NDIS: Parents say disability scheme failing to deliver support promised (ABC)

Parents of disabled children say the National Disability Insurance Scheme (NDIS) is failing to deliver what was promised.

It was launched nearly 10 months ago at five trial sites across Australia, and in South Australia has a focus on children up to the age of 14.

But some parents say they are feeling ambushed and confused as they try to negotiate the bureaucracy.

Michaela has a three-year-old son, Harry, with cerebral palsy.

She says the South Australian trial of the NDIS started off well but did not last.

"The first plan was very supportive, we felt quite prepared and aware of the process and then we got to our second plan review and it was very rushed, it was with someone new that we'd never met before who didn't know Harry or his unique set of challenges and suddenly his access to therapy was significantly slashed," she said.

Harry's mother says the initial assessment meeting with NDIS workers was positive about what her son required.

But she says the follow-up sessions left her feeling judged, unsupported and confused about how to negotiate the support system.

"I guess we were seeking something very unique to Harry and to what he needs as an individual and what we got was more of a one-size-fits-all plan, so 'here you go, here's your funding, try and make that work for you'," she said.

Some people 'fought like crazy' or 'knew somebody'

It would seem Michaela is not alone. David Holst, who chairs the Intellectual Disability Association of South Australia, says it is frustrating that support goes to those who make the best case and some parents are better able to do that than others.

"There have been people who've had good services because they've fought like crazy or got lucky or knew somebody," he said.

"The greater majority haven't been able to do that and they shouldn't have to do that."

Mr Holst says there has been dramatic change since the NDIS first was proposed.

He says the funding available is being tightened and limits put in place.

"With the budget becoming very much about money, my information is that a therapy package is about $12,000 a year, not $16,000, and that they'll only go to 16 in special circumstances or if parents can present a compelling case," he said.

Instead of the tailor-made programs which were promised, parents say they are being directed about how to spend the money.

Many are turning to peer support groups which have been set up by families affected by disabilities.

Jennifer is involved with one of those groups.

"My husband was brain-injured in an accident in 2008," she said.

"That led me to realise the incredible need for people to engage in the system and it's a complicated system.

"Suddenly you're thrust into disability, whether it's a child or like our family."

Advocacy groups on the rise

Mr Holst thinks more people will join advocacy groups, Facebook pages and other social media campaigns until the system is made clearer.

"That is likely to be a growth area and a growth business. The rules aren't even clear on who can go to the assessment meetings, who a person with a disability or family can take with them to argue their case and there is - obviously when a situation is confrontational or by negotiating - there's a need that people are properly represented," he said.

South Australia's Minister for Disabilities Tony Piccolo says he is aware of the concerns raised by parents.

"I don't think they should have to fight for their rights but I don't see the creation of the advocacy groups as a bad thing," he said.

"[The NDIS] is providing funding for these groups. Shared experiences help people understand the system and better communicate their needs," he said.

Mr Piccolo says parents should persist in advocating for their children's needs and can appeal if they do not think they are being given a fair budget.

"What I would ask is that parents be patient and also be persistent and if there are indications that the scheme is being, if you like, changed to fit a reduced budget we'll be monitoring that very closely and we will fight the Federal Government if they were attempting to wind it back in any way," he said.

http://au.news.yahoo.com/a/-/latest/23058747/ndis-parents-say-disability-scheme-failing-to-deliver-support-promised/