normal day at Latch On looks like. We will also hear from current student sand how they are benefiting from the program.

For more information on DSQ’s Programs and how you can become involved, please contact Teagan on (07) 3356 6655 or email tcossor@downsyndromeqld.org.au

This podcast is a production of Down Syndrome Queensland. If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au.

Episode Four

Prenatal Screening

Down Syndrome Queensland understands that access to prenatal screening and diagnosis is important for many families. We respect the right of women to undertake prenatal testing, if they choose to do so, and to make decisions about whether or not to continue a pregnancy based on their own circumstances and beliefs.

Research suggests that currently, many families may not be making fully informed choices about prenatal testing. We are concerned that some families may be making decisions that are based on negative community attitudes and inaccurate, outdated information about Down syndrome.

Non-invasive prenatal screening marketing material often focuses on the relief and reassurance that prenatal screening can offer, but there is very little out there about the 2–3% of unexpected results that might raise more questions than answers. There may be misinformation, or worse still, silence, about screened-for conditions. For more and more prospective parents this isn’t a hypothetical question, as technologies such as non-invasive prenatal screening become more widely used.

Through our work supporting families through prenatal screening and diagnosis, we often hear stories of misinformation about life with Down syndrome and an assumption that following a diagnosis, prospective parents would choose termination. We also hear stories of choices not being supported or respected; and frequently, families have to stumble upon support services themselves rather than being referred to them as part of ongoing care during the remainder of their pregnancies.

Down Syndrome Queensland, in partnership with the Department of Health, has been funded to deliver a project which will improve the training and education available to healthcare professionals, to enable access to accurate and balanced information at the time patients are considering prenatal screening. This much-needed project supports health care professionals offering pre-natal care and navigating prenatal screening technology.

It’s an area that can be divisive; it can be hard to talk about and difficult to think about. While pre-natal screening technology can give us a chromosome count, when prospective parents ask ‘what does that mean for my child?’ often the answer is far less clear.

This project brings together critical clinical knowledge with the lived experiences of people with chromosomal conditions such as Down syndrome. Prospective parents making decisions about the future of a wanted pregnancy need accurate and balanced information, the right support and time; it’s hard to imagine a more high stakes scenario. In this episode, we will hear from a number of people with lived and professional experience in the area of prenatal screening.

From today, prospective parents and healthcare professionals can now access up to date, evidence-based and balanced information on one reputable website. This site brings together a range of written resources and videos, along with clinical training options, so that the prenatal screening journey can be one that is informed, supported and respectful of patient experiences and choices.

Visit the Prenatal Screening website for all the information: https://prenatalscreening.org.au/

This podcast is a production of Down Syndrome Queensland. If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au.

Season Three

Episode One

Co-Occuring Diagnoses

Welcome to Season 3 of the Now and the Future Podcast brought to you by Down Syndrome Queensland!

Whilst it is commonly known that people with Down syndrome can be more likely to experience a range of possible health conditions, sometimes other non-medical diagnoses are subsequently made.

Research is now suggesting that people with Down syndrome can meet diagnostic criteria for conditions such as Autism Spectrum Disorder, and Attention Deficit Hyperactivity Disorder, at higher rates than seen in people without Down syndrome.

In the past, this has commonly been referred to as ‘dual diagnosis’, however this term is no longer used as it can imply different meanings in other fields. The terms ‘co-occurring’ or‘ additional’ diagnosis are now preferred, and paired with the relevant condition e.g. Down syndrome and Autism Spectrum Disorder (DS + ASD); Down syndrome and Attention Deficit Hyperactivity Disorder (DS + ADHD).

This episode will feature conversations with several parents whose children have subsequently received additional diagnoses.

They explore what this has meant for their families and how it flows on to other settings, such as school or in the community.

DSQ has previously recorded two webinars on the topic of Down syndrome + ASD; you can view these at the following links:

View the webinar with Griffith University’s Autism Centre of Excellence (16.02.2021).

View the webinar with Dr Honey Huessler on navigating the diagnosis process (July 2021)

Down Syndrome Australia also has a fact sheet on Down syndrome and Autism which you can view here.

The DSMIG (Down Syndrome Medical Interest Group) DS-ASD Workgroup and partner Autism Speaks collaborated to create a new resource for Down syndrome-autism spectrum disorder (DS-ASD).

On the new DS-ASD page, you can read more about co-occurring Down syndrome and ASD, learn how autism presents differently in people with Down syndrome and access resources to further your education on this diagnosis.

Now And The Future is a production of Down Syndrome Queensland.

If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Two

Siblings

This episode showcases the bond between, and unique perspectives regarding, having a sibling with Down syndrome.

We will discuss what this role has brought to the lives of the two siblings interviewed, Bekki and Laurel. 

You can read more about the sibling experience in the April 2021 issue of Down Syndrome Australia’s Voice magazine. 

Other helpful resources include:

Siblings Australia is an organisation committed to promoting better support for siblings of children and adults with disability. You can find out more at the Siblings Australia website.

It was founded by Kate Strohm, author of the book ‘Siblings’, which can be borrowed from DSQ’s library. 

In the ‘Our Stories’ section of the Down Syndrome Australia website, you can read about other families’ experiences when supporting their children to understand more about their brother or sister’s diagnosis.

Read the story about Owen and his sisters here.

The support services team at DSQ can assist with recommendations of a range of books to help siblings to understand more about Down syndrome.

In addition, the team are happy to discuss any questions you may have about family dynamics; and we are here to listen to and support siblings of all ages to adjust and understand.

Now And The Future is a production of Down Syndrome Queensland.

If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Three

Get Active: Coaching Tips & Programs

Get Active is a program offered by Down Syndrome Queensland to help community sporting clubs and coaches enhance their capabilities to provide inclusive sporting and recreational opportunities for people with Down syndrome and other intellectual disability. 

The Get Active program is funded by the Australian Government through the Driving Social Inclusion through Sport and Physical Activity Grant Program.

Get Active is formed on its pillars of success: Education, Resources, Advocacy, Social and Community Connections. 

We are here to raise awareness and provide opportunities for all.

We have teamed up with an incredible program called Unified Sports and today we have Kym Lawley with us to explain exactly what this is and how your son or daughter, friend, cousin or neighbour can get involved.

In this episode we hear from Programs Coordinator, Liz Willis and State Sporting Manager from Special Olympics Australia Kim Lawley, to discuss the exciting unified basketball competitions being offered in Queensland.

Then we welcome two more of our Ambassadors Martin Smith and Tim Gould for some coaching tips and insights into their Get Active Ambassador lives and let them share with us their messages for inclusion and coaching people with Down syndrome.

For more information on DSQ’s Programs and how you can become involved, please contact Liz on (07) 3356 6655 or email getactive@downsyndromeqld.org.a

Now And The Future is a production of Down Syndrome Queensland.

If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Four

In Conversation With Education Consultants

School inclusion is not simply placing a student with a disability into a mainstream class and hoping for the best. 

It is an approach, a belief, and a human right for all students with Down syndrome to be included in their local school, and requires thoughtful considerations, adjustments and support for success. 

In this episode, listen to our Down Syndrome Queensland Education Consulting Team as they share their experiences about how they became involved in inclusive education, how inclusion is beneficial for all students, and the benefits for educators involved within inclusive schools.

Now And The Future is a production of Down Syndrome Queensland.

If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Five

Disability Royal Commission

In this episode of the Now and the Future Podcast we sit down with Rikki and Linda from the Disability Royal Commission Advocacy team at Speaking Up For You (SUFY).

We’ll discuss their role in the Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

We will learn about the Disability Royal Commission, how SUFY works to help you make a submission, what form your submission can take and what you should think about before you make a submission.

If you would like to know more about the Disability Royal Commission you can visit their website.

If you would prefer an easy read resource to learn about the Disability Royal Commission, you can find one here.

If you think you would like to make a private submission to the Disability Royal Commission, you will need to request a private session by the 30th of June 2022. You can do this here or by calling 1800 517 199.

You will need to register by this date even if you think you might change your mind later which is completely OK.

If you would like to make a submission to the Disability Royal Commission you will need to do this by the 31st of December 2022.

You can find out more about this by clicking this link.

If you would like SUFY to help you make a submission to the Disability Royal Commission, or if you would like information on who can help you make a submission, please contact them on (07) 3255 1244 or by email on sufy@sufy.org.au

Alternatively, you can also visit the SUFY website

This podcast is a production of Down Syndrome Queensland.

If you have a question, would like more information on any of our episodes, or have suggestions for future topics, send us an email – engagement@downsyndrome.qld.org.au.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Season Two

Episode One

Calling all carers!

Identifying as a carer is not always something that comes naturally to families who support a loved one with a disability.

The line between what we see as the role of family and what are added or unique responsibilities when a family member has a disability can be very fluid and can also change over time.

In this episode, we unpack this further with Kirsten and Claire from Carers Queensland and explore the various options for support, including for siblings and young carers. 

If you would like to contact Kirsten or Claire for more information or support, please call 1300 747 636 or head to the Carers Queensland website.

Now And The Future is a production of Down Syndrome Queensland.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Two

Social Programs

In this episode of the ‘Now and the Future’ Podcast, we talk to Teagan from Down Syndrome Queensland about the range of Social Programs offered for adults, teenagers and children to develop social skills and make new friends.  

You may have heard about DSQ Club, DSQ Teens, DSQ Kids, Challenge Weekend or DSQ’s New Years Eve Ball; this episode is all about these programs. 

Why they are important, who they are aimed at and some of the outcomes for regular participants. 

We hear from Eoin and Kirrin about their experiences and also a parent who explains the personal growth she has seen in her daughter from participating in the programs.

For more information on DSQ’s Programs and how you can become involved, please contact Teagan on (07) 3356 6655 or email seniorcoord@downsyndromeqld.org.au

Now And The Future is a production of Down Syndrome Queensland.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Three

Wills and Estates

This week the Now and the Future podcast talks about Wills and Estates with Dion McCurdy, Principal of Direct Lawyers.  

With over eight years of experience specialising in Wills and Estates, Dion provides fantastic insight and advice to ensure your affairs are in the correct order for the future. 

A not to be missed episode for anyone with a child with an intellectual disability.

Now And The Future is a production of Down Syndrome Queensland.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Four

Health Ambassadors

This week the Now and the Future podcast talks about Health Ambassadors and their mission to make health care workers better understand people with Down syndrome.

Now And The Future is a production of Down Syndrome Queensland.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Episode Five

Diving Into Diet and Nutrition

In this episode of Now and the Future Podcast, we will be exploring the importance of nutrition for those who experience co-occurring health conditions or allergies.

The role and importance of nutrition will look different across the lifespan; from those difficulties with establishing newborn feeding through to the impact of conditions in adulthood such as diabetes or thyroid concerns, it is vital to ensure that any person with Down syndrome has their nutrition needs reviewed regularly. 

We’ll be chatting with Matt Hart, Accredited Practicing Dietitian and Sports Dietitian, and founder of Hart Nutrition; and DSQ’s Community Engagement Officer, Gillian Gehrke, around her lived experience of the way in which Mosaic Down syndrome has impacted her in this area.

If you’re interested in connecting with Matt following this episode, feel free to contact him on 0400 961 870 or via email matt@hartnutrition.com.au

Now And The Future is a production of Down Syndrome Queensland.

For more information please visit the DSQ website, or follow us on Facebook and Instagram.

Season One

Episode One

Get Active

Get Active is a Social inclusion program and accompanying resource kit, offered by Down Syndrome Queensland to sporting communities across the state. The program educates local sport and physical activity providers (clubs, coaches and volunteers) to increase their capability to deliver accessible, inclusive programs that meet the needs of people with Down syndrome and other intellectual disabilities.

In this episode, we hear from Get Active’s Program Coordinator, Liz Willis, about what the program aims to achieve and how it can support clubs, coaches and families to improve sporting participation rates in local areas. The episode also features Get Active Athlete Ambassador Ethan Parry, and Get Active Coach Ambassador Stix (Daniel) McGavin, as they encourage and inspire others to aim for inclusion. Ethan’s mother, Gail Parry, also shares her perspective on Ethan’s athletics pursuits. 

GetActive is funded by the Federal Department of Health under the Driving Social Inclusion through Sport and Physical Activity Program. If you would like to learn more about Get Active, or contact Liz for assistance, head to https://getactive.net.au/

Episode Two

Peer Support

The Peer Support Network is a volunteer program facilitated by Down Syndrome Queensland (DSQ). Peer Supporters are parents and close family members of people with Down syndrome, as well as people with Down syndrome, across Queensland who want to offer support in their local community.  

This program is expanding and gaining momentum. Peer support as a model is growing in popularity across many sectors and areas, as a valuable intervention. Peers can offer unique and useful support by virtue of having lived experience.  

In this episode, DSQ’s Peer Support Officer Christina Ranck chats with Early Years Officer Tanya McConnell about the value of the Peer Support Network and what it is providing DSQ members across the state. We also hear from a range of Peer Supporters about what they get out of this role, and what they have been able to contribute to the community.  

DSQ’s Peer Support program is funded by the Department of Social Security’s Information, Linkages and Capacity Building Program. For further information please contact the Peer Support Officer on (07) 3356 6655 or email peersupport@downsyndromeqld.org.au 

Episode Three

Safeguarding and Setting Boundaries

Statistically, people with a disability can be more vulnerable to abuse; and this can be very confronting to process. However, there are strategies that can be used when assisting others to learn about respectful relationships and maintaining boundaries. Join DSQ’s Support Services team, and Peer Leader Niky, to hear about starting the conversation early with regards to teaching about safeguarding and setting boundaries.  

Episode Four

4 Things to Know When Teaching a Student with Down Syndrome

Join DSQ Education Consultant Joelle as she shares some points to consider when a student with Down syndrome enrolls in school. Learn about equitable loading, risk-taking and mistake-making, breaking down stereotypes and development progression. Joelle aims to provide educators with some basic understanding about students with Down syndrome to support schools to become inclusive learning environments. 

Episode Five

Capacity Building in the Classroom

In the final episode for Season 1 of the ‘Now and the Future’ Podcast, we talk to teachers and students from two of Down Syndrome Queensland’s (DSQ) programs, Latch-On and Continued Education Program (CEP), and how these holistic education programs which include components of real-world experience, develop confidence, independence and employment opportunities.