Updated on November 11, 2024
Down syndrome is a genetic condition caused by an extra copy of chromosome 21 that impacts physical and intellectual development. Around 265 Australian babies were born with Down syndrome between 2016-2020. This means that approximately 1 in every 1,158 babies are born with the condition, highlighting the need for extensive support.
Support Services Available for Down Syndrome in Australia
These services focus on early intervention, education, healthcare, and ongoing family support. Let’s spotlight a few:
1. Early Childhood Early Intervention (ECEI)
The National Disability Insurance Scheme (NDIS) supports early childhood early intervention (ECEI). The early childhood approach supports children under the age of 9 with developmental delays or disabilities, as well as their families. This approach ensures that young children, even without a formal diagnosis, can access necessary support if developmental concerns arise. If parents or guardians need this support, they can contact an ECEI partner as a first point of contact. If there is no ECEI partner in the area, the NDIS can connect the family with support.
2. Education and School Support
Education and school support is another way to support children living with Down syndrome. Australia has adopted inclusive education policies that promote the integration of children with Down syndrome into mainstream schools, with adjustments made to accommodate their unique learning needs. Many schools have support units or special education staff dedicated to creating individualized learning plans.
For example, the Down Syndrome Victoria initiative advocates for inclusive and equitable education for all students, including those with Down syndrome. Their Education Program assists Victorian schools in reasonably adjusting the Victorian curriculum, enabling students with Down syndrome to learn alongside their peers in mainstream classrooms. The program offers a variety of services to support teachers, schools, and parents, such as:
- Educational professional development
- Parent webinars
- Biennial education conference
- Provision of education resources
- Phone and email consultations
3. Healthcare and Therapy Services
Access to quality healthcare is a necessity for people with Down syndrome, who often have associated medical conditions. Healthcare services include regular health assessments and specialized support from paediatricians, cardiologists, and other medical professionals.
The NDIS also provides funding for therapy services such as physiotherapy, occupational therapy, and speech-language therapy, which are crucial for managing developmental and health challenges.
Across Australia, numerous research initiatives are dedicated to improving healthcare for individuals with Down syndrome. Institutions such as the Telethon Kids Institute and the University of Queensland Down Syndrome Research Group are leading the way in groundbreaking research that addresses critical health issues.
Down Syndrome Australia offers a variety of digital tools and programs to support individuals with Down syndrome and their families.
- Down Syndrome Good Health App: This free app promotes a healthy lifestyle for individuals with Down syndrome.
- Down Syndrome Health Record App: This app assists parents and caregivers in tracking and monitoring the health, growth, and development of children with Down syndrome.
- Down Syndrome Australia Health Ambassador Program: This program empowers individuals with Down syndrome to advocate for their healthcare needs and educate healthcare providers on inclusive practices.
4. Family Support and Counseling
Down Syndrome Australia and various regional support networks offer resources, workshops, and peer support groups to empower families. These organizations help families stay informed about their child’s needs, share experiences, and build a support community. Counselling services are also available to assist parents and caregivers in managing stress and finding balance in their caregiving roles.
5. NDIS and Financial Support
The National Disability Insurance Scheme (NDIS) offers individualized plans that cover the cost of various therapies, assistive technologies, and personal care support. Additionally, families may receive financial assistance through other government programs, such as the Carer Allowance or the Health Care Card, which ease the financial burden associated with long-term care.
However, people with Down syndrome aged nine and above are not automatically eligible for the NDIS. To apply for the scheme, they must submit an access request form and provide supporting documentation to demonstrate their eligibility. You can contact NDIS- Down Syndrome Australia for more information.
Support Services Available Internationally
1. United States
There are four primary national Down syndrome organizations in the United States: the Global Down Syndrome Foundation, the National Down Syndrome Congress, the National Down Syndrome Society, and Down Syndrome Affiliates in Action.
The National Down Syndrome Society (NDSS) is a leading advocacy group that provides educational resources, promotes awareness, and champions the rights of people with Down syndrome.
2. United Kingdom
The United Kingdom has an extensive network of support services provided by organizations like Down’s Syndrome United Kingdom (DSUK). The National Health Service (NHS) provides healthcare support, including specialized clinics and access to various therapies. The UK emphasizes inclusive schooling in education, with provisions to support children in both mainstream and special education settings. Family support groups and online resources further support families in understanding and managing the challenges of raising a child with Down syndrome.
3. European Union
Across the European Union, Down syndrome support services are sustained by regional advocacy organizations like Down Syndrome International (DSi) and the European Down Syndrome Association. Specialized healthcare services and early intervention programs are widely available in countries such as France and Germany. Europe also hosts annual conferences and awareness campaigns to promote inclusivity and share research findings.
Sources:
- https://www.healthdirect.gov.au/partners/down-syndrome-australia
- https://www.downsyndrome.org.au/about-down-syndrome/statistics/
- https://www.healthdirect.gov.au/partners/down-syndrome-australia#:~:text=Down%20Syndrome%20Australia’s%20Federation%20offers,both%20in%20person%20and%20online.
- https://www.downsyndrome.org.au/
- https://www.missionaustralia.com.au/servicedirectory/187-ndis/ndis-early-childhood-early-intervention-south-east-tas1
- https://www.ndis.gov.au/understanding/families-and-carers/early-childhood-approach-children-younger-9
- https://www.downsyndrome.org.au/vic/services-and-supports/education-support/
- https://www.betterhealth.vic.gov.au/health/servicesandsupport/down-syndrome-and-family-support
- https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/down-syndrome
- https://focuscare.com.au/blog/what-ndis-support-is-available-for-people-with-down-syndrome
- https://www.globaldownsyndrome.org/about-down-syndrome/resources/national-down-syndrome-organizations-2/
- https://ds-int.org/
- https://downsyndromeuk.co.uk/
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