Early connections make a difference

Kaayan was diagnosed with Angelman Syndrome when he was 2 years old. This genetic condition causes neurological symptoms, including intellectual disability, distinctive facial features, speech delay and movement and balance problems. Sadly, Kaayan is not eligible to receive funding under the National Disability Insurance Scheme (NDIS) due to his visa status. In 2022, our Early Childhood Service, Therapy Services and Fundraising team worked together to find a way to provide Kaayan and his family with vital early intervention services and support.

Early Childhood support

Our Early Childhood team supports families with young children with disability or developmental delay to access NDIS funding and link with support and services. When a child is ineligible for funding, our team links their family with services, information and other referral pathways so they can get the support they need. For Kaayan, this meant referrals to the local community health team where he could access some occupational therapy and physiotherapy sessions free of charge as well as receive grant funded lower body equipment to assist with balance and posture development. Our team provided Kaayan’s mother Yojana with information about the Inclusion Support Program in preschools, and helped with placing Kaayan on the preschool waiting list. The family was also linked to support to help with their visa application and advocacy for Medicare services. Their Northcott Early Childhood Coordinator also passed on information about transitioning to kindergarten and available support for Kaayan.

Therapy support

Kaayan was also linked to Northcott’s Fundraising and Therapy teams who nominated him to receive therapy services free of charge, thanks to donations from our generous community of partners and supporters. The occupational therapy, physiotherapy and speech therapy he has received throughout 2023 have had a positive impact on his development.

“The strategies the Northcott therapists have given me for mobility, for his attention, for his feeding are really helpful. Compared to last year, Kaayan is now standing, holding onto support. He is walking around with support. Before he was just taking a few steps, but now if he can hold on, he will go everywhere. He has also started eating finger food by himself … and has become more expressive than he was last year,” his mother explains.

Dianne – Kaayan’s physiotherapist
“I’ve been supporting Kaayan with his mobility goals via telehealth. Joseph, a Northcott Allied Health Assistant, has been following through with occasional home visits to encourage greater independence in walking with minimal assistance at home. We hope to extend the opportunity to support Kaayan at day care so he can get consistent support at play during his days at home and with his peers.”

Jiwon – Kaayan’s occupational therapist
“Kaayan had three occupational therapy sessions at his home from June-July 2023. The occupational therapy goals for Kaayan and his family are to improve his fine motor skills so that he can enjoy activities with different toys. Improved fine motor skills will also enable Kaayan to be independent with his self-care activities such as eating. Kaayan is currently learning how to grasp blocks, makers and squeezy balls. Direction and guidance are provided to his mother to continue those plays throughout the week.”

Sereena – Kaayan’s speech pathologist
“Kaayan and his family have been receiving speech pathology intervention via telehealth. Play skills such as acknowledging any form of communicative intent and joint attention have been used to build on and develop Kaayan’s communication. A combination of parent training and occasionally in-person allied health assistant sessions have been conducted to support with his play and communication skills. Kaayan’s family have done an amazing job in supporting him with his development.”