Alysia Stuck In Limbo Due To NDIS Delays

People with disabilities stuck with approvals left unacted on

Alysia Kaiser thought that the NDIS would be her saviour.

Diagnosed with muscular dystrophy 14 years ago, her husband Matt acted as a full-time carer for her. But when the strain caused Matt to have a mental breakdown, Alysia was moved into a care facility, which was supposed to be temporary.

But three years later, and despite three separate applications for NDIS funding to modify her home, she’s found herself trapped in care, two hours from Matt, who’s only able to get time off work to see her once a week.

Their relationship, and Alysia’s mental health, are under extreme stress. Losing hope of ever being able to go home, she says she’s attempted suicide twice.

“I need funding for 24/7 care so I can go home,” Alysia says. “I need a hoist, a bed and modifications to my wheelchair.

“This was supposed to be temporary and I was supposed to go home, to go back to the life that I had there with friends and family, social connections and where my business was flourishing.”

The NDIS approved some of Alysia’s equipment needs in March last year. However, it has no deadline by which it needs to deliver, and so far nothing has materialised.

Boris M Struk, the CEO of Muscular Dystrophy Australia, says it’s a common issue with those dealing with MD.

“The biggest problem is the absolute assessment and reassessment, and yet another assessment of the reassessment, and the long periods of time to finally have it approved.

“Muscles progressively deteriorate making the individual weaker and weaker. The problem is it's a relatively rapid process. So when an assessment is made, it’s not static. By the time, be it 12 months down the track, that it's finally approved, the individual's circumstance could've changed quite significantly, rendering what was agreed to as almost useless.”

With around 4.3 million people living with a disability in Australia, the National Disability Insurance Agency is dealing with a computer system which has been widley described as inadequate, and a government mandated cap on staff of 3,138.

Despite that, Bruce Bonyhady, the architect of the NDIS, says that the system is working for most people.

“As at 30 June the overall satisfaction rate was at about 88%, but what we’re hearing from people and their families is that they want a simpler, faster process.”

But for Alysia and Matt, that change can’t come fast enough.

“The NDIS is covering her ability to stay alive, and that’s it,” Matt says. “And what's the point in that? We need help so she can get back to being the person that I fell in love with. Because she’s slowly slipping away, it’s really hard to watch that.”

An NDIA spokesperson provided the following statement.

For privacy reasons, the NDIA cannot comment on individual participant cases.

Almost 184,000 Australians are now benefiting from the NDIS. This is double the number of people receiving NDIS supports at the same time last year, with approximately 55,000 participants receiving supports for the first time.

The growth in participant numbers has led to a large volume of requests and the NDIA acknowledges that there have been delays in decision making for Assistive Technology (AT).

The NDIA has been working with providers and participants since early 2018 to redesign the planning process to assist participants get the AT they need and avoid delay. In May 2018, an improved process for low cost AT was established to streamline claims that have a value of up to $1,500; this will benefit approximately 45% of claims. A central team has also been established to investigate and address any common barriers leading to delay in AT. More detailed changes are being prepared that will be tested in coming months to further improve the timeliness and consistency of AT planning and decisions.

The Australian Government announced last week that the NDIA’s staffing cap will be increased to 3,138 in 2018-19 and 3,230 in 2019-20, with a further increase in 2020-21, bringing the new, ongoing cap to 3,400. An additional 750 staff will be hired over the next 12 months and targeted training of 6,000 planners and frontline staff will help deliver a better experience to participants. The Government will introduce amendments to the NDIS Act that would allow the NDIS to increase the number of staff who can make access decisions and approve plans.

If you are in need of support, call Lifeline on 13 11 14.