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Getting access to the right health care can be a challenge for anyone, especially if you have barriers that limit your ability to communicate to health professions about your needs.
That’s why Mater Intellectual Disability and Autism Services (MIDAS) have launched the EASY-Health (Enhancing Access to Services for Your health) project - a project designed to improve the accessibility of hospital services to those with disabilities by improving the knowledge, skills and attitudes of health professionals towards people with disabilities.
Mater clinician and Queensland Centre for Intellectual and Developmental Disability (QCIDD), The University of Queensland researcher Dr Cathy Franklin wants to led the positive change in health and hospital services. “We hope that this project will open everyone to the care they deserve without the limitations and barriers that have previously stood in the way and give people with disabilities a platform to advocate for themselves about the best ways to provide this care.”
Studies show that people with an intellectual or developmental disability experience poorer health outcomes and have a lower life expectancy than the general population, by up to thirty years. This is often because it’s simply more difficult for them to access health care, and because the systems are complicated and hard to navigate, they get left behind. For example, someone with a borderline or mild intellectual disability or a level 1 autism diagnosis are not automatically eligible for the National Disability Insurance Scheme (NDIS) and must go through a process to demonstrate their eligibility.
One of the central focuses for the EASY-Health project is educating health professionals on better ways to communicate with patients; giving them more time to listen, and not make them feel rushed or like they aren’t being taken seriously. Medical professionals will be given opportunities to upskill and learn about the small adjustments they can make to better meet the needs of their patients with disabilities.
Sadly, negative attitudes towards people with disability persist in the medical community, and we hope that by including more people with disabilities in the project we can break down these barriers and create a more cooperative system for both patients and their treating clinicians. Mater and Mater Intellectual Disability and Autism Service (MIDAS) have employed the help of new staff member, Catrin Culla, to help with administration of the project as well as to act as a consultant. Catrin has Down Syndrome and her experience with living in a world not built for those with one, will be invaluable in creating documents and policies that are clear and understandable for everyone.
“People with disabilities have the same healthcare needs as others, but more importantly, they have the same right to access health care as others,” said Catrin.
Past studies such as ‘Doing it together’, British Journal of Learning Disabilities, show when people with intellectual disability are directly involved in research, participants share more as they are more comfortable talking with a peer - someone who knows where they are coming from.
The EASY-Health project has three stages that will run over the next three years. Firstly, the team will interview people with intellectual disability and their support people to gather information about the issues facing these patients and work together to identify solutions. Then they will review what tools, resources and training exist and modify existing solutions to better serve the community. The final stage—implementation and evaluation—will occur to ensure that these solutions provides the most support.
Throughout the project, the team will work with people with intellectual and developmental disability to ensure what that the work that is done reflects those in need.
Visit the MIDAS website for more information.
Funded by the Australian Government Department of Social Services.
Visit dss.gov.au for more information.
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