Down Syndrome Australia resources
Community Inclusion Toolkit – Health Resources
Down Syndrome Australia have developed a Community Inclusion Toolkit which includes a section on Health. These resources have been developed to provide evidenced-based advice to health professionals to better understand how to support people with Down syndrome within the health system. Resources have also been developed for people with Down syndrome and their families to be prepared and informed about hospital stays, building relationships with GPs and decision making.
The Health resources are available here: Community Inclusion Toolkit – Health resources
The Ageing Guide provides information to adults with Down syndrome, their families, medical professionals and anyone involved in the health and wellbeing of someone with Down syndrome as they age.
An Easy Read version of our Ageing Guide is coming soon.
Down Syndrome State and Territory resources
Mental wellness and healthy living
An on-demand webinar now available from Down Syndrome NSW called "Promoting strengths and mental wellness in Adults with Down Syndrome: Lessons learned" from the Adult Down Syndrome Center, Chicago with Dennis McGuire.
Resources from other organisations
CHAP - the Comprehensive Health Assessment Program
CHAP enhances collaboration between a person with intellectual disability, their support or carer, and their GP, by provided a detailed health history. It is designed to minimise the barriers to healthcare and was developed by the Queensland Centre for Intellectual and Developmental Disability by Professor Nick Lennox. The program is used around Australia by state governments and non-government organisations such as Endeavour Foundation, and is being trialled by other countries.
Dental Care Guidance for Caregivers of Patients with Down Syndrome
Visit the Emergency Dentists blog for some helpful information on dental care specific to patients with Down syndrome.
The Down Syndrome NOW (Needs, Opinions, Wishes) Report
In 2004, researchers at the Telethon Institute for Child Health Research, led by Dr Helen Leonard, conducted an important population-based study on the health, needs and functioning of children and young people with Down syndrome.
A general report on the 2004 Down Syndrome Needs Opinions Wishes study Down Syndrome Needs Opinions Wishes Study Report, 2007 provides descriptions of medical conditions and functional abilities by age, as well as information on the family and utilisation of support services.
A summary booklet describing some of the studies emanating from these data, Understanding Down Syndrome: Capturing family experiences through research has also been collated.
My Health Matters – NSW Council for Intellectual Disability (NSWCID)
My Health Matters is an Easy Read folder for people with an intellectual disability. It helps people explain what is important to health professionals.
Talking End of Life is a online training toolkit that gives carers and practitioners the skills, knowledge, resources, confidence and comfort to help people with intellectual disability understand the end of life and make plans for it if they choose.
Ageing and Down Syndrome – A Health & Wellbeing Guidebook from National Down Syndrome Society (USA)
This guidebook includes information about medical conditions, emotional and psychiatric wellbeing, Alzheimer’s disease and old age. You can find the guidebook at the National Down Syndrome Society website.