THE landmark $22 billion NDIS rollout is looking shaky with state and federal ministers yet to detail how the scheme will move from 9,000 trial participants to cover all the 460,000 people with a severe disability by 2019.
While most families have quickly got access to extra therapy under the NDIS trials there are still lengthy delays for wheelchairs and up to a third of those with a mental illness have missed out on a plan.
Three year old Tulli Seabert taking part in a trial of the NDIS in Victoria had to wait 12 months for a standing frame included in her plan and now faces an indefinite wait for a wheelchair.
However she is getting physiotherapy and occupational therapy weekly instead of every three weeks before the scheme.
Her mum, Bek, used to get respite care one afternoon a week now its three afternoons a week and she’s hoping one day to go back to work as a hairdresser.
For four year old Molly Paardekooper who suffers a rare form of epilepsy that has left her with acquired cerebral palsy and brain injury the NDIS has been a godsend.
She used to get access to physiotherapy or occupational therapy and speech therapy just once every six weeks.
Since entering the NDIS trial in the Hunter she sees a speech therapist fortnightly and gets fortnightly care from a physiotherapist or an occupational therapist.
She has received funding for a leg brace to improve her walking and swimming lessons to improve the strength in her legs. Her mother says there has been a noticeable improvement in the use of her arm as a result of the help but the funding is being quickly eaten up.
The government is collecting $3.5 billion a year in extra taxes to fund the scheme but has so far spent just $400 million on the scheme and with its budget under pressure there are fears it might delay the rollout to improve its budget bottom line.
The minister in charge Senator Mitch Fifield says it is fully funded for the next three years in the May budget and he says there is no intention on the federal government’s behalf to delay the full roll out.
However, there are the 450,000 families and individuals still waiting to get a disability plan who have no idea when the scheme will get to them and who are now finding it harder to access services outside the scheme.
Hieke Folbig has racked up a $300,000 disability debt caring for her two severely disabled children as she desperately waits for the disability minister Mitch Fifield to reveal how and when he’ll roll out the full NDIS.
In the last year her 14 year old son Kye who suffers hereditary plastic paraplegia, has lost the ability to walk, toilet and swallow.
The Sydney mum has had to pay out of her own pocket for wheelchairs costing $27,000, making her home wheelchair accessible and for speech therapy, psychology appointments, nappies and catheters.
Linda Brooks has six children, four with a disability, she cares for her granddaughter who has a learning difficulty and her 80 year old husband with a collapsed back, she also has cancer.
The Gold Coast mum knows just how hard it is to fight to get funding for wheelchairs and therapy and with her health problems she’s desperate to know when the National Disability Insurance Scheme will come to her region.
Linda’s 18 year old son Jordan who suffers cerebral palsy has outgrown the wheelchair he received four years ago after a growth spurt in puberty but his parents need to find $1,200 towards the cost of a new one.
Jordan receives just 5 sessions a year of either speech therapy, occupational therapy or occupational therapy.
“Therapy doesn’t exist unless you get it through the school and they don’t have much,” says Linda.
An expert at working the system Linda knows she has to get as much help as she can for her children before they leave school because “after that you get no funding”.
“I’m hoping when the NDIS comes I won’t have to fight charities and different organisations to get help, she says.
Linda was diagnosed with gall bladder cancer in 2006, breast cancer in 2006 and it has now spread to her bones.
“I try to turn off, try not to think, I won’t let the cancer get to me,” says the prime carer of six people who rely on her.
The minister in charge of the NDIS Senator Mitch Fifield told News Corp Australia the federal government is “not looking for a reason or a rationale to delay” the scheme.
“We want it to be rolled out as quickly and effectively it can be,” he said.
However, he has conceded it could be another seven months before the plan for the full roll out is public in mid- 2015 with bilateral negotiations with each state now underway.
And he is not ruling out variations to the timing of the rollout if the states call for it.
“If there are practical, real life factors which need to be addressed we’ll cross that bridge when we come to it,’ he said while stressing no state had asked for a delay yet.
It is likely the scheme will be rolled out in a different way in each state with some considering a geographical rollout, others by age cohort and some looking using a waiting list approach that will provide services to those who have none first.
From July the government began collecting $3.5 billion a year through a half a per cent hike in the Medicare Levy to fund the NDIS but has so far spent just $400 million.
Disability groups fear there could be pressure to delay the scheme to prop up the budget.
Senator Fifield says the scheme was funded for the next four years in the May budget
“People need to see commitment to the timetable being made real and that it has all the elements to allow for it to be in place,” says spokesman for the Every Australian Counts Campaign John Della Bosca who is re-energising the campaign that helped set up the scheme.
To move to full roll out the scheme will need to expand from the current 9,000 participants to 460,000.
The current 100,000 strong workforce needed to support the scheme will have to double.
There are already squabbles that the $38 an hour funding for care under the scheme is inadequate and some providers are closing their doors because they can’t break even.
The funding will be cut next year to $35.77 an hour.
“People’s packages are being squeezed and people are getting less of what they need and have less choice because the market can’t provide quality care at that price,” says National Disability Services chief Ken Baker.
A State of the Disability Sector report to be released Monday has found four out of five disability service providers believe the policy environment they are working in is uncertain and seven out of ten think the government is not responding to their needs.
National Disability Services says providers need a plan for the full roll out from the government so they can plan their services to meet the demand.
Some families in trial sites for the NDIS are still facing 12 month delays to acquire equipment like standing frames and wheelchairs.
Some claim it would be cheaper and quicker to order the equipment online from Walmart in the US than use the providers in Australia.
The National Disability Insurance Agency (NDIA) that runs the scheme has asked the Australian Federation of Disability Organisations to investigate and Senator Fifield has acknowledged it is a problem.
Recently the NDIA approved workers to provide care who had no TAFE qualifications or experience but Senator Fifield says he doesn’t want the scheme over credentialed and people with a disability have a right to choose their carer.
“Not only have we not seen any benefit from the NDIS things are getting worse because everyone is waiting, no-one is putting any money on the table until the NDIS comes because some government agencies may not exist when the NDIS starts,” says Ms Folbig.