Cries of care worn answered
From Health cover first nationally co-ordinated initiative to support parents at a grass-roots level. The MyTime groups are also more structured than many existing groups; each has a facilitator, who, along with organisational duties, works to break the ice and help parents who may be a bit shy to feel more comfortable. Facilitators also discuss evidence-based information and help link parents in with other services already in their area that they may not be aware of.
The groups also have a ‘‘ play helper’’ who organises activities for the children while the parents are meeting, allowing carers a muchneeded break, according to Day, who facilitates one group in Melbourne and attends another as well.
There’s little doubt that such support is beneficial, says Professor Gwynnyth Llewellyn, dean of the faculty of health sciences at the University of Sydney.
‘‘ There’s a natural human desire to share and to listen, and we know from the research that it’s empowering, and that people who have access to good social support are healthier, both mentally and physically,’’ Llewellyn says.
‘‘ What is new is that the federal Government is contributing a significant amount of money to make sure these groups are sustainable.’’
Often support groups fizzle out when the key organisers run out of energy, or no longer feel they need as much support themselves. Many groups also rely on ‘‘ soft funding’’ from grants that need to be regularly reapplied for, so they are vulnerable to dying off, Llewellyn says.
Difficulty in accessing support in the early years reflects a wider shortage in supported early intervention services in general, says doctor Tim Moore, senior research fellow at the Centre for Community and Child Health at the Royal Children’s Hospital in Melbourne.
Once a child is diagnosed with a disability they are eligible to access a range of services, including assessment by a multidisciplinary team that can include social workers, psychologists, occupational therapists and special educators, among others.
They can help place a child in school, develop action plans, help parents learn appropriate skills — and they also run support groups. Most of those services are run by small non-government agencies, and at the moment they aren’t able to sustain demand.
‘‘ There are hundreds of children on waiting lists in Victoria — often they may be waiting for 12 to 18 months to access services — the number of places funded is about 20 per cent less than the number of children who need those services,’’ Moore says. Similar trends are evident across Australia.
‘‘ We want to diagnose kids earlier, but then we haven’t got the resources to support them so we’re leaving families trying to manage on their own.’’
Moore and Llewellyn say the MyTime groups are an important step that shouldn’t be diminished or underestimated — but just how far the funding will go toward addressing the gaps in support isn’t clear. Both say better planning and consultation with key researchers and groups could have made the funding even more relevant.
Among their concerns is the lack of ongoing support available as children grow older and hit various transitional phases in their lives, such as entering primary school and high school, and leaving school.
‘‘ The major thrust of service delivery is aimed at families with young children, but parents need support even more as their children get older,’’ Llewellyn says.
‘‘ That’s when you see greater differences between them and other children, and the pressures increase as parents have to continually adapt. Very few parents relinquish their children in the early years, but there is a marked increase in parents placing child out of home as the child reaches eight or nine.’’
Yet there’s ‘‘ a major drop off’’ in services and support as children reach school age.
Several stories illustrating the impact of that drop-off are cited in the letter by the Australian Association for Families of Children with Disabilities, but there is also the story of distressed parents who ‘‘ have been urged by medical practitioners to maximise their child’s life chances by immediately seeking early intervention support services’’ — only to be told their three-year-old faces a 12-month wait.
To that end AAFCD chief executive officer Michael Gourlay says that while lots of areas are in need of more funding, early intervention support programs are no less deserving.
‘‘ There’s an urgent need for peer support during the early years — it’s money well spent,’’ he says.