The "good intentions" of the National Disability Insurance Scheme have been lost in its increasingly "rigid" bureaucracy and people are falling through the cracks, an ACT government inquiry has heard.
Speaking to the committee on Friday, Jodie Griffiths-Cook of the ACT Human Rights Commission warned of a "potential mismatch between the culture" of the National Disability Insurance Agency, which manages the scheme, and the legislation from which it was born.
"Standardised" approaches to support planning were not consistent with the individualised system envisioned in the scheme, she said. At the same time, decisions about how much funding people needed and if they qualified for the NDIS seemed to hang on who happened to be "on the ground running the show" rather than an overarching approach.
"That inconsistency alone speaks to a system that isn't full upholding its obligations," Ms Griffiths-Cook said.
Fourteen organisations and one NDIS participant shared their stories on day one of the inquiry, but while almost all supported the scheme in principle, they also spoke of funding slashed without explanation and children missing out on vital early interventions, of people discharged from hospitals into hotels without suitable housing options or else dragged through the court system, and of others who simply "gave up" and left the scheme altogether.
Lauren O'Brien from the ACT Disability, Aged and Carer Advocacy Service told the story of a client with a psycho-social disability who found the NDIS process so "anxiety-inducing" they ended up in hospital.
Chief executive of the service Fiona May said: "For those with [a mental health condition], the scheme was "making them worse...not better".
Canberra Liberal Vicki Dunne is sitting on the inquiry committee, chaired by ACT MLA Chris Steel.
Photo: Dion Georgopoulos
A "poster child" for the NDIS, who had benefited from the scheme so much he even did media spots for the agency, found his plan later slashed by 80 per cent.
Lisa Kelly of Carers ACT said there was no explanation and he was left suicidal and eventually hospitalised.
"He thought he had his life sorted, [his mum] thought she could go back to being a mother, all that changed in a heartbeat," Ms Kelly said.
Since the full scheme came into effect in 2016, organisations pointed to a service market failure, particularly for people with high needs requiring therapy or respite care.
Now that the ACT government had withdrawn from the sector, there was no longer a provider of last resort, putting the most vulnerable at risk, the committee heard.
Earlier this year, a Queanbeyan child with complex needs was surrendered to not-for-profit service Marymead because their family could no longer care for them. Chief executive Camilla Rowland said the system didn't know what to do and, within a month, coordinating care for that child had become unworkable.
Ms Kelly said carers were increasingly exhausted and "disrespected" by the new scheme, without appropriate funding for respite that gave them much-needed breaks from caring.
Calls to the organisation's support centre had surged by 60 per cent in the past 18 months alone, she said, and carers were reporting they were now doing about 10 extra hours a week just to coordinate services under the NDIS.
Some had been forced to cut back their work hours or give up their jobs altogether.
"The idea that the NDIS would free carers and enable them to return to work is not being fulfilled and I don't see that changing, I see it getting worse," Ms Kelly said.
The "hyper-individualised" design of the scheme ignored the needs of the family unit as a whole, providers told the committee, especially in cases where more than one member had a disability.
In one case, three children from the same family were spilt up across three different after-school programs, with three different workers and modes of transport, even though they attended the same school and could have been cared for by one worker alone.
Inefficiencies and duplications within the system were common, according to Community Options chief executive Brian Corley.
His organisation provides plan management and helps connect NDIS participants with local services - something NDIS local area coordinators, which work under Feros Care on behalf of the agency, were originally intended to do.
That role had since shifted almost exclusively to planning and reviewing plans, which were then signed off on by the NDIS, the committee heard, meaning the person approving funding for participants was often never in the same room with them.
Chris Redmond of Woden Community Service said a number of vital programs had to close when they couldn't get NDIS funding.
Photo: Dion Georgopoulos
As organisations spoke of providers chasing unpaid NDIS funds or else closing down altogether, chief executive of Woden Community Service Chris Redmond said the fact the NDIS had had such a detrimental effect on his own multi-service not-for-profit, which was not solely reliant on the scheme, was particularly telling.
While it normally turned over a modest surplus each year to invest back into community programs, this year the organisation was running at a loss and had been forced to cut back on some of those extra services, Mr Redmond said.
"Our viability is at stake."
'Traumatic': NDIS roll-out in the ACT put under the microscope
A Canberran with high needs and deteriorating health was evicted from their home because the National Disability Insurance Scheme would not fund an extra carer for them. A client found themselves $8000 in debt due to poor management and others were left languishing in hospital for more than a year without accessible housing. These are some of the stories detailed by advocacy groups, carers and service providers in submissions to an ACT government inquiry into the NDIS, starting on Friday.
A Canberran with high needs and deteriorating health was evicted from their home because the National Disability Insurance Scheme would not fund an extra carer for them.
A client found themselves $8000 in debt due to poor management and others were left languishing in hospital for more than a year without accessible housing.
These are some of the stories detailed by advocacy groups, carers and service providers in submissions to an ACT government inquiry into the NDIS, starting on Friday.
Some clients and providers reported long delays in accessing mobility equipment such as wheelchairs.
While almost all submissions stated their support for the reform, which aims to improve choices and services for people living with disability, most also described soul-crushing delays in an increasingly opaque bureaucracy. Others alleged incompetence, even "intimidation" at the hands of the National Disability Insurance Agency, which manages the scheme.
The ACT Human Rights Commission accused the agency of cutting it out of the complaints resolution process, while the territory's peak advocacy group for people with disabilities labelled the scheme as "traumatic".
Concerns highlighted across the 70 submissions include:
- Delays in accessing funding keeping clients in hospitals and prisoners behind bars longer than necessary
- Kids missing out on crucial early intervention therapies because of lengthy waiting lists to get into the scheme
- Delays in NDIS payment putting some service providers in danger of closing
- Funding being slashed after requests for support plan reviews
- Wait times blowing out for essential mobility equipment like wheelchairs
- Lack of funding for employment support preventing people being placed in jobs
- Parents considering relinquishing their children due to a lack of high-needs respite care
"There have been times when I felt so stressed over the NDIS I wanted nothing more to do with it," one participant said.
Another said they had less access than before "because no one will repair or replace the [equipment I use] so I have been stuck in my house since it broke 14 months ago unless I struggle to walk with great pain for important medical appointments".
The ACT Disability, Aged and Carer Advocacy Service had been flooded with so many NDIS clients needing help, it said it could no longer keep up with demand - and was often unable to offer advocacy on other matters such as discrimination and employment.
Last financial year, chief executive Fiona May said the service had turned away half of those who asked for help, instead setting up a special team delivering "limited support over the phone".
"We’re having to triage the cases that come to us, with this level of demand [they] have to be at immediate risk of significant harm such as homelessness or institutionalisation," Ms May said.
"This year, we think that data will show even more unmet demand. It's very concerning."
The ACT Human Rights Commission also sounded the alarm over unclear pathways for complaints and appeals within the scheme.
"The NDIA has consistently refused to engage with the ACT HRC in the exercise of its lawful complaint investigation functions," its submission said.
While ADACAS was currently supporting about 30 NDIS clients in the ACT Administrative Appeals Tribunal, the commission said this process was costly, slow and not available to everyone, while it was well placed to offer an informal alternative.
ACT Public Advocate Jodie Griffiths-Cook said many people were benefiting from the scheme, but others were losing out due to a lack of resources.
"It's an equity issue. The burden of responsibility should not rest solely on people with a disability to keep fighting and fighting for the things they're entitled to," Ms Griffiths-Cook said.
"We need to ensure people are informed and empowered to create the change they need to see in their lives."
ACT Minister for Disability Rachel Stephen-Smith said the government had heard a "significant amount" of concerns from local NDIS participants and would consider any recommendations made by the inquiry.
"As the first jurisdiction to fully transition to the NDIS, it is important that the experiences and lessons from ACT are acted upon and inform the national roll-out," Ms Stephen-Smith said.
Chair of the committee ACT backbencher Chris Steel said he hoped the inquiry would improve understanding and recommend improvements to the scheme both for the NDIA and the ACT government.
An improved NDIS pathways program with more face-to-face consultation is being trialled in Victoria.
The NDIA has been contacted for comment.