’NDIS has failed Robert’: M’bah family’s three year battle
ROBERT Downing walked Janine Cramond down the aisle at her wedding. He was there for the birth of her first child.
All she wants is to acknowledge a 30-odd year bond by giving him his own toilet and shower.
For the past three years, the Murwillumbah woman has wrestled the National Disability Insurance Scheme to help Robert get an ensuite to the makeshift unit she built in her garage.
Seven years ago, at age 53, Robert suffered a stroke that left him with brain damage including the loss of his short-term memory.
He is now one of more than 1690 people in the Tweed Shire receiving funding through the NDIS.
"He lost all his short-term memory, things like the recognition between what you see and what you know it to be," Janine said.
"He might walk out of a room and not know what room he came from.
"He doesn't know what some everyday objects are, doesn't know which are his belongings. He has no concept of time and can't be left alone. Everyday things are complicated for him.
"He is physically able and most of the time you can't tell about his brain injury."
Now about to turn 60, he is unable to live alone and what was a short-term stay from Melbourne to the Tweed with Janine and her family turned into a permanent arrangement.
"When he had the stroke, there weren't many options for him. His siblings didn't think they were in a position to take him in," Janine.
The family converted their garage into a makeshift unit for Robert's four-month stay. It has been his home since.
Janine, who is now Robert's guardian and self-manages his NDIS funding, explained the garage with no doorway into the house did not have a bathroom or kitchen facilities.
While the family cooks for Robert, the worry is in the middle of the night he could get lost walking to and through the house to use the bathroom, a distance of about 60m. It has happened in the past.
"He navigates it mostly OK but there have also been instances where if the children don't put things in exactly the right places, Robert could end up with face cream on his toothbrush.
"There is also the element of privacy … and if someone comes to visit Robert, if they want to have a cup of tea they have to come inside to our kitchen and it becomes a visit with us instead of just Robert."
Robert's plan covers support workers during the day and appointments with people like an occupational therapist.
Janine applied for modifications to install an en suite for Robert through the NDIS and was eventually approved on the specification she used only NDIS-approved contractors.
A Mackay-based contractor was given approval for the work in July 2019. He subcontracted to a Gold Coast operator.
However, the backlog of work was so long for NDIS approved builders that building did not start before Robert's NDIS package ticked over into the new year and the unused funding for his modifications disappeared.
More jumping through hoops saw only half the funding returned to the package.
Further inquiries about the rest of the funding resulted in the NDIS requiring the now one-year-old quote to be updated.
When this was done, the initial quote went up by $11,000 for missed items and it then had to go back to the NDIS for further review of the already approved home modifications.
The review then denied the home modifications reversing the original approval.
The goalposts have moved again, meaning Janine can now get quotes from contractors who are not NDIS-approved although NDIS approved are preferred.
"This has been a three-year battle," she said.
"The NDIS is like a labyrinth with no beginning or end. You deal with a different person every time and you can never ring anyone back because they don't give out their full names or numbers.
"I worked for 15 years as a senior executive in corporate health in Melbourne. This system is not fit for purpose, no way a disabled person could navigate this without assistance … you end up chasing your own tail.
"It is just a nightmare."
Janine said her battle has come at the expense of her own mental health which drove her to starting a gofundme campaign to fund the modification for Robert themselves out of frustration.
"Robert needs his own space to be able to use a toilet or have a shower," Janine said.
"Robert's core goals in his NDIS plan are to be living as independently as possible here. We do his cooking, washing, medication management, all the day-to-day support and life management tasks.
"This thing is the block from him having a sense of his own life."
Janine and her family explored buying a cabin kit as a cheaper option. However, even if Janine's most recent review for NDIS funding is approved there is about $7000 worth of extras they will be forced to fund themselves, things like bathroom fans and toilet paper holders.
"The NDIS has failed Robert in his primary goal … it's like if they put people off long enough then you just give up. It is emotionally exhausting.
"He does not want to go into supported accommodation because with his short-term memory defect it takes him three years to know anyone.
"He would be forced to live with complete strangers and trust them completely with everything.
"He has a community here, we live in a great spot, he is well cared for, and there is a lot of trust and familiarity. He doesn't cope well with change.
"All we want is for Robert to have privacy. For his state of mind and wellbeing he can go to the toilet in the middle of the night without getting lost and confused.
"We don't need anything flash, just to give him the facilities he needs."
Janine even reached out to Federal Member for Richmond Justine Elliot who said the case was just one of many she had advocated in a broken and underfunded system.
"The situation must be fixed," Mrs Elliot said.
"The fact is the NDIS is a complete debacle. I am consistently contacted by people unable to access a range of services through NDIS. Sometimes they are waiting years and it is totally unacceptable.
"I am calling on the Government to fund the NDIS properly. The design and structure of the NDIS isn't working, it was one of the issues raised in the election last year - the staffing caps.
"Things like speaking to a variety of people, the fact you can't call someone back and you always have a new person who doesn't know your case or understand the history of your case.
"People can't access what they need, or at least not in a timely way.
"Robert shouldn't have had to wait three years for access to a toilet."
Ms Elliot said she had brought the case to the attention of Minister for the NDIS Stuart Robert.
Mr Robert was contacted for comment.
A spokesman from the National Disability Insurance Agency said the NDIA worked with participants, their families and carers to identify their needs and goals.
"The NDIA only funds reasonable and necessary home modifications to a participant's primary residence where they cannot reasonably access and use rooms and spaces they frequently use," the spokesman said.
"The NDIA will continue to work with Ms Cramond and Mr Downing to ensure he has the necessary funding for his disability-related supports."
The Tweed Daily News understands under the NDIS, if a participant thinks a decision made by the NDIA about them is wrong, or their circumstances change, they can request an internal review.
Go fund me page found here: https://www.gofundme.com/f/1zx270y4o0