Tracey Coad helps her 12-year-old daughter Asha with most aspects of daily life, from getting out of bed in the morning, to eating and going to the toilet.
- Tracey Coad says navigating the NDIS was “very traumatic” for her family
- A WA report found the NDIS planning process is complex and stressful
- Advocates say more training for NDIA planners and more flexibility is needed
But when it came to planning for Asha’s transition to the National Disability Insurance Scheme (NDIS), Ms Coad was the one needing help.
In the process of transitioning to the NDIS, she had to navigate a system that WA’s peak disability advocacy group has described as stressful, confusing and bureaucratic.
In preparation for their first planning meeting, she had to gather evidence of Asha’s disability — a rare condition called Pitt-Hopkins Syndrome — and prepare an impact statement to demonstrate the effect this had on the family’s daily lives.
“I felt before going into the planning meeting that we had to become experts on the NDIS, which is a whole job in itself, and just adds another layer of stress,” she said.
“Leading up to the planning meeting was very traumatic.
“We had to ask for letters of confirmation of diagnoses from our doctor, a neurologist, specialists and therapy providers.
“I cried during the planning meeting.”
Ms Coad said the family chose to self-manage Asha’s funding — one of three options for participants — because it allowed the most flexibility.
Asha’s first NDIS plan included more funding for care support — and more flexibility to choose her therapy providers — than what she had under the previous state-run system.
But there were also omissions, such as Asha’s $1,500 ankle foot orthotics, which the family had to pay for shortly after she got her plan.
Support coordination — which is help navigating the complex system, something they were grateful for in the planning process — was also not included.
“I will be strongly advocating for support coordination in [the next] plan,” Ms Coad said.
Feedback suggests NDIS is ‘stressful, confusing, clunky’
Asha is among 32,770 West Australians who have transitioned to the NDIS, almost half of whom are receiving disability supports for the first time.
But a recent report from People with Disabilities WA (PWdWA) showed the Coad family’s experience of shifting to the national scheme was far from unique.
And although WA should have been fully transitioned to the NDIS by June 30, the transition process still awaits roughly 3,817 West Australians living with disability who are still under the old system.
PWdWA surveyed more than 350 people about how they had found the process, and concluded that even when a person ultimately had a good outcome from the NDIS, “the process to get there is stressful, confusing, bureaucratic and clunky”.
“It is evident that people feel that they are having to navigate a complex system that does not appear to be fair and equitable across the board for people with disability, their families and carers,” the report stated.
PWdWA executive director Samantha Jenkinson said while many people had good outcomes from the NDIS, the planning process was not working well.
“It is very anxiety-provoking,” she said.
“The case studies in our report really highlight that the diversity and the flexibility and transparency is missing.
“The language and the bureaucracy are making it really hard for people to understand what their rights are, what they need to do to be able to proceed and to have that flexibility, to know that they are not going to be going backwards or missing out on supports that they used to get in the [WA] system.
“We know that there can be some really great outcomes for people, so it is really disheartening when we are hearing that people are afraid to go into that planning process.
“So we want it to work and I think people still have faith that they want it to work.”
Advocacy group calls for simplified, more flexible process
The PWdWA report made several recommendations to the NDIA, including simplifying the bureaucratic language, increasing training for NDIA planners and improving flexibility.
It commended the NDIA on changes made during the COVID-19 pandemic, pointing to this as evidence the scheme can be made more user-friendly and flexible.
An NDIA spokesperson said the NDIA had announced several initiatives over the last year to support NDIS participants and providers in WA, including a $20 million expansion of the National Community Connector programs to assist people to access the scheme.
The spokesperson also pointed to the Federal Government’s plan for the NDIS, which included goals such as quicker access, quality decision-making, and equitable and consistent decision-making.
In a speech outlining this plan in November last year, NDIS Minister Stuart Robert said rolling out the scheme had not always been easy.
“The image of a plane taking off while still being built remains an apt description,” he said at the time.
“We will take a flexible, yet determined, approach to implementation, guided always by people with disability, their families, carers and other stakeholders along the way.”
WA’s acting Disability Services Minister Francis Logan said more than $1.8 billion would be invested in the NDIS in WA for 2020-21 — almost double what the state would have had under the old system.
“The NDIS is the most significant social reform of our time and the McGowan Government is making sure it works for Western Australians,” Mr Logan said.
“The State Government is considering the recommendations contained in the PWdWA report.”