THREATENING to drop her 40-year-old disabled son Terry off at the National Disability Insurance Scheme office, carer Shirley McCluand was beyond fed up.
Funding for her son’s basic needs was cut by half and the respite she desperately needed whittled down to just 12 days a year.
“Spend a day in our shoes is all they need to do,” she said.
“Don’t get me wrong I love my son to death but that’s what it was coming down to – it’s not his fault he has issues.
“There’s hundreds and hundreds of kids like him and the government is supposed to be there to help.”
Diagnosed with cerebral palsy, Terry has behavioural issues and needs assistance using the toilet, now much bigger than his parents he has become more difficult to control during an outburst.
Last year Mrs McCluand and her husband John took their first holiday together in 40 years since their son was born.
When the couple first applied for NDIS funding, Terry’s needs had to be documented with the help of an advocate from St Vincent De Paul.
Terry’s personalised plan took months to complete and came back funded for only six months ahead.
“I appealed that, it took well over six months for that appeal and they came back with 12 months worth of funding with nothing for behavioural issues, toileting, it was just the very bare essentials to cover his day programs,” Mrs McCluand said.
“I appealed that again, I had a lady from the NDIS ring up and tell me that’s all I was getting – I just saw red.
“I decided to take it further, I went to Disability Advocacy NSW, I got legal aid and fought them, that took forever and at the end of the day his funding doubled and they offered me one extra day in respite.
“I just said see you in court, I’m not going to accept that – they said nobody would be any worse off and that’s bullshit as far as I’m concerned, I don’t believe a word that comes out of their mouths.”
An NDIS spokesman said it acknowledges the value of short term accommodation to keep families strong.
“NDIS plans are tailored to each participant’s individual circumstances,” he said.
“This is done during the planning process.
“Decisions about the type of supports included in a participant’s plan are made based on what is deemed reasonable and necessary for them including short term accommodation.”
The initial rollout of the NDIS was designed to provide disability support that matched individual needs, as of a March report only 41 per cent of carers for people over 25 in NSW feel they have control of their own service selection.
Mrs McCluand said she still wants more services for her son.
“The NDIS sounded good, but things that seem to be too good usually are.”
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