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Thousands of children with Fetal Alcohol Spectrum Disorder miss out on NDIS funding due to lack of diagnosis


Thousands of children with Fetal Alcohol Spectrum Disorder (FASD) are missing out on National Disability Insurance Scheme (NDIS) funding because there are so few specialists who can diagnose and assess the impact of the disorder.

Samara (last name withheld) from Rockhampton in central Queensland has two foster children who have FASD, but Samara considers herself lucky because she has access to funding from the NDIS.

Her children are at the opposite ends of the FASD spectrum. Her 10-year-old daughter has a severe brain impairment while her six-year-old son’s disorder manifests itself in behavioural issues.

Access to NDIS funding has meant Samara has a support worker for her daughter that frees up time to spend with her son.

FASD facts:

  • Alcohol can cause damage to an unborn child at any time during pregnancy, even before a pregnancy has been confirmed
  • Up to 5 per cent of the population is thought to have FASD
  • In some Indigenous communities it could be up to 12 per cent
  • There are five FASD clinics in Australia
  • The Federal Government will provide $9.2 million to the National FASD Strategy which launches this year

Sources: Dr Heidi Webster www.nofasd.org.au

“It allows my six-year-old to participate in martial arts and it means we can do all of these things that we couldn’t do before because we were going to therapy all the time,” Samara said.

However not everyone with FASD is as fortunate as Samara’s children.

There are only a handful of clinics in Australia where children can access specialists to carry out in-depth assessments that can then qualify them for NDIS funding.

FASD is thought to affect up to 5 per cent of the population, which means about 1.3 million people.

As of June this year, the NDIS approved plans for 265 people with a primary disability of FASD.

A spokesperson from the NDIS said the number of participants was likely to be higher as they may have FASD but not record this as their primary disability.

Samara is concerned that if her six-year-old did not have the funding it would have a dramatic impact.

“It has allowed him to stay in a mainstream school with the help of his therapists [and] it’s helped us get access to medication that’s supported him,” she said.

“I worry for children with FASD especially at the end the spectrum he’s on. There’s a great risk of entering the criminal justice system and substance abuse, and I feel he’ll be one of those children if he doesn’t receive the support he’s currently getting.”

Samara said she had the financial means to pay thousands of dollars to make the 1,600km round trip from Rockhampton to the Gold Coast clinic to have a diagnosis and thorough assessment.

“It took quite a bit of work,” she said.

“My eldest was on the waiting list for the fetal alcohol clinic on the Gold Coast for just over two years and then my youngest just over 12 months.”

Despite it being an ordeal, Samara said it was more than worth it.

Life-changing early intervention

Information from the FASD specialists on the Gold Coast were fed back to the family’s therapists in Rockhampton, and they now have recommendations and goals to work towards.

Samara said the diagnosis and assessments had cemented the importance of early intervention.

“My 10-year-old didn’t have any early intervention because we weren’t sure what we were dealing with, whereas my six-year-old has had early intervention since he was three,” she said.

“He’s made really good gains because of that early intervention.”

The early intervention for Samara’s son has meant he has had access to speech therapists, occupational therapists and psychologists and, as a result, has made significant improvements.

Samara paid for this therapy privately until the NDIS funding came through, but now these specialist services are paid for.

Not so lucky

John (last name withheld) also lives in regional Queensland and has spent the past six years trying to get a diagnosis for his 14-year-old daughter.

He’s been to myriad specialists, including psychologists and paediatricians to search for answers, but no-one has been able to explain his daughter’s extreme behaviour.

This has caused her significant issues throughout her childhood, especially at school.

Recently, John contacted the Russell Family Fetal Alcohol Spectrum Disorder Association (RFFASDA) and he is closer to an answer.

His daughter’s symptoms are straight out of the FASD textbook and he has booked to see a paediatrician with an understanding of the condition.

“A diagnosis would make a huge difference and maybe the teachers would know how to better deal with her,” John said.

Access to FASD assessments

RFFASDA founder Anne Russell said every person with FASD should have access to the NDIS.

Ms Russell said early intervention between birth and age seven was critical for therapists to help improve a child’s potential, something parents did not have easy access to before the NDIS.

She said parents needed to be vocal advocates for their children to get an FASD diagnosis and access treatment.

“I think the NDIS will be a great thing, but parents are going to have to push for a while, and they are really going to have to put their foot down,” Ms Russell said.

An FASD diagnosis means health professionals can perform thorough assessments to show the functional impact of the disability — which is what the NDIS funds — and this is a complicated process.

In a diagnostic guide for health professionals published in 2016, the authors described FASD as a hidden harm because it is so under-recognised.

The authors, from the University of Western Australia and the University of Sydney, noted that health professionals were often unaware of how to diagnose FASD or where to refer patients for diagnosis or treatment.

Barriers to diagnosis

As well as FASD being under-recognised by medical professionals, another barrier to diagnosis was the stigma associated with the disability.

“Doctors feel they don’t want to burden Mum if there is nothing that can be done for the child because the brain injury is irreparable; it’s irreversible,” Ms Russell said.

“But there is so much that can be done through early intervention. You can access specialists, therapists, and really improve the life of a child.”

Although there were limited diagnostic clinics in Australia, this should not stop parents from seeking a diagnosis.

Ms Russell said if a child was under the care of a paediatrician, parents should push for a diagnosis, and if they felt nothing was happening they should get a referral to another paediatrician.

“It is absolutely critical to get a diagnosis. It’s not just about that one child; a diagnosis is also a prevention,” she said.

“If my older son had been diagnosed, my younger son would not have FASD because presumably I would have found out what the reasons were for my son’s issues and not used alcohol during my second pregnancy.”

Poor access to FASD professionals

Julie Irwin is the chair of the newly formed FASD Central Queensland Alliance and said many children were going undiagnosed.

“It would have to be in the thousands; there is no doubt about that,” Ms Irwin said.

She said that at one high school in the region the principal suspected 70 per cent of his students had FASD.

The cost of getting to a clinic in the state’s south-east corner was prohibitive for most people, and the barriers for people living in regional areas went beyond the financial difficulties.

“It’s actually also getting assessments from health professionals before they can go down there and get the diagnosis,” Ms Irwin said.

“There’s a whole process that’s extremely lengthy and costly and it’s unaffordable and out of reach for so many families in this particular region.”

The alliance is raising awareness about FASD, and is working towards training central Queensland paediatricians and health professionals with a view to eventually having an FASD clinic in the region.

“We do need funding from the Federal Government to do this, to expand the services that the paediatricians offer,” Ms Irwin said.

“That’s certainly a barrier but it’s an area of great need.”

Dr Sunday Pam, a paediatrician at Central Queensland Health in Rockhampton, will be heading to the Gold Coast clinic next month for specialist training.

He agreed that diagnosis was a lengthy and complicated process, particularly for children with difficult behaviour as a result of the condition.

This often presented as ADHD or Oppositional Defiance Disorder and a skilled team of psychologists, occupational therapists and speech therapists needed to work together with a paediatrician to make a diagnosis.

The absence of a specialised clinic in the region was disadvantaging families and creating bottlenecks.

“Many of the kids are not diagnosed, and many of the kids lose out on the opportunity to find the necessary support,” Dr Pam said.

“If you don’t make a diagnosis, you can’t get a full assessment from an allied health team and they cannot have any complete documentation to take to NDIS.”

It is even more difficult for those from lower-socio-economic backgrounds to get access.

The waiting lists for each health professional in the public system can be at least six to 12 months through the public system.

Impairment funded, not diagnosis

A spokesperson from the NDIS said the health system remained responsible for the diagnosis of health conditions, clinical treatment and supports, as well as nursing care, rehabilitation and palliative care.

The NDIS funds the reasonable and necessary disability-related supports for people to increase their social and economic participation.

“Supports may include personal care and support, access to the community, therapy services and essential equipment,” the spokesperson said.

“A person will be considered eligible for the NDIS if, due to their impairment, their ability to undertake or participant in tasks such as communication, social interaction, mobility, self-care, learning and self-management is significantly impaired.”