|What We Do|
What do we do?
We run family and community programs which enable us to support people with Down syndrome and their families.
Family Support Program
Drop in Centre
Our Down Syndrome WA drop in centre and office is located in South Perth and is used for families wishing to casually drop in and also for more organised support groups, morning teas, meetings and information sessions. The drop in centre is open 5 days/week between 9.30am and 2.30pm. Phone messages and emails are checked regularly.
Down Syndrome Helpline
Our Helpline is staffed at the drop in centre five days a week, providing information, advice and support as required. The Executive Officer and Family Support Worker are on call outside business hours for urgent calls.
Family Support Worker
Our Family Support Worker is available to help families with issues and concerns two days a week in the drop in centre and is on call on the other three days for urgent matters. As well as listening, she assists in providing practical support and acting as an advocate for the family.
Hospital Visiting Team
The Association has a team of trained and experienced volunteer parents ready to visit new families who have a newly diagnosed baby and offering much needed support and information to help them come to terms with the diagnosis. A visit can be made to the hospital or later on at home.
New Parent Support Folder
The Association offers new families a folder of current, positive information on Down syndrome and simple, practical advice for the first few months to help them care for their new baby. Folders contain personal stories shared by other parents, to let new families know they are not alone. They also include details of support services within the community, recommended reading and a list of resources from our parent collection. Support Folders are given free to parents and at a cost to hospitals and professionals. Click here to view an electronic version of the folder.
Our Family Support Worker organises regular support group meetings for new parents to help them meet and form networks with other families, and to facilitate the sharing of useful information. These meetings are held at the Down Syndrome WA centre so that new parents feel welcome and can get to know the staff and the supports available. Local Contact parents organise coffee mornings from time to time in local areas to give people a chance to network in their own area. A Special Interest support group (e.g. on education, recreation or any area of interest) can be set up at any time there is a need.
Information Sessions and Parent Seminars
Information Sessions and Parent Seminars are held from time to time on a wide range of topics as needed by members. Topics can range from the health and medical implications of Down syndrome to Wills and Future Planning.
A bi-monthly newsletter is mailed out to members and contains news of coming events and articles relating to Down syndrome to inform and uplift.
Down Syndrome WA has an excellent collection of books, Videos, DVDs and other resources on Down syndrome, available for parents, siblings and other members to borrow from our library.
A number of social events and regular recreational activities are held each year to bring children and adults with Down syndrome and their families together informally, to facilitate the formation and maintenance of support networks and friendships. These include picnics, socials, dinners, Christmas party, ten-pin bowling groups, karate sessions and occasionally, family camps.
Aim High Club
During 2007 and 2008, Down Syndrome WA ran a pilot life skills and social program for young adults with Down syndrome. The Club will continue as an ongoing social group in 2009 and a second group of young adults will be able to participate in the life skills and social program. Continuation beyond 2009 will depend on finding successful sponsorship.
Rural, Regional and Isolated Support
A 1800 phone number is available for country callers. New Parent Support Folders are sent to country families with new babies and networks are set up with other local families where possible. In some areas support groups are run by volunteer parents. Information seminars and workshops are held in regional centres from time to time.
The Association has represented the needs, opinions and wishes of its members in submissions to various bodies over the years and advocates for individuals and families as required.
Down Syndrome WA seeks to create more positive awareness in the community about the rights, needs and abilities of people with Down syndrome, and to develop the skills, knowledge and understanding of people who work with individuals with Down syndrome and their families. This leads to greater acceptance and works hand in hand with family support to enable better lives for people with Down syndrome and their families.
Down Syndrome Awareness Week - October
A variety of activities and events are held each year to mark this National awareness week, and media coverage is sought from TV, Radio and newspapers. A 'Dress Up for Down Syndrome' Day is held in schools and workplaces during the week to raise funds. In 2008 Down Syndrome WA joined other Down Syndrome groups across Australia and around the World in holding a Buddy Walk to promote acceptance and inclusion and to raise funds.
Kits containing posters, brochures, booklets and other information produced by the Association are sent to schools and libraries on request so displays can be set up.
Beautiful photographic calendars featuring children with Down syndrome are produced each year and launched during Awareness Week.
'Beyond the Myths' Photographic Exhibition
The Photographic Exhibition 'Beyond the Myths' by Mona Neumann was exhibited from January to May 1997 at the W.A. History Museum and has been acclaimed worldwide. Check out our "Beyond the Myths" photos.
Comprehensive information about Down Syndrome and Down Syndrome WA activities are available on our website. Click here to view our Information Packs in the Library, Resources and Links section or check out social events or this year's calendar of events.
A range of information packages and professional resources for students, teaching staff, child care workers and health professionals have been produced and are in great demand.
Community Outreach - Training Consultancy
Training is provided to Teaching Staff, Support Workers, Child Care Staff, Student Groups and Hospital Staff. Every year over 100 teaching staff attend workshops on 'Educating the Student with Down syndrome'. These workshops are also held in regional areas when funds allow. School-based workshops and a trouble-shooting consultancy are both available on request. Training is offered to support staff in supported accommodation, employment, recreation, respite and Alternatives to employment services. Speakers can be arranged to speak to student groups and staff in schools, colleges, universities and hospitals.
Since 2004 Down Syndrome WA has worked closely with the Telethon Institute for Child Health Research on a population based study on Down syndrome throughout WA. This research is unique to WA and involved families with sons and daughters with Down syndrome between the ages of 0 - 25 years and is helping in the planning of health, therapy and other support services in the future. Down Syndrome WA is also at the forefront of consumer involvement in research. Click here to read more about our involvement in research.
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