Epilepsy fails NDIS funding criteria because it's not considered a disability, and these families are suffering

Adeline Hanna is a playful little girl with a cheerful sense of humour.

Her mother, Jessamy Eccles describes her as "creative" and says she likes to pretend she owns a coffee shop and serves drinks to people. 

But at almost seven years old, Adeline is intellectually delayed for her age.

"Adeline is very impulsive, it's like being with a toddler," Ms Eccles said.

That’s because Adeline has epilepsy and consequent brain damage, triggered by a meningitis infection when she was three.

She has what’s known as a rare developmental epileptic encephalopathy that mainly affects children and is characterised by cognitive and behavioural problems.

Barrier to support

It's both an exhausting and expensive condition for the family to manage.

They had hoped to get support from the National Disability Insurance Scheme (NDIS) to make life easier, but under existing rules, Adeline can't access NDIS funds.

"They [NDIS] want to prove that it's permanent, which is difficult because [the doctors] can't say it is permanent," Ms Eccles said through tears.

"The damage that it's done already ... it's not going to get any better.”

Before the seizures, her mother said Adeline was a calm little girl developing at a normal pace.

But she now has repetitive behaviours, memory issues and frequent meltdowns characteristic of her epilepsy.

Epilepsy is not generally considered a disability, but rather a medical condition that should be treated within the traditional health system.

The NDIS doesn't offer funding for epilepsy unless the person already has a disability.

Adeline has never been diagnosed with a disability, but her family says her cognitive impairments means she functions like she has an intellectual disability.

"[Epilepsy] is seen as medical and not classified as permanent. That's the issue," Ms Eccles says.

A NDIS spokesperson said access to support was always assessed individually, and there were no automatic exclusions.

“While a health professional may recommend certain supports, we don’t always fund all of them,” the statement said. 

“This does not mean that it isn't a support which may help a person — it means that it isn't a support which is reasonable and necessary, against the criteria in the Act, for that individual.

“Many participants have medical conditions they manage alongside impairments arising from their disability.

“When a participant’s impairments impact on their ability to manage their medical conditions, the NDIS may fund supports to assist them in managing those conditions."

But that hasn’t happened for Adeline who needs interventions like occupational therapy and speech therapy to manage her complex conditions.

"Her cognitive function, attention deficit, her intellectual impairment they are not necessarily going to come back. Especially not without therapies,” Ms Eccles explains.

Autism opens door for epilepsy funding

The Ridout family also knows what it’s like to be rejected by NDIS for lacking a diagnosis.

Their nine-year-old son Leo has the same type of epilepsy as Adeline as well as autism, which is often associated with epilepsy.

It took more than a year of trying until Melanie and Brad Ridout were able to get their son help through the NDIS – and it only happened after a clinical psychologist diagnosed his autism.

Melanie said it was difficult to get that diagnosis because Leo’s symptoms were obscured by the epilepsy and medication.

“Everything changed overnight … every opportunity opened up to us,” Melanie said. 

“Our son now has an autism diagnosis, he just received NDIS funding … even though his functional needs were just as severe.”   

Funding delays cause problems

Epilepsy Foundation general manager Nicole Coulthard said it was not easy to get NDIS support for epilepsy.

“One of the key requirements is having a permanent and lifelong disability — epilepsy can be seen as episodic,” she said.

Ms Coulthard said delays in accessing therapies could cause significant problems for people.

“NDIS are waiting for people to have cycled through every one of the available medications, trying to see if something is the miracle cure, before they're prepared to accept that it is a permanent condition," she said.

“They're going back and forth, spending a lot of time, and often creating delays for access to services that are really going to help” 

NDIS review doesn't change epilepsy

NDIS legislation was recently reviewed, but no specific mention of changes to epilepsy support was made. 

One change in the phrasing of NDIS funding support criteria is that a disability must be directly linked to a person's impairment.

The agency maintains it is "not designed to replace health services", and "people with chronic health conditions should continue to be treated by the health system.’”

Adeline’s mother is determined not to give up.

“I get upset about it because I just want her to have the ability to get the intervention and support that she needs,” Ms Eccles said.

“It also just feels very frustrating … she's got all these health professionals saying that she needs it.

“I'm not sure what we will do next, but we're going to do everything that we can.”

Editor’s note: The ABC has not used Leo’s real name, at the request of the family.