Early intervention for children with disabilities is critical, yet as a result of NDIS roll-out delays and bungles, some Eurobodalla children are facing a lifetime of unnecessary challenges.
Finley Shanahan, 18 months, may spend her life in a wheelchair after being unable to access adequate support for the past year, her mother Maddison fears.
“Finley was deprived of oxygen at birth, and she had a stroke and multiple organ failure,” she said.
“Obviously, once your baby has had a stroke, there’s going to be issues.
“Regardless, she now has cerebral palsy, but there were always going to be certain delays, whether it be physical or mental, due to the brain damage she sustained.
“We were told there’s a chance she would be in a wheelchair, but early intervention could help us get her to be the best she physically can be.”
However, since moving to Batemans Bay, the family says it has been caught in an NDIS administrative tangle – and their toddler has not received the help she needs.
They told us a lot of her symptoms have gotten worse.- Maddison Shanahan
“Finley was born in Newcastle,” Mrs Shanahan said.
“We were set up with the Cerebral Palsy Alliance (CPA) up there, and transitioned to the CPA down here.
“When the CPA told us they were closing down (in the Eurobodalla), we had talked to them about the NDIS already.
“We had all our paperwork in. It took us a while to get together, because there were so many doctors and specialists involved.
“I contacted the NDIS a lot, by phone and down here, and they had never heard of our planning meeting (with the CPA).
“CPA said they’d sent it all through, but it’s just kind of gone missing.”
Like any toddler, Finley is keen to be active, but the help she once had was interrupted – and her parents fear she has gone backwards.
“A walker, occupational therapy, speech therapy, physical therapy, that’s just the usual stuff that we used to do weekly,” Mrs Shanahan said.
“Last time we met with her paediatrician, they told us a lot of her symptoms have gotten worse.
“She has spasticity in her muscles, which makes it hard for her to move around, and she actually has a lot of issues now in her chest that were never picked up on.
“A speech pathologist or a physio most likely would have.
“So now we’re facing new issues, because we have been without support for so long, there are things going on with Finley that we weren’t aware of, because we’re not specialists.
“My husband and I do a lot of Googling ourselves to try and meet the needs that she’s got, but there’s only so much we can do.
It's so scary to think her future might be so much more limited.- Maddison Shanahan
“We see a neurologist, a neo-pathologist, paediatricians, sleep people, ear nose and throat specialists, and they’re all asking us what we’re doing currently, but we can’t do much – we’re facing pressure from everywhere.”
To develop, Finley needs regular therapy, close to home.
“I’d just love access to something, anything,” Mrs Shanahan said.
Help doesn’t come cheap.
“We had to purchase her mobility walker ourselves, which in Australia was $1600,” Mrs Shanahan said.
“In the end we got ours (from America) for about $600, but she’s already just about grown out of it.
“I don’t know where we’re going to get the money to purchase another one.
“She needs additional supports in her stroller, because she can’t sit up on her own.”
Mrs Shanahan said the experience was frightening.
“It’s so scary to think her future might be so much more limited, just by this 12-to 18 months where we can’t get anything in our area,” she said.
There is absolutely no question about whether Finley should be on the scheme.- Cate McMath, Muddy Puddles CEO
Finley has been granted access to the National Disability Insurance Agency – but the ordeal isn’t over.
The family must attend planning meetings before an NDIS plan is developed and approved.
Muddy Puddles CEO Cate McMath said the process was unnecessarily protracted.
“We’re well over a year into the roll-out, and people that are in obvious need need an NDIS plan, and they need it this week,” she said.
“There is absolutely no question about whether Finley should be on the scheme, she should be on the scheme.”
Ms McMath said Finley was not the only Eurobodalla child missing out.
“There are a lot of families out there that have been unable to access services for over a year,” she said.
“I realised early on there were potential problems, because there weren’t enough resources on the ground to partner with families and help them navigate which path they should take.”
The agency responsible for the roll out of the NDIS told the Bay Post/Moruya Examiner it could not comment on individual cases, such as Finley Shanahan’s.
“Providers ... are contracted by the NSW government during the NDIS Transition, until June 2018, to support children approaching the NDIS needing early intervention supports,” the authority said.
A spokeswoman said the nature of the roll out could cause “perceived delays.”
One of our key focuses is making sure plans are created and submitted in a timely ... manner- Cerebral Palsy Alliance
However, the Cerebral Palsy Alliance said it had to submit toddler Finley Shanahan’s care plan to the NDIA twice.
“When the family moved to the area we immediately submitted to the NDIA on 18 July, 2017, to be their local transition provider,” an alliance spokeswoman said.
She said the alliance was approved as Finley’s transition provider on August 29, and met the family on September 6.
It provided services such as physiotherapy until September 22.
A draft plan was sent to the Transition Advisor for review, as per the approved process, then submitted to NDIA on 29 September 2017.
The alliance said it checked with NDIA on November 24. The agency asked them to resubmit the plan on December 6.
“CPA is one of three Early Childhood Early Intervention transition providers in the wider Moruya area,” the spokeswoman said.
“We follow National Disability Insurance Agency processes to ensure the best outcome for our clients.
“One of our key focuses is making sure plans are created and submitted in a timely and professional manner.”
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