The early-intervention strategy for children with autism in the $22 billion NDIS is in disarray, and rationing has been introduced for services worth $300 million a year after 30,000 kids were granted access.
Worldwide best practice for autism intervention in young children, known as Applied Behaviour Analysis, requires a minimum of 20 hours of one-on-one therapy a week, but under the National Disability Insurance Scheme most of the youngest children receive about half of that, with packages between $10,000 and $15,000 a year.
According to current data, there are 142,000 participants in the disability scheme and 29 per cent of these have autism, the same proportion as those with intellectual disabilities. But the proportion of those with autism has been increasing slightly — up from 28 per cent a year ago — while the incidence of intellectual disability has dropped sharply from 37 per cent. Among participants aged 25 and over, however, autism accounts for just 5 per cent of clients.
It is this profile that has most alarmed managers from the National Disability Insurance Agency, who have conceded since 2014 that a “higher than expected number of children” accessing the scheme is one of the key cost pressures they are trying to address. The scheme, designed to help 460,000 of the most vulnerable and profoundly disabled people in the country, has large numbers of children who are “high functioning”. Almost half of the 30,000 children aged 14 and under are considered high functioning, meaning they have a “low level of disability”.
“Any implicit suggestion that the NDIS is not financially sustainable is incorrect. To date, each year, the scheme has come in under budget,” a spokeswoman for the NDIA said. “The NDIS operates on insurance principles that allow the identification of areas of potential pressure. Such pressures, including those related to children and autism, are being actively managed to ensure that the scheme continues to operate within the designated full scheme envelope of $22bn.”
The Australian yesterday revealed a four-year study of the project has found as many as one in five has been left worse off, especially those with intellectual and mental disabilities and indigenous people.
Social Services Minister Dan Tehan yesterday told Sky News the report, while critical, identified problems up to December last year that were now being fixed. “All the issues that were highlighted ... work has been going on for the last six months to address those,” he said.
Autism Awareness Australia chief executive Nicole Rogerson told The Australian the scheme was failing children. “I think it is despicable that the NDIS continue to give very small children with autism funding packages of $16,000,” she said. “This falls way short of the amount needed to provide children with best-practice early intervention.”
Typically, it is the parents of young children with autism who are funded to “build their own capacity” to work with their child but other therapy funded includes occupational and speech therapy.
Thousands worse off in NDIS
Mitch Fifield was the assistant minister in charge of the scheme when the Coalition came to power. Picture: AAP
The $22 billion NDIS is failing the nation’s most vulnerable people, leaving as many as one in five, many with intellectual and mental disabilities, reporting that the flagship scheme has left them worse off.
Flinders University researchers, presiding over the longest and most rigorous study of the National Disability Insurance Scheme, have declared it is now “unreasonable” to expect the scheme to be delivered on time, while reporting that about half of all participants have had support cut or experienced no change in support under the new system.
As the Coalition prepares to mount a case for funding the program from general government revenue, and ditching the proposed Medicare levy increase to raise $8bn more for the scheme in its first four years, the four-year evaluation report concludes the scheme is struggling to cope with its workload.
At a “high level”, the scheme is “working very well”, the report says, but key crises that the researchers highlighted probably won’t be fixed before full rollout, which is due in 2020.
“The NDIS also leaves a large minority (about one-third) feel as well off as they were before and it makes a small minority (between 10 and 20 per cent) feel worse off,” the report says. They include many indigenous people. “These proportions come up time and time again in the evaluation’s findings. In most cases of a new policy, leaving a clear minority feeling worse off because of the policy would be a cause for concern.”
The litany of issues has contributed to the erosion of “fairness and equity” in the disability support system, both within the NDIS and outside of it as state governments withdraw their services, the report says. Labor, both in government and subsequently in opposition, claimed to have delivered and fully funded the social program but the reality, the study authors say, is that much of the work was never done.
Bill Shorten refused to match Coalition efforts to raise the Medicare levy by another half a percentage point on all workers, to provide additional funding for the scheme, despite backing Julia Gillard in 2013 when Labor legislated an increase of the same size in the levy. A year on, the federal government dumped the proposal.
“Hindsight suggests that the speed of the implementation was too fast and that more thought needs to go into the practical aspects of the NDIS rollout,” the study says. “Some of the practical issues appeared to be getting solved during the four-year evaluation period, some remained largely unchanged and some appeared to be getting worse.”
While bilateral agreements signed under Ms Gillard locked the scheme into an almost impossible schedule, the accompanying legislation was so broad it left bureaucrats to sort out the details of how the NDIS would work.
In addition, the assistant minister in charge of the scheme when the Coalition came to power, Mitch Fifield, capped the number of staff the agency could employ once the scheme was fully rolled out at 3000, down from a Productivity Commission estimate of 10,000.
The report says the scheme has precipitated the “casualisation of the disability workforce” and the reachers say they gathered evidence “of the impact on NDIS working conditions”.
“Issues relating to the ability to pay staff award rates within NDIS pricing levels and managing the dichotomy between minimum shift hours under industrial awards and NDIS participant requests for shorter services were highlighted,” the report says.
Experienced disability workers are leaving the industry and the proportion of providers who said they were unable to fill allied health worker vacancies doubled from 2014 to last year. Staff working at the National Disability Insurance Agency have reported “increasing concerns about high workloads and stress” and there have been “considerable levels of turnover within the agency.”
“Work stress was linked to high rates of resignations and in some cases adverse health impacts for staff,” the report says.
One employee of the agency told researchers that staff were “burnt out” and “at the end of themselves” because they thought most of the work would have been put to bed by now.
“In fact the next three years will be more chaos and it’s really going to take five years for anything to be settled,” an employee said.
The study — which involved a range of quantitative and qualitative research with more than 15,000 NDIS participants, carers and a comparison group outside the scheme — found better outcomes were had by those who could fight for themselves, or who had family and friends to advocate for them. In the Northern Territory’s Barkly region, “participants living in remote Aboriginal communities were shown to have particularly limited outcomes”.
Connections between the NDIS and state systems such as foster care, education, justice and health remained unwieldy five years after launch.
“Service gaps also emerged as the rollout of the NDIS progressed,” the report says.
“In addition, insufficient sharing of client information between the NDIS and the mainstream (state) sector had led to service duplication, while delays in transitioning people into the NDIS (were) contributing to longer outpatient waiting lists and lengthier hospital admissions.”
Children with well-educated or well-resourced parents were particularly well included in the scheme. About half of the 140,000 participants so far in the NDIS are teenagers and children. Autism accounts for 29 per cent of all participants. “I think the parents who jump up and down and send things back for reviews … get more,” one participant told the researchers.
About 65,000 people with severe and permanent mental illnesses will be covered by the NDIS but the federal Department of Health estimates at least 90,000 will be eligible.