News
For many families in Australia, access to appropriate childcare for children with profound disability is virtually impossible, but a new pilot program launching this month is looking to close the gap.
It is called the RippleAbility Respite Program, an initiative run by the RippleAbility paediatric service which helps carers and participants identity both informal and formal support networks as they navigate the NDIS.
The RippleAbility Respite Program is proposed to provide tailored care for children with complex needs, while also offering some much-needed support for their siblings and carers.
CEO of CareCorner, Barbara Goodwin, says her experience of caregiving began when her six-and-a-half-year-old son Winston was diagnosed with severe disability.
“He was born with a brain malformation resulted in…various neurological conditions. He’s got seizures, respiratory difficulties, chronic lung disease. He is non-mobile and non-verbal…But I kind of like to focus on what can he do. He’s got a very cheeky personality.”
Ms Goodwin says she found her son’s transition into the education system to be more intense than any medical experience she had encountered in his short life.
I found the transition to school harder because he had never been out of care outside of home, and I think he missed out on that at the start. For us it was a decision where we said we wouldn't have gone anyway just because we were still finding our feet and things were very uncertain.
Barbara Goodwin
According to the Australian Bureau of Statistics, over 567,000 children under five live with severe or profound disability, while the Department of Education reports that the average Australian family uses around 28 hours of subsidised childcare each week, yet no existing service is equipped to support their complex needs.
RippleAbility argue that parents and caregivers occupying full-time caregiving roles receive little to no relief, often at the cost of their own wellbeing and identity.
Clinical psychologist, Michelle Olaithe, explains that many parents can often withdraw from social networks, social or work activities to fulfil the role of full-time caregiver.
It ends up being more financial burden…a higher divorce rate. They have poorer mental health in general and suffer from carer burnout.
Michelle Olaithe
According to RippleAbility, families of children living with disability are primarily supported by the National Disability Insurance Scheme (NDIS). However, these budgets are reserved for critical therapeutic interventions and equipment, not child care opportunities, according to a data report released by the Department of Education.
Dr Olaithe argues that although there are companies who are providing respite or providing care, there are limited places that are readily equipped for children with profound disabilities.
“The kids that we're particularly interested in supporting need a high amount of medical care. particularly in that zero to five age range. There are just no childcare [places] that are suitable.”
Founder and Director of RippleAbility, Monique Power, agrees, claiming mainstream early childhood and education care centres are not designed to provide the unique support children living with profound disability need.
While centres which provide some specialised care do exist, we often hear they are at capacity or unable to accommodate the care ratios, staffing qualifications, and equipment specifications.
Monique Power
Ms Power says the launch of the new program marks a significant step towards bridging the gap between support for parents of children with profound disability.
Following further trials and reviews, it is hoped that the program can act as a demonstrated, successful model for centres across Australia to emulate, and drive change within the paediatric disability sector.
“It is our hope that, with the success of the pilot, we can demonstrate the tangible impact respite programs like this will have for these families, and see the rollout of support like this nationwide,” Ms Power states.
The RippleAbility Respite Program was launched in Perth on Saturday.
If you would like to know more about the program, click here.