Anne Napoli is passionate about a great many areas which concern the community, but her greatest passion is her son, Patrick.
Patrick had an adverse reaction to the triple antigen vaccine as a baby, and is both physically challenged and unable to speak.
“Initially we were told he would not live past the age of three. When he got to three, they said he would never live past the age of seven,” Mrs Napoli said.
Against the odds, Patrick is enjoying life to the fullest, and Mrs Napoli said while he was “never meant to walk”, he often plays basketball and bowling.
“He goes to Family Funland every day – that’s his passion,” she said.
Having a disabled child has opened Mrs Napoli’s eyes to so much and has led her to become an advocate for the National Disability Insurance Scheme (NDIS), of which Patrick is a recipient.
She also acts as an advocate for others in the community affected by disability.
And, while services have greatly improved in the last 42 years since Patrick’s diagnosis, Mrs Napoli recognises there is still a long way to go.
“NDIS is a great scheme – there’s still a long way to go to fine-tune it, to make it more sustainable – but I’m confident it will happen,” she said.
One particular concern, Mrs Napoli notes, is the number of people who need support or funding yet may have been overlooked.
“A lot of people think, ‘I’m not eligible’, but I urge them to seek support, challenge the decision.
“Anyone with a significant disability is eligible for NDIS funding or some sort of funding.”
She said while she’s sure “everyone wants to do the right thing”, there needs to be further education for carers, individuals, and service providers.
And, she would like to see the system improved to become more flexible and user-friendly, particularly regarding the planning process, assessment, and how the funds are delivered.
“It’s hard to navigate the system,” she said
“I go so far as to use a ledger.”
Mrs Napoli said while the NDIS is “a wonderful scheme” in supporting the individual, it is lacking in support for carers.
“There’s never been enough recognition or support for carers – there’s no work cover, super, holiday pay, or sick pay – you soldier on regardless how you feel.
“Carer support is something I want to see integrated into the NDIS.”
She said however there is also a concern over people making fraudulent claims, whether unintentionally or deliberately.
“These are the most vulnerable people in our community,” she said.
“And to take advantage, I think it’s really, really sad.”
She also recognises “people are still uncomfortable” discussing disability.
“I don’t know why people are so uncomfortable – just treat the disabled like anybody else.”
Mrs Napoli said Patrick has taught her a lot, and that she owes to him what she is doing in her advocacy.
“He’s such an inspiration to me and to others. Nothing holds him back – he does the best he can with his abilities.
“He’s always happy and I think, if he’s happy then what have I got to complain about?”
“Our main aim is to keep him happy and safe.”
Mrs Napoli also explained there is technology available, or can be made available, for the disabled and she encourages individuals and carers to seek them out.
With the aid of a communication device, Patrick was able to speak his first words to Mrs Napoli, ‘I love you.’
Mrs Napoli encourages people not to give up and to seek support through either an advocacy service or through a family member.
For those who believe they are not receiving the right services or are feeling hard done by, Mrs Napoli urges them to report it.