Major upgrades to support young boy with brittle bone disease highlight ISP issues

A Canberra family have shared the story of their four year old son Finn’s experience of “slipping through the cracks” when an application for inclusion support was denied. 

 

Finn lives with osteogenesis imperfecta (brittle bone disease) which means that every day experiences for many toddlers and preschoolers, such as tripping over or bumping into something lead to fractures. 

 

In his four short years Finn has experienced around 20 broken bones, has had eight major surgeries, and multiple drug infusions, as well as extensive time spent with occupational therapists and physical therapists. 

 

Finn’s family shared their story with The ABC to highlight the challenges they experienced in trying to get early childhood education for Finn when he was two years of age. 

 

While Finn’s family had “some really constructive conversations” about the modifications and support Finn would need to successfully integrate into a long day care setting, they faced some challenges when it came to the Inclusion Support Program (ISP).

 

The centre applied for ISP funding for Finn, and while they were waiting for it to be approved, each parent took carers leave to supervise Finn one on one and to provide the modifications he needed to safely participate in the program for two days a week. 

 

After two months, and with no carer’s leave remaining, his parents had no choice but to withdraw Finn. 

 

Finally, eight months later, they received word from the service that Finn’s funding application had been rejected, and that the ISP would not cover the requirements Finn needed.

 

“Unfortunately for Finn, that meant the program was neither inclusive nor supportive and he wasn’t able to attend early childhood education,” his mother shared with The ABC. 

 

“I think what was a shock for us was that Finn fell through the cracks. There were two strong systems there – in the NDIS and the Inclusion Support Program – that are dedicated to inclusion and participation and the answer from both was, ‘No, we can’t include Finn’.”

 

Finn’s family hope that by sharing their story they will draw attention not only to Finn’s case, but to many other children like him.

 

Ministerial support 

 

Federal Minister for Early Education, Dr Anne Aly, agreed that the ISP was “not fit for purpose” and that it needed to be. 

 

“I am 100 per cent committed to this and Finn’s case is just one of many cases I have heard,” Dr Aly told The ABC.

 

“I’m also concerned about children with chronic illnesses like type 1 diabetes and cystic fibrosis – I’ve spoken to parents of children with these conditions who are also locked out of ECEC.

 

“Every child should have the opportunity to access the benefits of ECEC, and I want to make sure that the doors of ECEC are open to every child.”

 

An independent review of the ISP conducted last year identified a number of failures, including critically that it “is not optimised to achieve inclusion”.

 

The Government, Dr Aly said, is “already looking at changes” based on the review. 

 

“This is long-term reform but we will be doing what we can in the short and medium term to ensure that children with additional needs are included in early childhood education and care.”

 

Finn is currently enrolled at Duffy Primary School in its preschool program, where he is said to be “absolutely thriving”. 

 

The school has made extensive renovations and adjustments to ensure Finn can be safely included, such as renovating bathrooms, updating the playground and making changes to the classrooms. 

 

“I don’t have an exact figure but I would say it’s hundreds of thousands of dollars, definitely,” deputy principal Arilia Abell said.

 

“It’s worth every dollar – to see Finn’s joy every day, walking through that door with a big, beaming smile.”

 

To access the original coverage of this story please see here.