The Caring Role
Caring for a person with cerebral palsy — whether as a parent, partner, sibling, or other family member — is a role that can bring deep connection, purpose, and joy. It can also be physically demanding, emotionally exhausting, and financially challenging.
Many carers report that the hardest part is not the physical care itself, but navigating systems (NDIS, health, education), fighting for services, and the lack of understanding from others.
Looking After Yourself
You cannot pour from an empty cup. Carer burnout is real and common. Strategies include:
- Acknowledge your feelings — grief, frustration, guilt, love, exhaustion — all are valid and normal
- Seek your own support — counselling, peer groups, or simply talking to someone who understands
- Maintain your health — regular GP visits, exercise, sleep, and nutrition
- Stay connected — isolation is one of the biggest risks for carers. Maintain friendships and social connections
- Accept help — when others offer, say yes. Be specific about what you need
- Take breaks — respite is essential, not optional
Respite
Respite gives carers a break while ensuring the person with CP is well cared for. Types include:
- In-home respite — a support worker comes to your home
- Centre-based respite — short stays at a respite centre
- Community access — the person with CP goes out with a support worker
- Holiday or emergency respite — for planned breaks or unexpected situations
Respite can be funded through the NDIS (as part of the participant's plan) or through the Commonwealth Respite and Carelink program for carers not on the NDIS.
Carer Support Services in Australia
- Carer Gateway (1800 422 737) — the national entry point for carer services. Provides counselling, coaching, peer support, and emergency respite
- Carers Australia — national advocacy body for carers, with state and territory branches
- Carer Allowance — a government payment for people providing daily care (income-tested)
- Carer Payment — a higher payment for people whose caring role prevents them from working (income and asset-tested)
- Young carers programs — support for siblings and young family members in caring roles
Siblings
Siblings of children with CP have their own unique experiences and needs:
- They may take on caring responsibilities beyond their years
- They may feel overlooked when their sibling requires more attention
- They often develop remarkable empathy, resilience, and advocacy skills
- Open communication, dedicated one-on-one time, and sibling support programs help
- Organisations like Siblings Australia provide specific support and resources
Relationships
The caring role can put significant strain on relationships:
- Partners may have different coping styles or disagree about care decisions
- Time and energy for the relationship itself can be scarce
- Financial stress is a common pressure point
- Couples counselling can be helpful — some services specifically cater to families with disability
Looking after yourself is not selfish. It is the most important thing you can do for the person you care for.