Bringing up children with special needs brings unique challenges for parents and siblings, with many families reporting feeling isolated and in need of more support. However experience has shown that one of the most useful things for these families is to hear stories from, or make contact with other families just like them.
According to an Australian Institute of Health and Welfare report, approximately, one in twelve children aged between 0-14 in Australia are affected by a disability and of these, half have a profound or severe disability.1 Of the co-resident parents caring for these children, about 1 in 2 (48%) reported needing more support, while 25% had reported that they had lost, or were losing touch, with friends.
A YouTube video produced by UK based charity ‘Contact a family’ features honest accounts of the parental experience of raising a disabled child. It is part of a four-part series covering:
One of the take-out messages from this series is that connecting and sharing experiences with others in a similar situation can be extremely helpful. ‘Contact a family’ doesn’t exist in Australia but similar organisations do:
- The raising children network provides a wealth of information on services and support for parents of disabled children, it also provides a video series on how to find help and support, parent reactions, family life, siblings. Visit www.raisingchildren.net.au
- MyTime groups provide facilitated peer support for mums, dads, grandparents and anyone caring for children with a disability, developmental delay or chronic medical condition. They have groups in every state, visit www.mytime.net.au
- s.p.a.c.e is a Brisbane-based community centre with a special interest in special needs. It’s a place where people connect with the community through innovative, spirited, and socially responsible services. www.thespace.org.au
- Melbourne-based Alkira provides services for people with intellectual disabilities, their families and carers through the provision of day programmes, residential support (respite/crisis and permanent supported accommodation), recreation and transport. Their mission is to meet the needs and wishes of people with intellectual disabilities through care and support to enrich and challenge them to be part of the world community. www.alkira.org.au
- Sydney-based Lifestart is a parent-led Early Childhood Intervention program for children with intellectual disabilities or delays. They have centres and playgroups all over Sydney, and also provide support for school-age children and their families. Go to www.lifestart.org.au
- Newcastle-based SNUG is a project that invites geographically isolated families who have a child with a severe disability to attend a five day residential camp in the Hunter area of NSW. The families are accomodated at Myuna Bay Recreational facility in Lake Macquarie near Newcastle and can access the Newcastle based specialist dental, neurological and other vital specialised medical care that is not available in rural communities. www.newcastle.edu.au/research-centre/fac/programs/snug/