As an Autistic person with Diabetes, Justin’s story highlights the significant challenges he faces to within the WA Health system. This isn’t just a story – it’s a clear call for urgent health reforms in WA to improve services for people with intellectual disability and other developmental disabilities, like Autism.
watch Justin’s story on Vimeo here: https://vimeo.com/1053255423
Justin: as a person with disability trying to get health services
– poor experiences with WA Health
Meet Justin: he’s a 27-year-old living with Autism and Type 1 Diabetes. For him, managing Diabetes is a challenge. Juggling different foods, finger pricks, and the struggle to keep his levels under control is overwhelming. Forgetting to administer insulin happens a lot, which is why support workers play an important role in reminding him.
A major hurdle for Justin is attending the Diabetes clinic. The distance and lack of transportation options make it problem. Hospitals need to be more flexible and adapt to peoples’ needs, offering appointment times that suit them and providing lots of time for them to get there.
Appointments are particularly stressful for Justin, as new medications and unfamiliar terms increase his anxiety. The lack of communication and understanding from healthcare providers is frustrating. Asking questions like “Do you understand the terms?” or “Do you need any clarification?” would make a big difference.
Filling out forms is another obstacle for Justin. The complex language and confusing wording make it difficult for him to understand. Easy Read formats would help him gain knowledge and better understand the questions being asked.
Justin emphasises the importance of clear communication. Often, conversations with doctors feel like talking to a brick wall, he says, with his concerns falling on deaf ears. Support from others in writing things down would help reduce stress.
Throughout his life, Justin has faced downgrading and misunderstanding. He asks for people in healthcare roles to slow down and talk to him like a normal person, treating him as an adult rather than a child.
Justin’s story is part of DDWA’s “Time For Action! Health Reforms in WA” campaign. This campaign calls for urgent healthcare reforms for people with intellectual disability (PwID) in WA, especially in light of the upcoming election on 8 March. Specifically, the WA Health Department needs to do five things to make a real difference:…[see below]
We need the WA Department of Health to do FIVE (5) things:
- Introduce mandatory training on intellectual disabilities for all health staff.
- Set up Specialist Disability Health Hubs in each health region to improve the health and mental health of PwID.
- Ensure the State health plan includes PwID as a priority group.
- Introduce a “flag” to identify intellectual disability in a person’s WA health record.
- Contribute to a WA Easy Read website that provides key public information about health and other government services.
As the election approaches, DDWA urges all political parties to commit to these reforms. Contact your local member of parliament and demand better health services for PwID. To find your local member, go to: https://www.parliament.wa.gov.au/WebCMS/webcms.nsf/content/contact-a-member
Shane Love, leader of The Nationals WA, has already committed to two key reforms. We are asking other parties: What are your policies, WA Labor, Liberals WA, The Greens WA, and independents?
For more information, watch Georgie’s story and learn about the pressing need for change: https://vimeo.com/1053252462.
Our campaign began with a video message from our CEO, Mary Butterworth, outlining the challenges faced by PwID in WA health services, followed by a list of “5 things we need the WA Health Department to do” (see the 5 things listed, below)
- Read related news here: Time for Action! Health Reform in WA
Our campaign includes a showcase of videos where people with disabilities and their families share their experiences with WA health services. It’s heart breaking.
The campaign will run throughout February and beyond on all our digital platforms, including social media, newsletters/emails, and here on our DDWA website.
WATCH VIDEOS in Showcase HERE: https://vimeo.com/showcase/10795019
