She is a vivacious young girl, who loves drama class and learning how to act.

Long summer holidays are drawing to a close and Telejah is, like many studious young people, itching to get back into the classroom.

There is one thing that makes Telejah different from her peers – she lives with cerebral palsy and attention deficit hyperactivity disorder, more commonly known as ADHD.

Telejah has a love of learning and doesn’t let her learning difficulties and physical disabilities stop her from participating fully in her education.

But she has had a hard road to get there and is one of a growing number of students living with a disability who have been “failed” by the system for being, as disability education lobbyist Kristen Desmond puts it: “not disabled enough”.

However, a new funding agreement reached between the state and federal governments aims to turn the tide on the “broken” system to provide new support for those who need it.

The national agreement will see $490 million in funding flow to Tasmanian schools to support students with a disability.

It will move the state away from the existing IQ-based funding model, to a needs-based model, to support teachers and schools to provide learning adjustments.

In Tasmania, disability funding support for students is based on an IQ test, with support given to students who rate 50 IQ points or below.

Tasmania is the only state to record the IQ test at this point, with other states putting students on the Severe Disabilities Register if they record an IQ of 70 or below.

Telejah’s grandmother Bronwyn Bowen, who is her primary carer, said support for young people living with a disability was in need of an urgent overhaul.

She said because of the IQ-based funding model, many children like Telejah “fell through the cracks” because they were not considered eligible for funding.

“She [Telejah] is not dumb, but she can’t physically hold a pen, so a lot of her teachers didn’t know how to support her,” Ms Bowen said.

“Can you imagine the difference in her if she’d received support from the start?”

While Telejah does have difficulty speaking, due to the symptoms of her illness, she can make herself understood – if people take the time to listen.

Telejah was born with cerebral palsy, and doctors told her parents that she’d never walk or talk. People with cerebral palsy have a life expectancy of between 30 and 70.

Despite being a dedicated student, Telejah’s road through school has been a bumpy one.

“She started having the seizures when she got involved in a production,” Ms Bowen said.

This new symptom emerged while Telejah was enrolled at a Launceston primary school, where she was bullied by peers and misunderstood by staff.

Ms Bowen said Telejah’s teachers were not given the right tools to understand how to teach her and, as a result, gave her failing marks.

She said the reason for Telejah’s bad grades was not because she couldn’t grasp the work, it was because of a physical disability.

“Telejah needed more support, she couldn’t physically pick up a pen,” Ms Bowen said.

Due to the combination of bullying and her grades, Telejah’s family removed her from the primary school and looked for an alternative.

But they discovered that finding another school to take their daughter, or granddaughter, would prove difficult.

Many schools told the family they “didn’t think they were the right fit” or were unable to support Telejah in the way that she needed as she wasn’t eligible for funding.

“We even approached a private school – we couldn’t afford to send her to private school, but we tried because we were desperate,” Ms Bowen said.

Tasmanian Disability Education Reform Lobby founder Kristen Desmond said the experience of the Bowens isn’t an uncommon story.

“Parents [of kids with disabilities] are often pushed to different schools, it is made clear that the school doesn’t want their child,” she said.

The issue permeates through the public and private education sector and there’s one thing that it comes back to – access to funding. Ms Desmond said she had also been told stories of kids that had been asked by the school to stay home during NAPLAN testing – because they would affect their scores.

She said schools and the government had a history of being reactive when it came to supporting students with a disability.

“Funding by itself is not enough, but the funding has to be ongoing and we may find kids will dip in and out of the funding,” she said.

“It’s not the only piece of the puzzle.” Ms Desmond began the reform lobby following her experiences through the education sector with all three of her children, who all have difficulties and are on the autism spectrum.

She said she found herself one day “blubbering in the principal’s office” because she couldn’t get anyone to listen.

“I think of myself as a pretty strong person, but the system broke me,” she said.

“I thought then and there I didn’t want to see another family have to go through this.”

She has been lobbying for a needs-based funding model for several years and welcomed the new funding agreement made between the governments.

However, she warned that the agreement would need to be fully needs-based to ensure it met the needs of students with disabilities.

She said she would be waiting anxiously to find out more details on how the funding will be rolled out and how it would be enforced.

Professional development for teachers is needed immediately to assist them in delivering learning plans for students with disabilities, Ms Bowen said.

She also said she had concerns over how the new funding model would be enforced.

“I know the government doesn’t have an endless supply of money, but we need to make sure that these kids are being supported,” she said.

An Education Department spokesman said the new funding model would move away from the existing system but all supports would remain in 2019.

“It will align funding to the adjustments actually needed by students and made by teachers to ensure access to an appropriate teaching and learning program.”

The spokesman said the change would align Tasmania with other states and ensure a nationally consistent approach to supporting students with a disability.

Support for students and the roll out of the program will be finalised throughout 2019, with the new needs-based funding model to begin in 2020.

“This year work will focus on refinement of the model based on feedback from consultation and quantitative analysis, further testing of the proposed allocation methodologies and final refinement of funding allocations and implementation plans.”

Ms Bowen said she and her family considered homeschooling Telejah but didn’t want to take the experience of school away from her.

“It was seriously becoming one of our only options,” she said.

However, a decision was made for Telejah to move in with her grandmother at Bridport and enrol at Scottsdale District School – and they have never looked back.

Ms Bowen said the school had embraced her granddaughter.

Telejah has flourished at Scottsdale and can’t wait to head back to school this year and her symptoms have shifted.

“We don’t call them seizures, we call them dancing on the floor,” Ms Bowen said.