- Jeanie is a young girl who lives in a regional town with her family.
- She has a rare genetic disorder characterised by intellectual disability, distinctive facial features, and other congenital anomalies.
- Jeanie is blind, non-verbal, requires enteral feeds (tube feeding) and requires a wheelchair for mobility.
- English is her mum’s second language.
Pathway to Pillar Support Coordination
Jeanie’s family were referred to Pillar on recommendation from a service provider.
Key issues to consider
Complex disability, difficult access to services and supports, vulnerability to COVID.
Initial approaches taken by Support Coordinator (SC)
- Jeanie’s dad worked and lived in another town, leaving her mum with sole responsibility for her extensive care as well as the care of her toddler brother.
- SC focused on developing a relationship with Jeanie’s mum so that she felt comfortable discussing her needs and accepting supports.
- Together with her mum, SC ensured that Jeanie was receiving the supports she needed and had access to supports funded within her NDIS plan.
- This included physical therapy, aids and equipment, and access to support workers who could take Jeanie out for regular walks to give her mum a much-needed break.
- Keeping Jeanie protected from exposure to COVID was a constant consideration when accessing services and community.
- Once all supports were in place, SC assisted the family to begin accessing consumables and equipment through Jeanie’s NDIS plan instead of Perth Children’s Hospital. This involved compiling lists of needed supplies, identifying providers, and setting up on-line ordering accounts to help the family order easily when required.
- SC also worked with the family, the NDIA and therapy providers to assess areas within the home that may require modifications to assist the care of Jeanie at home.
Outcomes achieved
- SC provided ongoing and regular advice to help the family manage Jeanie’s NDIS plan and access funding for consumables.
- Prior to SC working with the family, they were not aware that Jeanie’s NDIS plan included funding for continence products and had been paying for these themselves.
- Stable and appropriate supports were put in place for both Jeanie and her family with regular caring breaks to assist in preventing carer burnout and keep the family strong.
The difference made
- Jeanie gets the supports and services she needs, while her family are better supported in providing for her care.
Next steps
Our Pillar Support Coordinator continued to support Jeanie with:
- Working with a local school to make it possible for Jeanie to attend school, make friends and participate more with her community.
*name changed for privacy reasons
