Canberra family of four-year-old with brittle done disease says he slipped through the cracks and missed out on daycare
A Canberra family has opened up about the challenges they have faced accessing early education for their son who was born with a rare brittle bone disease. They are hoping their story will prompt the federal government to fix its so-called tailored support program so children with complex and high needs aren’t excluded from a fundamental stage of learning.
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00:00 Starting preschool was a big moment for Finn Johnson and his family.
00:07 He comes home and he is so happy. He talks about his friends, about playing.
00:12 Finn was born with osteogenesis imperfecta, a rare condition that means his bones break easily and often.
00:19 At just four and a half, he's already endured more than 20 fractures.
00:24 I got that scar, and that scar, and that scar, and that scar.
00:30 Wow!
00:31 And a scar on my bum.
00:33 When Finn was two, his parents enrolled him in daycare.
00:37 For the centre to cater for his needs, it needed funding from the federal government's inclusion support program.
00:43 Most important for Finn was one-on-one support to minimise his risk of fracture.
00:48 It's really important for somebody else to be there.
00:51 While the funding application was processed, Finn's parents supervised him at the centre, draining their carer's leave.
00:58 Two months and no progress later, they had to pull the pin.
01:02 Finn was devastated. He sobbed and we'd drive past the centre regularly and he'd ask us when he was going back to big school like his brother.
01:11 Eight months after that, the application was formally rejected.
01:15 That meant that the inclusion support program was neither inclusive nor supportive.
01:22 The Minister concedes the program isn't fit for purpose, and it should be.
01:27 I am 100% committed to this, and Finn's case is just one of many cases that I've heard.
01:36 Finn's pathway to preschool has been much more accommodating,
01:40 despite his attendance requiring a bathroom renovation, playground upgrades and a classroom overhaul.
01:47 All of which came with a hefty bill that the ACT government footed.
01:52 It's worth every dollar because to see his joy and for him to have his first experience at preschool is really, really important. You can't replace that.
02:00 An important milestone for a boy who has missed out for far too long.
02:05 [BLANK_AUDIO]