Disabled people and survivors of abuse in care have helped shape a new suite of resources that encourage disability support providers to think about the difference meaningful records can make in people's lives.
Care records are the information organisations create and keep about a person while providing care or support. They can hold memories, explain important decisions, preserve connections, and help people understand their own life story.
The Royal Commission of Inquiry into Abuse in Care identified issues in recordkeeping practices across organisations responsible for creating, managing and providing access to care records. In response, we developed care recordkeeping guidance to help providers better understand their obligations and improve their practices.
The new “My Experiences Matter” resources are part of our wider work to improve care recordkeeping across the disability support sector. The resources include videos, posters and cards that highlight the importance of keeping person-centred care records.
A group made up of disabled people and survivors who are central to the Inquiry were involved through the project, helping to shape the messages and materials.
Together, they distilled the importance of recordkeeping into a simple but powerful insight:
Everyone wants to be understood. Records are more than paperwork. They are how people understand themselves, and how others understand them.
Keith Wiffin, a survivor who contributed to the project, says records can play a significant role in how people understand their lives and experiences.
"This work speaks to the vital importance of records and record-keeping. Records, despite often containing inaccuracies and deficiencies, can be mana-enhancing validation that sees a person as somebody, not nobody, and should be respected as a taonga."
The resources encourage providers to consider the lasting impact of the records they create and manage.
"Improving recordkeeping is not just about systems and processes. It is about protecting rights, strengthening safeguarding, and ensuring people are recognised with dignity and respect," says Carmela Petagna, General Manager Quality Assurance and Improvement at Disability Support Services.
"We are proud to have worked alongside survivors to help shape resources that place people and their experiences at the centre, and support providers to improve their recordkeeping practices."
We worked with disability-led creative agency All is for All, disabled people and survivors to develop the resources.
“It was important to bring the voices of survivors to the forefront,” says Grace Stratton Chief Executive All is for All. “We take seriously the responsibility of blending lived experience with creative processes, and are grateful to the group for their contributions. We commend DSS for their work developing this guidance.”
The My Experiences Matter resources sit alongside DSS's care recordkeeping guidance.
Find and download them here: My Experiences Matter: resources for providers