A NSW Government website

Parent and carer advocacy

Advocacy means speaking up for your child to make sure they get the right care and services they need.

As a parent or carer of a child with medical complexity, you play an essential role in advocating for your child's health and well-being.

This information is about how parents and caregivers can speak up for themselves and their loved ones. The information includes the REACH protocol for NSW Health and ways to become stronger advocates or get help with speaking up. It also includes links to advocacy groups for caregivers and people with disabilities.

Raising concerns using REACH

Parents are encouraged to speak up if they have any concerns about their child's health. They have the right to be heard and listened to.

REACH is a step-by-step process to raise concerns if you notice a worrying change in your condition of your child.

For more information: REACH – Patient and Family Activated Escalation | HNE Health(nsw.gov.au)

The HNE Local Health District REACH contact numbers are here for parents and carers.

Building skills and getting support to self-advocate

If you find it difficult to speak up or want to get better at advocating for your child, there are helpful tips and support available. Strengthening your ability to self-advocate means learning how to stand up for your child's needs. You can build this capacity by:

  • Educating yourself about your child's condition and treatment options.
  • Learning about your child's rights and entitlements.
  • Building relationships with your child's healthcare professionals.
  • Connecting with other families who have children with similar conditions.
  • Practicing communication skills, such as assertiveness, active listening, and negotiation.
  • Seeking support from advocacy organisations, support groups, or counselling services.

Carer Gateway provides coaching and online lessons to help parents and caregivers build their skills, including advocacy. Kindred also offer support and resources.

Advocacy organisations

There are many groups that help and support families with children who have complex medical needs. Some of these organisations include:

  • Carers Australia: Provides information, advice and support to carers across Australia.
  • Family Advocacy: Provides support for the rights of people with intellectual disability and their families.
  • Disability Advocacy NSW: Provides advocacy services for people with disability in New South Wales.
  • The Raising Children Network: Provides information for families of children with disabilities.
  • The Benevolent Society: Provides help for families, including support and advocacy for children with disabilities.
  • Health Consumers NSW: Provides information and tools for parents and caregivers. They help people understand how they can use their own experiences with healthcare to make the health system better.