Submission 1137

am writing to share my experience as the primary carer of three children with disabilities who have high and ongoing support needs. My caring responsibilities are extensive and continuous. I provide daily supervision, personal care, emotional support, transport, appointments coordination, advocacy, and management of disability-related needs. Caring is not something that occurs during set hours; it is a responsibility that continues every day and often throughout the night.

One of the greatest challenges I face is that I have no informal support network. I do not have family members who can step in to help, provide respite, or care for my children in an emergency. I also do not have friends who are able to assist with caring responsibilities. This means I have no opportunity for meaningful breaks, rest, or recovery from my caring role.

I also live with autism and have my own support

Submission 1137

needs. Managing my own disability while caring for three children with high support needs is physically, mentally, and emotionally exhausted. The constant demands of caregiving leave little time to look after my own wellbeing or attend to my own needs.

In addition to autism, I experience ongoing respiratory and breathing-related health issues. There have been times when I have needed medical assessment or hospital treatment but have delayed seeking care because I had nobody available to look after my children. The reality is that when you have no support network, even attending a medical appointment can become extremely difficult. Seeking emergency medical treatment can feel impossible when there is nobody to ensure your children are cared for.

This situation places carers like me in an impossible position. We are expected to continue caring regardless of our own health,

• Exhaustion, or circumstances because there is

• often no alternative available. As a result, many

• carers ignore their own health needs, delay

• treatment, and continue caring while unwell

• because they feel they have no other choice.

• The lack of respite and support has significant

• consequences. Continuous caregiving without

• breaks contributes to physical exhaustion,

• emotional distress, social isolation, and burnout.

• It affects not only the wellbeing of carers but

• also the stability of the people they support.

• When carers reach breaking point, the

• consequences can be devastating for entire

• families.

• Respite should not be viewed as a luxury. For

• many carers, respite is essential to maintaining

• health, wellbeing, and the ability to continue

• providing care. Without adequate respite, carers

• are placed at increased risk of burnout, mental

• health challenges, physical illness, and crisis

• Greater access to respite services.
• Emergency respite options for carers experiencing illness or crisis.
• Recognition of the needs of carers who have disabilities themselves.
• Better support for carers who have no informal support networks.
• Policies that recognise the cumulative impact of caring for multiple family members with disabilities.
• Improved access to flexible supports that allow carers to attend medical appointments and seek treatment when needed.

Submission 1137