September 6, 2021
As a driver for Centacare in Brisbane, Sam Cristaldi spent many years caring for people with disabilities, picking them up and taking them to the hospital or other medical appointments … now he reckons it should be his turn.
The Nanango man never thought he would have a birthday not worth celebrating. But turning 65 has proven to be the worst birthday of his life because it has made him ineligible to access the highest possible level of care now when he needs it most.
“I am dying, I want to enjoy what time I have left,” Sam said.
“If I had NDIS, life would be so much better (because) I could get the things that I need when I need them.”
Sam was diagnosed with Motor Neurone Disease (MND) in December 2019 just three weeks after his 65th birthday, which meant he could not get support under the National Disability Insurance Scheme (NDIS).
It was not just a medical diagnosis but a death sentence; doctors told him he would not see another birthday.
The Nanango battler has been proving them wrong.
Initially his symptoms were slurred speech and fatigue.
He remained mobile with trouble walking far, but as his condition has deteriorated Sam’s house has become his worst enemy because serious modifications need to be made.
He has had a number of falls and near misses due to the difficulty he has walking in his home, where the carpets cause his feet to catch.
He moves around his home with the use of a wheelie-walker or by holding on to the walls and furniture.
His condition has now progressed to the point where he can’t shower alone.
Last month he was taken to hospital after a major fall resulted in significant injuries.
Sam suffered broken bones in his face, a bleed on his brain, a fractured right hand and ligament damage in his left hand.
He has thrown his support behind Spinal Life Australia’s national “Disability Doesn’t Discriminate” campaign to shine a light on a decision made in 2013 to exclude the NDIS from the Age Discrimination Act.
He’s urging all other Australians to sign a petition to insist the Federal Government remove age discrimination from the new NDIS due for release in late 2021.
“Please sign the petition – it takes eight seconds and you could change someone’s life,” Sam said.
“That could include someone close to you and dear to you.”
When Sam was first diagnosed the Motor Neurone Disease Association of Queensland helped him navigate the Commonwealth Home Support Program when he was denied a home care package.
MND Queensland’s director of services Stacey Thorpe advocated for Sam and helped to get him the Level 3 Home Care Package (HCP) he would inevitably need.
“While he has been assessed for a Level 3 HCP, he is only on a Level 1 as an interim due to wait times,” Ms Thorpe said.
“He has been trying to build up the funding in his HCP to a level that he could use it to pay for the carpet to be replaced with more suitable flooring.
“This is a very slow process when he gets about $750 a month and this is not the only modification he needs in his home.”
Stacey said Sam also needs personal care for his showers and receives some support for this from his aged care service provider Blue Care, even though he is at Level 1.
“The whole process is incredibly distressing and disappointing when these expenses could be covered off by the NDIS, enabling Sam to have the best possible care in his remaining years,” she said.
“My Aged Care is intended to help older people finding it harder to complete daily activities, and it is designed to support the frail and aged, not the disabled.
“But even the highest-level home care packages are utterly inadequate for those that need daily personal care, mobility aids, home modifications and regular allied health services.
“The system leaves so many vulnerable Australian’s dangerously unsupported and the impact on the whole family is devastating.
“Some people have even had to sell their family home to subsidise the care needed.”
Stacey said since the NDIS was established, those people becoming disabled after the age of 65 have been discriminated against.
She said people aged over 65 get less support, it takes longer to get that support and what they do have access to is means tested and requires a co-contribution which is not required of a person under the age of 65 receiving NDIS.
MND Queensland is supporting the national “Disability Doesn’t Discriminate” campaign in response to a groundswell of stories like Sam’s.
southburnett.com.au approached local Federal MP David Littleproud for comment but had received no response ahead of publication.
- External link: Disability Doesn’t Discriminate petition