Health policy consultants Human Capital Alliance (HCA) were engaged by the ACT Government to develop a resource package for consumers with disabilities. The package will facilitate the process of consumers with disabilities and their family or carers to work alongside healthcare workers to promote timely access to evidence-based healthcare and to help to avoid preventable harm. The particular risks faced by people who have difficulties with communication are a core focus for this project, but the resources will be useful for a wide range of people with disability.
A working group of volunteers from the People With Disabilities ACT (PWD ACT) membership and the PWD ACT Health Project Officer have worked with HCA staff to consider a wide range of national and international best practice resources and are finalising the proposed structure and content of a resource package to meet the needs of ACT consumers.
The package has capacity for personalisation in ways that will promote communication with healthcare providers and has three parts:
- a section that contains core health and relevant social information (including prompts for supported decision-making) and routine prevention-focused health care (primary care)
- a section that is more like the health passports that are widely used in the United Kingdom and elsewhere for hospital admission and discharge procedures (where evidence shows there are major risks to be mitigated, particularly for those who experience difficulty with communication), and
- a section on health system navigation and health literacy promotion (eg tips on access to primary care and information on evidence-based tools such as the CHAPS tool from the University of Queensland that prompts GPs to proactively monitor a range of known health risks for people with disabilities).
The package has been designed to be downloaded, printed and used flexibly and cheaply by health care consumers according to their particular needs. This resource will be made available online soon. To keep in touch with the project and be informed when the resource is published go to …
‘It can be hard to let health workers know what you need, especially if you have complex needs related to a disability or long-term condition. A Health Passport is a booklet you can carry with you when you go to hospital or when you use other health and disability services, such as your GP or a new carer. It contains the information you want people to know about how to communicate with you and support you.’
It has been a privilege for HCA to work with the working group and ACT Government officers to develop this resource. HCA first undertook a literature search which allowed the working group to examine a wide range of example health passports from Australia, New Zealand, the UK, the US, Canada, Ireland and Hong Kong.
These examples were then considered against a range of evidence-based health and safety risks faced by people with disabilities to come up with a tight set of key points that should be included in the ACT passport resource. Those risks include the same risks faced by the general population, such as those related to the processes of admission and discharge from hospital and the need for active involvement in preventive health care.
The evidence shows that people with disabilities are disproportionately affected by these risks, so a good health passport tool has the potential to make a big difference. The resource package also recommended the inclusion of strategies for increasing consumer and carer health system literacy as well as best practice approaches for ensuring inclusion in informed consent processes.
HCA believes that the ACT vision for enabling good partnerships between consumers and carers and health care workers and for a passport resource that supports the full spectrum of health care puts it at the forefront of work being undertaken in this space. We wish them all the best with publishing the resource and gaining the likely benefits it will bring to the ACT health system and its consumers and providers. Contact HCA’s Senior Consultant and content leader in disability, Debbie Stanford, for more details.