Disability groups have warned that people with profound intellectual disabilities risk being ignored by the NDIS when federal funding for seven peak advocacy bodies runs out next month.
The peak bodies represent people who are blind, deaf, autistic, have Down syndrome or acquired brain injuries, and people with an intellectual disability.
Groups such as Inclusion Australia argue there are likely to be people with intellectual disabilities who have no advocates and are unable to meaningfully enter into the NDIS planning process.
Professor Christine Bigby, director of the Living with Disability Research Centre at La Trobe University, said the NDIS had not “really paid a lot of attention” when considering how to help those with profound intellectual disabilities who did not have advocates.
“A lot of people with severe and profound intellectual disability – in particular those people who still live or have moved out of institutions in the past – have no advocates,” she said.
“Very few of them have family members who can act and interpret their needs and wishes and support them to make decisions and they need support for decision making.”
NDIS delivers ‘choice which wasn’t available before’
In Newcastle in the New South Wales Hunter region, 25-year-old Shannon Landi is involved in an NDIS trial.
Shannon has a genetic disorder called cerebral ocular muscular syndrome which has affected her brain, her sight, her physical development and her mobility.
She lives with her mother Vicki Landi in the Hunter region, which is one of the seven trial sites for the NDIS.
When the trial in the Hunter started in 2013, Shannon and her parents sat down with a planner sent from the National Disability Insurance Agency (NDIA) – which runs the scheme – to plan a financial package.
They received a new bathroom that could accommodate a wheelchair but perhaps more importantly for Shannon, she can now choose her day activities from two different disability service providers.
NDIA Shannon Landi bathroom
Photo: Shannon Landi’s new bathroom funded for under the National Disability Insurance Scheme (NDIS). (Supplied: Vicki Landi)
Ms Landi said the increased choice was the biggest benefit of the NDIS.
“We get the best of both worlds. So that’s the best benefit. These guys get to choose, they don’t just go to one [service provider] and have to do what’s there,” she said.
“They have that choice which wasn’t available before.”
Ms Landi said she also now had more control about who worked with her daughter.
“I’ve had workers and said ‘no this person isn’t appropriate’,” she said.
“And if Shannon doesn’t like [them] then no sorry. And Shannon will let you know who she likes and doesn’t like. And with NDIA you get that choice.
“Shannon likes chatty, happy people. If she got someone really quiet … [she] wouldn’t like it.
“[When] she’s in a car, the madder and crazier you are, the more she likes it. The louder you’ve got the music [the better].
“I want people who talk to her and teach her things on the way.”
Fears for those without advocates
But not everyone has such strong family support and disability groups fear that people with profound intellectual disabilities risk being ignored by the NDIS when funding for some advocacy bodies runs out on March 1.
“At a time when the NDIS is in it’s infancy … don’t you think that would be a good time to hear from the peak organisations about what those needs are?
Inclusion Australia president Kevin Stone
Professor Bigby said people with intellectual disabilities were expected to make up 40 to 60 per cent of NDIS participants.
“Yet up until now they haven’t been really involved in the representative structures like the board or the advisory reference groups,” she said.
“People are beginning to realise they’ve been left out and I think the NDIA has begun to talk to some of the advocacy groups about that.”
But just as consultation gets underway, the Federal Government has cut funding to seven peak disability groups.
One of those groups is Inclusion Australia – the national council on intellectual disability.
“At a time when the NDIS is in its infancy and we’re trying to get this right for all the various needs of people with disabilities, don’t you think that would be a good time to hear from the peak organisations about what those needs are?” Inclusion Australia president Kevin Stone said.
I know this would sound horrific … you hope they go before you do because your biggest nightmare is what the hell is going to happen when you’re not there?”
Vicki Landi
Mr Stone said in the past six months the NDIA started listening to the advice and experiences of people with intellectual disabilities and their families.
“In many instances they have a very naive understanding of a person’s capacity to enter into the planning process,” Mr Stone said.
“They think that someone’s going to come in and sit down and tell them exactly what they need and how much they want. It doesn’t work like that.”
Assistant minister for social services Mitch Fifield said people with intellectual disabilities would be represented by other peak disability organisations.
“For the first time the Federal Government has made national peak body funding contestable which is something that large numbers of people had asked to happen,” he said.
“As a result, there are some new organisations which are being funded for the first time [and] there are also some organisations which won’t continue to receive funding but whether a body is funded or not, their input is important in the development of policy and the development of legislation.”
Service providers not to talk on behalf of individual: NDIA
Liz Cairns, NDIA operations manager, said there were systems in place to help people with profound intellectual disabilities – and who may be non-verbal – have more choice and control at a planning meeting.
“We can arrange for an independent advocate to attend,” she said.
“Where needed, we’ve also got the ability to appoint a nominee if that person simply hasn’t got the ability to represent themselves. That’s a kind of line of last resort for us.”
But some disability advocates reported cases where service providers were the only support person at an NDIS planning meeting.
“The service provider would have a really important role to play in that planning conversation,” Ms Cairns said.
“But the role would not be to talk on behalf of the individual in the same way [as] when we appoint a nominee.
“The requirements of the nominee in the legislation are really clear. Their job is to represent the interest of that individual.
“We understand there can be a conflict of interest – a real or perceived conflict of interest – if the service provider is doing the job and in that event we would engage someone else.”
In Newcastle, Ms Landi cannot contemplate a future where she is not around to protect her daughter Shannon.
“I know – and this would sound horrific to any mother who hasn’t got a brain injured child – you hope they go before you do,” she said.
“Because your biggest nightmare is what the hell is going to happen when you’re not there.”
Read the full story... (off-site)- Topics:
- NDIS
- Author:
- Jennifer Macey
- Source:
- ABC PM
- Date published:
- Wed 25th Feb, 2015