Sandie's Story: WA Health's child-to-adult service transition failures

Meet Sandie, a mother who has faced incredible challenges in securing proper healthcare for her son, Luke, who has experienced refractory epilepsy.

In this video, Sandie shares a heart breaking story of inadequate services during the transition from children’s to adult healthcare in Western Australia. This resulted in Luke’s deteriorating health, missed education opportunities, and their family being split across Australia while waiting for his much-needed surgery far from home (Sydney, NSW).

For years, Luke endured 10-20 seizures a day, all while a much-need surgery was delayed four years as he was pushed from the pediatric to adult healthcare system without adequate care. Even though hemispherectomy surgery, which could have stopped his seizures, was available for children, it wasn’t offered when he transitioned to adult care in WA.

It’s time for WA Health to listen to families and implement real change for people with intellectual disability and other developmental disabilities. Sandie is calling for urgent action from WA Health to provide specialised care and transition services for people with intellectual disabilities. Families should not have to face this unnecessary hardship. Sandie believes if the surgery had been available earlier in WA, it would have saved Luke from years of damage and improved his quality of life.

Sandie’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]

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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.