Where to Find Information and Support for Down Syndrome in SA

We understand that accessing the right information is vital for families. That’s why we’ve created a list of trusted resources to help you learn more about Down syndrome, connect with services, and make informed decisions.

National and State Organisations

• Down Syndrome Australia
  The national peak body representing people with Down syndrome. Offers factsheets, advocacy tools, and family resources.
  www.downsyndrome.org.au

• Carers SA
  Offers local support for family carers including counselling, respite info, and peer support.
  www.carerssa.com.au

• Carer Gateway – Practical help and services for carers
  www.carergateway.gov.au

• Child and Youth Disability Services SA (CYDS)
  State-based supports and assessments for children with disability.
  www.sa.gov.au/topics/care-and-support

International Organisations

• Down Syndrome International
  A global network of people with Down syndrome and their families. 
  ds-int.org/
  
• Down Syndrome Education International (UK based)
  United Kingdom based education and information service.
  www.down-syndrome.org/en-gb/
  
• Down Syndrome Resource Foundation (Canada Based)
  A Canadian based service that provides educational programs, health services, information resources, and rich social connections
  www.dsrf.org/

• National Down Syndrome Society (USA base)
  NDSS is a United States of America organisation that empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions.
  ndss.org/

NDIS and Disability Support

• NDIS (National Disability Insurance Scheme)
  Learn how to access the NDIS, understand eligibility, and prepare for planning meetings.
  www.ndis.gov.au
  
• The Growing Space
  Independent, family-friendly NDIS information and coaching. Great for parents who want clear advice.
  www.thegrowingspace.com.au
  
• Disability Gateway
  Australian government portal connecting people with disability to services across health, education, transport, and employment.
  www.disabilitygateway.gov.au
  
• South Australia Council on Intellectual Disability
  SACID is the South Australian representative of Inclusion Australia. 
  www.sacis.org.au

Early Childhood Development and Therapy

• Raising Children Network
  Expert parenting advice with a dedicated section for parents of children with disability.
  www.raisingchildren.net.au

• Kindship
  A free social networking app for parents of children with disability. Great for peer connection and crowd-sourced tips.
  www.kindship.com.au

• First Steps for Families (SA)
  South Australian guide for families new to disability diagnosis and early childhood intervention.
  www.education.sa.gov.au > Search “First Steps Disability”

• CaFHS
  The Child and Family Health Service provides free support for all children from birth to 5 years, living in South Australia.
  www.cafhs.sa.gov.au

• Early Years SA App
  An application that provides families in South Australia with trusted resources and credible information to guide you on  your parenting journey.
  www.earlychildhood.sa.gov.au/for-parents-and-carers/early-years-sa-app

• Australian Breastfeeding Association, Breastfeeding your baby with Down Syndrome
  Information and support provided on on breastfeeding babies with Down syndrome.
  www.breastfeeding.asn.au/resources/breastfeeding-your-baby-down-syndrome

• Playgroups SA
  A non-profit, community organisation that connects mums, dads, grandparents and caregivers with playgroups for young children to help them develop, grow and have fun across South Australia.
  www.playgroupsa.com.au/

School and Learning Resources

• AllPlay Learn (Monash University)
  Free teacher resources to support inclusive education for children with disability.
  www.allplaylearn.org.au

• Positive Partnerships
  Offers workshops and online resources for families navigating school and behavioural support.
  www.positivepartnerships.com.au

• Booktopia or Able Books
  For purchasing disability-friendly children’s books and inclusive classroom stories.
  www.booktopia.com.au
  www.abebooks.com.au

• Key Word Sign Australia
  Provides resources and training on the Key Word Sign tools that  can be used to support children and adults with communication difficulties to understand and get their message across to others.
  kwsa.org.au/

• Two Way Street
  Adelaide company focusing on AAC communication and offers training to business’s and schools on using AAC/also support families on NDIS.
  twowaystreet.com.au/

Health and Wellbeing

• Better Health Channel (Victoria)
  General health and disability advice from a trusted Australian source.
  www.betterhealth.vic.gov.au

• Down Syndrome Clinic 2 U (DSC2U)
  USA based online tool to develop personalised medical plans to take to GP to discuss person with DS needs.
  www.dsc2u.org/

Teen and Adult Life

• Tell It Like It Is: Self-Advocacy Toolkit
  A practical guide for teenagers and adults with Down syndrome to express their choices, rights, and goals.
  www.downsyndrome.org.au/resources

• Our Site (by Women With Disabilities Australia)
  Resources and stories for young women with disability about relationships, rights, and safety.
  www.oursite.wwda.org.au

• Special Olympics Australia – SA
  Special Olympics Australia is part of a global movement using the power of sport to build a more inclusive world for people with intellectual disability and/or autism.
  www.specialolympics.com.au/find-a-sport-near-me/sa

• SHINE SA – Sexual Health Support
  South Australian sexual health support and information for people with disability.
  shinesa.org.au/community-information/disability-sexuality/

• Planet Puberty
  NSW developed resource to teach puberty and relationships to people with an ID and Autism.
  www.planetpuberty.org.au/

• eSaftey Commissioner, Community, People with Disability
  Resources to support education of being safe online.
  www.esafety.gov.au/communities/people-with-disability

Down Syndrome and Ageing

• Dementia Australia, Down syndrome and Alzheimer’s Disease
  Information and resources on Down syndrome and Alzheimer’s disease and the early warning signs of Alzheimer’s disease in people with Down syndrome.
  www.dementia.org.au/about-dementia/down-syndrome-and-alzheimers-disease

Recommended Books and Guides

• Babies with Down Syndrome: A New Parent’s Guide by Susan Skallerup
• Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives edited by Kathryn Soper
• Supporting Positive Behaviour in Children and Teens with Down Syndrome by David Stein
• Down Syndrome Parenting 101 by Natalie Hale
• The Down Syndrome Transition Handbook by Jo Ann Simons

Down Syndrome Transition Handbook – A guide for families preparing for adult life, employment, and independent living.