Genetic Webinar Series - Session 3: Navigating Systems

Feeling overwhelmed by systems after your child’s diagnosis? You’re not alone. From the NDIS to health and hospital systems, it can be hard to know where to start or how to navigate the journey ahead. This session offers practical guidance to help you feel more informed and prepared to support your child’s daily life.

We’re joined by an experienced NDIS navigator who specialises in helping families access and navigate supports, along with a parent who brings the lived experience of walking this path with their child and family.

We explore
• How to apply for the NDIS and navigating reviews
• Working with health professionals and services
• Coordinating care across multiple systems

About the Speakers

Lauren Buck, NDIS Navigator

Lauren Buck is the NDIS Navigator at the Mito Foundation, which supports people affected by mitochondrial disease. In her role, she empowers individuals and families to access the NDIS, understand their rights and options, and advocate for the support they need. A qualified Occupational Therapist, Lauren has worked across government, private, and not-for-profit sectors, including as a Manager for an NDIS Early Childhood Partner.

Nika Kulaweera, Clinical Nurse Specialist

Nika is a Clinical Nurse Specialist with over 10 years of experience in paediatric nursing. For the past 18 months, she has been involved in the development and initiation of the Navigator Project - a 3-year pilot program providing nurse-led support to children and families affected by rare diseases, with particular focus on vulnerable populations. Her work involves connecting families with accurate information, relevant resources, and research opportunities, and supporting access to NDIS services.

Helen Johnson, Parent Speaker

Helen is a parent of a son who was born with an extremely rare syndrome causing multiple severe and profound disabilities. He became a paraplegic in 2009 due to a spinal cord injury following a post-operative complication. Helen has decades of experience as a family carer and has worked with the Association for Children with a Disability since 2004 as a Support Advisor and Community Education Facilitator. She is Vice-President of Carers Victoria, a National Carer Ambassador with Carers Australia, and a facilitator for the Healthy Mothers Healthy Families program.

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Belongside Families provides general information, peer support, and shared lived experience— we do not provide medical/professional advice or counselling. Any information shared during the event is intended to support and empower families and should not be considered a substitute for professional advice or care. Funded by the Australian Government Department of Social Services. Visit www.dss.gov.au for more information.