Emma McBride (Dobell, Australian Labor Party, Shadow Assistant Minister for Mental Health) Share this | Hansard source

The only response to the motion of the member for Hughes is that this government is failing children and families through its maladministration of the NDIS. It is about time this government took proper responsibility for the distress and anguish it is causing parent carers. The early childhood intervention approach described in the motion doesn't resemble in any way, shape or form the experience of parent carers in communities across Australia. The NDIS continues to be one of the top reasons families seek out my assistance, and I know this is the case in electorate offices across the country. Many of those crying out for help are the parent carers of young children, who, thanks to this government's NDIS failure, are struggling to secure the support their child needs now. Let's just recount this government's NDIS failures to date: underfunding the NDIS to the tune of $1.6 billion to prop up their own budget position; refusing to lift a staffing cap that is causing delays and barriers to access; and marginalising those with disability who should be at the centre of the NDIS.

Today I will share the experience of one family in my electorate on the Central Coast of New South Wales. This case is yet to be resolved. I'm hopeful that these new measures will go some way to help Sophie and her parents, but they are not optimistic. Sam Stasinowsky has decided to speak out in the hope that sharing her story will help others. Three years ago, her daughter Sophie was born with complex congenital heart disease requiring open heart surgery. Complications resulted in Sophie's vocal cords being paralysed, causing issues with feeding, breathing, speech and sleeping, and endocarditis, a bacterial infection in her heart. In February this year, Sophie was diagnosed with global development delay and, more recently, with autism and an intellectual disability. Sophie's preschool and speech therapist encouraged her mum to call the NDIA to ask for an access request form so she could be assessed for the NDIS. Sophie's mum said she spent hours on the phone, but NDIA staff refused to provide the access request form. She left her details with a service provider, who told her they had a 12-week waiting list for the access request form. In July, she found out that no-one had even looked at her application. The NDIA contact centre said she would have to wait two more months to be eligible to make a complaint. Sam says:

We had spent all our savings and everything we could spare on reports and therapies. We had run out of money and had to cancel Sophie's speech therapy and preschool days.

This was when Sam, in frustration and despair, came to seek my help. Sam's worried that many carers unable to pay for the therapy sessions and reports required to even apply for the NDIS will not get access to the early intervention they desperately need. Many others have to give up work to care for their loved ones while waiting for NDIS plans and services.

Sam says it is important for people to know how hard it is. She said:

The part that has been hugely frustrating is that they didn't give me the correct information or explain the steps clearly when I first called in February. Now I have received the official brochure and the first step in it says "call the NDIA to complete an access request form over the phone" but, back in February, I called two centres and both told me "No".

Last week, Sam received notice from the NDIA that Sophie would receive some basic funding while her full plan was being assessed. That's the good news, but, unfortunately, this family is still being made to jump through hoops due to the maladministration of the NDIS. Sophie's parents decided to apply for equipment that her preschool had recommended for use at home. The NDIA said they needed an occupational therapist report before they could even assess her need for the equipment. The OT report cost another $170, and then the NDIA said no to everything. This young family spent another $170 they could not afford only to be told no once again. They will review the decision, but that will take more time and resources that they don't have.

My question to this government is: what happens to people who can't scrape the money together to pay for the reports and assessments that the NDIA is requiring? What happens to children who don't have someone to speak up for them? Who will advocate for them when the system says no? Even with the early intervention measures outlined, the government's handling of the NDIS is punishing parent carers and will continue to do so until the government addresses the delays and backlogs in the NDIS; lifts the staffing cap, which is causing delays in accessing urgent services; ensures there are enough qualified workers in the sector so that people get the support and care from people well trained to be able to step them through the process; fixes the plagued IT system with its known problems; and appoints a new CEO who has knowledge or lived experience of disability.

This is urgent for Sophie, for Sam and for children like them across Australia and it must be fixed.

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