Fiona Way of Tamworth in the New South Wales New England region has lived with high complex care needs since a 1999 car accident in Sydney left her with an acquired brain injury and paralysis at the age of 31.
Had she not been in a coma, she would have had one of the best views of the millennium fireworks from her room at Royal North Shore Hospital.
Way’s is just one of many stories about rural Australians put at risk by the limitations of the National Disability Insurance Scheme (NDIS).
According to her brother Cameron Way, who lives at Ben Lomond, Way is 95% non-verbal.
Two years after her accident, she was walking semi-independently, but her ongoing rehabilitation was hindered by living in an aged care nursing home prior to the introduction of the NDIS.
When Way’s former metropolitan care provider closed in 2016, her mother and stepfather moved her to the New England region where her brother was able to access NDIS care in Tamworth.
All they have ever wanted for Way is the opportunity to rehabilitate and experience the best quality of life she can, as per the NDIS commitment.
Instead, Cameron Way says his sister’s life was placed at “catastrophic risk” during the pandemic when NDIS provider Challenge Community Services (“Challenge”) in Tamworth gave four weeks’ notice that they were terminating their provision of service.
Guardian Australia has seen the July 2020 letter Challenge sent to Way’s family, in which the care provider stated: “… we are terminating provision service and accommodation as a result of serious continuing concerns regarding the safety of Challenge staff in supporting Fiona”.
According to Cameron Way, there was only one other disability service provider in Tamworth able to take on a high complex disability case, but they did not have any appropriate accomodation for his sister.
Hiring the eight new staff to provide the 24/7 care team she requires was going to be a major challenge in the middle of a pandemic.
Instead, he had to argue for Challenge to allow an extension of three months. Even when it was granted, more disagreement ensued about what date the extension started.
Cameron Way says the the family had described his sister’s behaviours in detail prior to Challenge accepting her as a client in 2016, and was told there would be no issue.
“They agreed, [Fiona’s behaviours were] quite typical for many of their disability clients,” he says.
‘Provider of last resort’
Ross Joyce, the chief executive of the Australian Federation of Disability Organisations, says that providers struggling to deal with an NDIS participant’s behavioural issues is not uncommon, but service provider options are “absolutely” more limited in regional, rural and remote areas.
The latest NDIS report shows the Hunter New England region has 17.2 participants for every service provider, making it one of the worst performing areas by the scheme’s measure.
Joyce highlights that the situation goes beyond cancellation of an individual service, but in some circumstances a commercial or not-for-profit organisation could withdraw the service in a whole area.
“We need to work out who can be a provider of last resort,” he says.
According to Joyce, “this a significant issue, which is coming more to light now that we’ve reached full scheme rollout”.
He believes the planning needs to be put in place before the service provider withdraws support, leaving the person living with a disability “with no one.”
Way was able to stay in her accomodation after her family’s advocacy pressed the issue with Challenge, finding the provider did not have a lease on the state-owned property, and were not in a position to evict her.
Cameron Way says it took nine months to build a new care team with an alternative provider, on top of a long wait for written terms of access to his sister’s home from Challenge.
“The delay was such that the other provider nearly quit, leaving Fiona at risk of ending up back in aged care.”
Research has shown that young people with acquired brain injuries are more susceptible to isolation in aged care, while new rehabilitation models offer better outcomes for recovery, including a return to community living.
Way had lived in an aged-care nursing home for the first 15 years after her accident, an experience she found traumatic, adding physical and emotional problems beyond her original injuries, Cameron Way says.
‘Deep frustration’
Challenge CEO, Peter Maher, told Guardian Australia that “after numerous years of complaints from Mr Way, Challenge felt it was in his best interest to consider another provider for his sister and we offered to assist in the process”.
“Under the NDIS scheme, participants and their families are encouraged to make their own choices in determining the most suitable provider to deliver supports,” Maher says.
“Mr Way’s sister has never been without a house to live in. Challenge has never evicted his sister.”
Paul Chambers, an independent NDIS Coordinator of Supports in Tamworth, who has worked with Fiona, agrees there is a lack of providers in regional areas for high complex cases.
“Every provider is understaffed and looking to employ more people,” he says. “When you’re desperate for staff, the prerequisites and standard of training drops a little bit.”
As a result, Chambers says good behaviour management has become a “lost art” in the disability sector.
For an NDIS participant who cannot speak, for example, it becomes problematic if staff cannot identify the source of their agitation, which might be simply the noise of a bedroom fan disrupting their sleep.
“When such issues or ‘triggers’ are not identified, more higher level behaviours can develop out of deep frustration,” Chambers says.
This leaves providers leaning more on behaviour therapists to solve issues, who are also “swamped” he says.
Long-distance barriers
Chambers highlights a further challenge for regional participants is that all therapists have to charge for travel time, which comes out of the participant’s budget and isn’t factored into NDIS participants’ plan funding.
“When you’re talking about regional areas, 26 hours of therapy support time in a participant’s NDIS plan might turn into 18 or less because of hours of long distance travel time by therapists to see that participant,” he says.
According to Chambers, such travel time is necessary because professional support can be most effectively determined and provided to the NDIS participant in their home environment.
In regional Victoria, Jennie Trigg, executive officer of South West Advocacy Association Incorporated, reports similar issues.
Trigg says all the accomodation available from disability service providers are at capacity in Warrnambool.
One NDIS client Trigg is “desperately trying to find accomodation for” has also found behavioural issues a barrier.
She was not able to access the only supported independent living accommodation available outside Melbourne because it was decided her behaviours would disrupt others already living there.
Appropriate rehabilitation
Cameron Way hopes that with the right environment and funding for his sister’s care, she will be able to make progress towards rehabilitation.
He has achieved a higher level of NDIS funding for a few years, the majority dedicated to paying eight full-time carers to enable better daily care and special rehabilitation approaches for his sister.
“Through the NDIS, Fiona has the opportunity for an appropriate rehabilitation program that never took place after her car accident,” Way says.
“If successful, this will not only give Fiona a better quality of life, but also greatly reduce her remainder-of-life cost of care.”
