NDIS: people with severe mental health problems being denied access on ‘a daily basis’

Australians with severe mental health problems are being regularly barred from the national disability insurance scheme, prompting fears that under-resourcing and a lack of expertise are compromising decision-making.

Peak mental health bodies say they are receiving “alarming” reports “on a daily basis” of people with diagnosed psychosocial disabilities being denied access to the NDIS.

A list of 16 recent cases, obtained by Guardian Australia, shows packages have been refused to people with decades-long histories of schizophrenia, major depressive disorders, bipolar and severe anxiety.

In one case, access was refused to a person with a 40-year diagnosed history of paranoid schizophrenia, who experiences delusional thoughts and visual and auditory hallucinations, has been admitted to hospital at least five times, and given regular depot injections.

In another, funding was denied to an individual with a three-decade long diagnosis of major depression, anxiety disorder, and obsessive compulsive disorder, because the NDIS could not be satisfied the person was permanently impaired.

The peak body representing Victoria’s community mental health services, Vicserv, has seen 50 rejection cases in the past two weeks, all for individuals previously on the waitlist for state mental health services or in receipt of commonwealth-funded mental health programs.

It says only eight assessors have been employed to deal with mental health applications – a claim the national disability insurance agency (NDIA) disputes.

The access team faces a vast workload.

By July, it had approved 6,093 people with psychosocial disabilities, mostly in NSW and Victoria. More than 1,200 new participants were added in the last three months of 2016-17 alone.

The NDIS estimates 64,000 people with a long-term psychosocial disability will be approved for support in the next three years, although the mental health sector believes the true number will be closer to 90,000.

The Vicserv chief executive, Angus Clelland, has written to social services minister, Christian Porter, to express his alarm.

Clelland said those denied NDIS support would end up in hospitals or other parts of the health system, particularly in Victoria, where he said funding has been diverted from existing mental health services to the NDIS.

“There’ll be a disaster across the country, really,” Clelland told Guardian Australia.

“Victoria is my main concern, but given the magnitude of the problems that we’re seeing already, if we start amplifying it across the rollout regions … we’re already seeing thousands of people in Victoria who will miss out,” he said.

Clelland is concerned assessors, despite lacking sufficient expertise, are ignoring or disregarding the evidence of GPs and psychiatrists.

“The impression that we’ve got is that because there’s only eight people nationally doing that access work, they’re trained in applying legislation, so if it doesn’t meet the tick-box test, then people aren’t getting through,” he said. “I think there’s huge pressure for them, workload-wise, to make this work. Inevitably those pressures will translate to the access decisions that are being made.”

An NDIA spokeswoman said there were several hundred delegates involved in assessing and approving plans, and that specialist resources were “being developed” to help with applications for psychosocial disability support.

“These specialist mental health staff are able to also provide support to all members of the national access team regarding technical matters related to psychosocial disability,” she said.

Data from NDIS trials shows those with a mental illness are much less likely to be approved than those with a physical disability. One in four applications for mental health support were deemed ineligible, compared with one in nine for the rest of the scheme.

Frontline community mental health workers, speaking on condition of anonymity, are growing despondent as they deal with a system that fundamentally misunderstands the nature of mental health. They say mental health has been treated as an afterthought in a scheme designed primarily for physical disabilities.

A glaring example, support workers say, is the requirement for participants to prove they are permanently impaired. The notion is at odds with the approach of modern mental health treatment, which emphasises recovery and the potential for positive long-term outcomes.

Support workers, desperate to get their clients onto the NDIS, now spend their days trying to prove their clients cannot recover from their mental health problems.

“People are reading these reports about themselves which might describe a very bleak situation … that notion of permanency, that’s not something typically in mental health that we talk to people about,” one support facilitator told Guardian Australia.

“We have this idea of recovery, people can change, their lives will improve. But with NDIS you really can’t say that kind of thing. [You say] this is their life, and they’ll never improve and this is permanent,” she said.

The facilitator has had three out of four clients rejected for NDIS support. One of the rejected clients – a trauma victim with severe anxiety and depression – does not leave her home or answer calls from strange numbers.

Her NDIS request form was sent to her in the post and a follow-up call was made from a blocked number. Without the help of support workers, she would have remained oblivious to the NDIA’s communications.

“That’s part of the lack of understanding: they send a letter, they call on a private number. Our clients don’t answer private numbers, they don’t get their mail. So they really need to have that understanding,” she said.

The NDIA spokeswoman said the mainstream mental health system would continue to cater for the “broader group of people” who need support outside the NDIS. She said the agency was also reviewing pathways to the NDIS and considering the recommendations of a recent joint standing committee report, which looked at psychosocial support under the NDIS.

Like most in the sector, leading mental health expert and former Australian of the year Patrick McGorry supports the notion of the NDIS. But he said mental health had again been treated as the “poor cousin”. He said the requirement to prove permanence of disability was not compatible with mental health treatment and its focus on recovery.

“They do not gel in any way, it’s like oil and water. That’s the problem,” McGorry said.

“We’ve ended up being the poor cousin … we’ve been shoehorned into a system that’s very physically focused,” he said.

An outreach worker, speaking on condition of anonymity, said his experience with the NDIS varied immensely, and that the agency’s handling of mental health had improved over time. But he complained of significant delays in decision-making, which caused anxiety among clients. He also criticised inconsistencies in the way decisions over who could access the NDIS were made.

“There was one case in particular that I was actually quite floored by, and it speaks to that inconsistency,” he said.

“That’s one person who’s been linked in with our service for as long as I’ve been there, not only was there mental health issues, but there was intellectual disability as well.”

Community Mental Health Australia, a coalition of the eight state and territory peak community mental health organisations, has warned the NDIS is at a crossroads.

The group’s executive director, Amanda Bresnan, said the scheme risked losing the already fragile trust of those experiencing mental health problems. If that occurred, many would simply stop engaging altogether.

“We understand that the pressure is coming from government. When they are being told you’ve got to sign up 200,000 by this particular date, and when you don’t have resources to do it, things are going to fall by the wayside,” Bresnan said.

“But these are people with complex conditions requiring support, and that’s what we should be thinking about,” she said. “We’re starting to see this evidence, it’s not just one or two outliers, as the NDIS usually says, it’s actually starting to become a systemic issue.”