Illawarra parents of children with ADHD are waiting up to a year to be seen by specialists, then forking out thousands of dollars on an assessment and official diagnosis.
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And after all that, with the condition not covered by the NDIS, their kids are still locked out of essential services.
One mum told the Mercury she had tried to book an appointment with 10 different occupational therapists only to be knocked back by them all because she did not have an NDIS funding package for her son.
Other parents said they were playing a "nightmare" waiting game at a time when overloaded paediatricians and psychologists have closed their books to new clients, while draining family funds to pay for allied health services that are free to children on the NDIS.
But with Labor MP Bill Shorten - a vocal champion of the NDIS while in opposition - now at the helm of the scheme, there is renewed hope that ADHD will be classified as a disability so that parents grappling with school suspensions and emotional meltdowns will finally get the help they need.
Lake Illawarra mother-of-four Noni Tonkin, who has a nine-year-old son with ADHD and another presenting with telltale symptoms, said access to the NDIS would help her son to remain in a mainstream classroom.
"Bryce is in Year 2 and we've been struggling since he started preschool," Noni said.
"He's a kind, nurturing, funny boy that has been suspended four times this year because he's lashed out.
"At the last meeting we had with the school they asked me to consider an ED (emotional disturbance) unit because of these minor behaviours, but that's not a place for him."
The school receives some funding for Bryce to get a few hours' help from a teacher's aide, while Closing The Gap grants help cover the $270 monthly cost of his medication.
But Noni is still shelling out $140 a week on a counsellor and has spent more than $3000 on appointments to see paediatricians over the past two years.
"NDIS funding would allow me to pay for different therapies that would benefit him, and give me the support to find them - just having someone there to help me know where I'm going," she said.
Warrawong mum Mary Philippa recalls an incident when her son, Jacob, then four years old, became so frustrated he bit the iPad and cracked the screen with his teeth.
She knew there had to be an explanation for the explosive meltdowns but getting him assessed turned into a five-year battle that drained her both financially and emotionally.
"The nightmare I've had to go through to get him the help that's needed," Mary said.
"Anybody who's gone through this process will totally understand how long it takes and how expensive it is.
"Because it's not just one referral, you have to get him assessed every two years and then there's the cost of the medication, a sleep study, a hearing test, a sight test, speech pathology and all these other assessments that come out of your own pocket."
Last year a medical receptionist for a paediatrician in Wollongong threw the exhausted mum a lifeline.
"I said 'honestly, is there a payment plan or something else just so I can get him properly assessed'?" Mary said.
"And the amazing girl at the desk said 'if you really can't afford it, I can give you the referral to the behavioural clinic at Wollongong Hospital as an outpatient and you can try them'.
"I was lucky I had somebody, by the grace of God, say 'okay, she really needs this help and she's been waiting for the past five years to get him assessed'.
"So now he goes through the clinic which is good, it's just the expense of the medication that adds up."
But as Wollongong mum Sarah* discovered recently, even those who can absorb the financial hit are not guaranteed access to ADHD treatments and therapies.
Sarah's son was kicked out of preschool for being disruptive and was at risk of suspension within five weeks of starting kindergarten.
He was diagnosed with ADHD and was started on Ritalin, after which his parents and teachers noticed a dramatic improvement in his ability to sit quietly with his thoughts and focus.
But medication cannot help him with impulse control or emotional regulation. For that, therapy is needed, which is where Sarah ran into barriers.
Following the instructions on the NDIS website, she found a case worker in her area to help her get set up on the NDIS.
"After conversations with that person, I was told that he wouldn't be eligible for NDIS even though the way that ADHD impacts his functioning is in almost every area of his life," she said.
"It's a disability for him and it is something that he can't get funding support for unless he also has the diagnosis of autism.
"The case worker encouraged me to have him assessed for autism in the hope that he would get a diagnosis for that just so he could get funding.
"So we found ourselves basically unable to find any services for him and just trying to do what we could with him ourselves."
Not being eligible for NDIS funding meant doors were closed on her that would be open if her son had a different type of diagnosis.
"The OT services that I contacted won't take you unless you have an NDIS package," she said.
"I called maybe 10 services and they wouldn't even see him even if we were paying as much as what an NDIS session would cost, which is about $190 or more.
"The psychologists in the area are so flooded with referrals that they don't have capacity to see people so if we were on wait lists it would be six to 12 months.
"Some of them you do need an NDIS package and others you don't, but obviously the fees under the NDIS packages are very high and higher often than the standard session fees, so children with NDIS packages would be likely accepted for treatment sooner."
Sarah said NDIS funding would change their lives in significant ways.
"We would readily be able to access the services, more frequently and over a longer period of time," she said.
"In terms of the affordability, $200 for a session with an $89 rebate is still a huge out-of-pocket expense. For a lot of families that would mean they could maybe see a psychologist weekly opposed to once a month.
"Also something that's not spoken a lot about is that parenting children with ADHD correlates with higher levels of anxiety and depression in their caregivers because it requires a specific type of parenting, but there's no respite care offered unless there are NDIS packages."
Shellharbour's Rhiannon Reynolds said there has never been enough support for either herself or her 13-year-old son, Jason.
When he was four, Jason was diagnosed with global developmental delay with autistic and ADHD traits.
"Autistic traits is where we got screwed over," she said.
Ritalin helped him get through his primary school years, but high school has thrown him back into crisis mode.
"He's got to change classes every hour or so and he's just not coping at all," Rhiannon said.
"He's had five suspensions already this year and we got a request from the school to ask if we could apply for NDIS funding."
But Jason's first diagnosis cost $3000 and Rhiannon's never had the financial means to go through it all again.
And without an updated diagnosis, Rhiannon is reliant on the five free visits she's entitled to under her GP care plan.
"When the NDIS came out, all the fees for occupational therapists and all that went up, so it's just unaffordable," she said.
"And the five visits don't give him enough time to connect with them, so he needs something that's more permanent."
What she would like to see is the red tape removed so that her child can have the same chances as children with funding.
"I think the NDIS should be needs based, not diagnosed basis, because some kids, even with autism, don't need as much help as other kids and especially with ADHD.
"A lot of ADHD kids need the help, but they can't get it."
*Not her real name.
The ADHD Foundation is collecting submissions from adults and carers of children with ADHD about their day-to-day struggles. These will be presented to Mr Shorten during an upcoming meeting to discuss access to NDIS funding. Email: info@adhdfoundation.org.au.
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