Children are missing out on early intervention therapies that could stop them relying on welfare support for the rest of their lives, the ACT government has warned.
In a recent submission to the joint standing commission into the National Disability Insurance Scheme, the government said it had frequently raised concerns that a higher number of children than expected were entering the scheme in the ACT – and many were missing out on support.
One of those children is Olivia Ross. While she can’t jump, feed herself or go to the toilet on her own, the three-year-old was “thriving” since beginning early intervention therapies under her NDIS plan in 2014.
Three-year-old Olivia Ross has down syndrome as well as development issues such as difficulty swallowing after being born premature. She is about to miss out on early intervention therapies due to cuts to her NDIS support package. Photo: Jamila Toderas
That was up until July this year when Olivia’s funding for the interventions was abruptly cut. From a support package once in excess of $20,000, the Ross family now have only $9000 to cover all their daughter’s support expenses for the next 12 months.
“She can’t go to the physio anymore and her motor skills are really poor,” mother Monika said. “We’ve had to drop her occupational therapist down from weekly to once every three weeks and choose between developing her toileting or her feeding skills.
“As it is, the money in her plan will run out by December, January.”
Ms Ross said all Olivia’s doctors and therapists agreed the supports were crucial to helping the little girl, who has Down Syndrome and lives with complications from her premature birth, live a happy, normal life.
“We were setting her up to be able to get a job and not need excessive funding later in life,” she said. “We’ve lost a lot of ground.”
According to the ACT government, Olivia’s case is not unusual. A crucial change in eligibility for NDIS early intervention therapy brought in late last year was “being interpreted to mean children with only one area of delayed development are not eligible”.
Those children were now missing out and the costs “pushed back on the ACT”, the submission warned.
In another case, a three-year-old girl was deemed ineligible for support despite having “severely delayed” language skills and a family history of autism.
“Due to being so young formal assessments do not capture this very well,” the submission said. Some tests showed only moderate delay when her scores were scaled, even though she did not complete any of the tests.
In other cases, children eligible for the therapies were missing out simply due to time delays. Wait times commonly stretched beyond six months – a “significant delay at what is normally a time of rapid development”, the submission noted.
“These delays can have a negative lifelong impact.”
Behavioural therapist Cass Hanbridge said using early intervention therapies to keep kids off the scheme long-term was “the whole point”, but she found NDIS planners often ignored reports from doctors and therapists.
“I’ve got a kid I used to work with who I recommended if we put in intensive therapy now, in 12 months time, he won’t need a plan,” she said.
“Instead of getting a reasonable amount of hours [in his support package], he got 10 hours for the whole year, that’s less than once a month.”
A spokeswoman for the agency said it was engaging providers around to deliver “best practice” early intervention for children.
“Children with a delay in one developmental area which does not have substantial functional impact on daily life; or children whose support needs are best supported through health or educational services will be assisted by the early childhood partner to connect to appropriate alternative support services,” the spokeswoman said.
It was also revealed during the inquiry’s Canberra hearings last month that, while most jurisdictions around had less participants enter the scheme than expected, the ACT had significantly more, at about 23 per cent above the estimate.
“If they’d have talked to anybody in the sector, they would have known,” Ms Hanbridge said.
About a thousand children have an NDIS plan in the ACT but more than four hundred eligible Canberrans are still lacking a support plan.
Advocates and workers in the sector have raised concerns about children already diagnosed with conditions frequently needing new assessments to qualify for an NDIS support package.
Local NDIS support coordinator Michel Hansen was busy trying to help a client who had been told by the agency he needed another assessment to keep his support funding.
“The school won’t to do it because he’s not due for another one until the end of year 6 but the NDIS want one now and he’ll lose his plan if I can’t work it out,” she said.
In its submission, the ACT government also raised concerns about children coming to the end of their package at age 7 “falling through the gaps” if their families were unable to afford private providers.
“There is [also] an acknowledged gap in the area of paediatric rehabilitation for children whose condition is still stabilising,” the submission said.
It noted a “limited number of providers” available to families meant some services were forced to “turn families away” and reported difficulties accessing funding for extra staff.
Unexpected delays within the tender process itself, the submission noted, had also caused headaches and forced the territory to once again pick up the cost.
While the ACT government currently helps children access equipment and technology like prosthetic limbs through its own existing loan service, it warned “in kind provision cannot extend beyond transition and there are budget pressures”.
Having withdrawn from providing disability services under the scheme, the ACT government established the ACT Child Development Service (CDS) for children who may not be eligible for the NDIS but still need support.
Feedback suggested many young children were now missing out on getting the right supports and connecting to providers under the NDIS, the submission said.
“The NDIS was never intended to replace mainstream services,” the agency spokeswoman said.
“All children who need more intensive longer term early intervention support services may also become a NDIS participant and receive an individualised plan.”
More than 6,000 Canberrans are now on an NDIS support plan.
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