Felicity Thompson bought just one thing for her newborn daughter: a tiny burial outfit.
Key Point:
Serious obstacles prevent disabled children from accessing childcare services, leading to calls for specialised centres, which Western Australian mother Felicity Thompson says would be “hugely beneficial”.
Nurses in Perth had been told the baby would probably die.
Then, 30 weeks into her pregnancy, doctors told her the baby would likely survive and diagnosed it with Russell Silver Syndrome.
Audrey, now two and a half years old, was born with dwarfism.
This means she struggles to gain weight, needs a feeding tube, has a compromised immune system and is behind on gross motor skills.
Felicity Thompson and her daughter Audrey. (ABC News: Lucy Martin)
Felicity tried to return to work, but the local nursery refused to accept Audrey.
“I always worked full time, even when I had four other children.
“I’ve always cherished that part of my life, and I can’t let her go [and] Just as I was about to return to work, she became very ill, so it has become a full-time job.”
I’ve been stuck at home for over two years.
When we see Felicity holding Audrey in her arms, we can see how much she loves her daughter.
But 24/7 caregiving is taking its toll, and Felicity is in desperate need of rest.
“I haven’t left the house without her in two and a half years,” she said.
Little Audrey Thompson was born with dwarfism. (ABC News: Lucy Martin)
“I just want to be able to go out, spend time with my friends and have five normal minutes to myself.”
“It may not sound like a big deal to a lot of people, but to me it would mean the world.
“In the 1960s, children like Audrey were hidden in institutions; now they’re just hidden at home.”
‘Huge’ barriers to accessing child care services
Under the Disability Discrimination Act 1992, everyone has a legal right to child care services.
The reality is that very few facilities have the staff or facilities to cater for children with special needs, so there is no need to make changes that would cause “undue hardship.”
Frustrated by her own experiences advocating for her daughter, Monique Power set up a company called Ripple Ability to help parents navigate the National Disability Insurance Scheme (NDIS).
Monique Power, founder of Ripple Ability, said childcare centers “discriminate against children with disabilities.” (ABC News: Lucy Martin)
She and her colleagues realized the extent of the problem when a young client’s funeral brought along many children, all of whom were unable to be placed in childcare.
Their research identified barriers to accessing child care services for children with disabilities.
“I know that daycare centers discriminate. [these] “The kids,” Power said.
Ripple Ability called dozens of childcare providers in Western Australia to find places for its clients.
“We received categorical refusals… Those who did not receive an outright refusal said they would call us back. [and] I never heard from them again,” she said.
The need for a dedicated center
Power believes a new model involving dedicated centres with flexible opening hours, facilities and medically trained staff and therapists is the answer.
“Your parents would know [their child] “I feel like I’m in a safe place and I can walk away with confidence,” she said.
“Children with complex needs don’t miraculously get better.
“But they will have the opportunity to make friends and build a social network with people who look and live similar lives to them, which can make a huge difference to their mental health in the long term.”
Ms Power believes having access to such centres can be life-changing for parents.
“It will give people the opportunity to get a higher education. [or] Maintain a meaningful career,” she said.
“But in addition to that, such a center would give women the opportunity to go to a gynaecological appointment alone or go out for coffee with a friend they haven’t seen in three years.”
But there are significant barriers to opening such centers, including the child care subsidies currently offered to parents.
“We could release a model like this tomorrow, [families] “The biggest problem is we can’t afford it,” Power said.
“We need new funding from the Australian Government Services with these children in mind to develop the skills needed to provide this level of care.”
“Pediatric nurse practitioners should be paid $75 an hour, so the subsidy needs to provide these families with the same discount that all other families enjoy under current child care laws.”
Plans for a ‘game-changing’ childcare centre
Despite these barriers, some childcare centres are still working hard to be inclusive.
The Lake Joondalup Early Learning Program has been running for 12 years and welcomes children of all abilities and needs.
Co-founders Debra Gibson and Jody Jones hope to build a second facility on the same site to cater for children with more complex clinical needs.
“I think this will be a big change, a game changer,” Jones said.
“It’s just so exciting that kids who haven’t had access for so many years are finally going to have access.”
Jody Jones (left) and Debra Gibson are looking to expand their childcare center to care for children with disabilities. (ABC News: Lucy Martin)
Like Ripple Ability, they see a lack of child care subsidies as an obstacle to their plans.
“Currently we are funding additional support to ensure these children receive one-to-one care, but that comes at a cost to our services,” Mr Gibson said.
“One of our concerns is that in order to actually fund new services, we’re going to have to dip into current services. Obviously, this is not viable in the long term.”
The centre is in discussions with federal Early Childhood Education Minister Anne Aly to become a pilot site for a new childcare subsidy model.
“We’re waiting to hear back, so we don’t know what it’s going to look like, but we’re very excited,” Jones said.
Barriers under consideration
Apart from the subsidy issue, advocates have also spent years campaigning for changes to the law.
At present, childcare providers are not covered by the Disability Education Standards Act 2005 .
Three government reviews have identified this as a problem, with the most recent in 2020 recommending that proposed changes be prepared to extend the law to childcare facilities.
Federal Minister of Early Childhood Education Anne Aly said work is underway.
Anne Aley said work is already underway to extend the Individuals with Disabilities Education Standards Act to child care facilities. (ABC News: Lucy Martin)
Two separate studies on early childhood education and care are also underway.
The Productivity Commission is due to publish its draft report in November, and the ACCC is due to deliver its final report into childcare supply in December.
“I don’t want to pre-empt what will come out of the Productivity Commission or ACCC investigations, but much of the consultation that has come out so far has incorporated input from parents of children with disabilities and their views will be taken into account,” Mr Ally said.
“I think there’s a huge opportunity here to really come together as a government across different sectors, as we did with the Early Years Strategy.”
Skeptical reviews claim to bring about change
Monique Power will be launching a petition this week calling for improved access to childcare.
“I’m an optimist, [any] Changes [reflect] It’s a group of kids we’re dealing with,” she said.
“Are you optimistic that the government will address the most important and vulnerable issues? [kids] What will these reforms mean for our society?
“I have no confidence at all.”
Ripple Ability has submitted submissions to the inquiry but has struggled to secure meetings with relevant ministers, including Ali.
“I want to engage with them about the tremendous amount of work we’ve done and the solutions we’ve put together and spark movement towards meaningful change,” Power said.
“We are real people and we need real solutions.”
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Posted on September 10, 2023Sunday, September 10, 2023 at 9:19 PM Updated on September 11, 2023Monday, September 11, 2023 at 3:13 AM