Ashleigh and her Mum (Lisa).
Five years ago, Lisa met Theresa Kirwan, a dedicated Senior Occupational Therapist, Positive Behaviour Support Practitioner and Deafblind Consultant. Theresa took the time to understand her daughter’s complex needs and provided “life-changing” support.
“There are very few professionals you can pour your heart and soul into, and they totally get it. Theresa is one of those people. She understands the day-to-day complexities and the struggles,” Lisa said.
Ashleigh is a happy twenty-three-year-old who enjoys getting out in her community. She lives with CHARGE syndrome, cerebral palsy, deafblindness, , and communicates in Auslan.
“My daughter is very complex, but her biggest disability has been accessing language. I’ve had to fight and advocate for access to Auslan services. There are not enough support workers that know Auslan and can immerse themselves in Ashleigh’s world,” Lisa explained.
Ashleigh getting out and about in her community.
Lisa is especially grateful for Theresa’s advocacy, which has improved Ashleigh’s communication abilities and connection with the community. Theresa linked Ashleigh with Cindy, an Auslan-speaking Support Worker, Communication Guide and 2023 NDS Award Winner. Cindy helps Ashleigh get out into the community.
“Theresa has gone above and beyond advocating for Ashleigh, educating other professionals in the healthcare system about deafblindness and CHARGE Syndrome, and promotes better access to Auslan (Australian Sign Language),” Lisa said.
Ashleigh and her Therapist, Theresa Kirwan.
Committed to excellent care, Theresa took the initiative to learn more about CHARGE Syndrome – a rare and complex syndrome involving medical and physical difficulties that vary from person to person. She will present at the 2024 Australasian CHARGE Syndrome Conference in Sydney.
CHARGE Syndrome results in multisensory impairment, including deafblindness. This affects all life areas, including health, orientation and mobility, activities of daily living, communication, socialisation, and access to information.
“When you understand the way CHARGE Syndrome impacts on Ashleigh, then you can develop strategies to meet her unique needs, and better support her to have a good life.
“It’s important for Ashleigh to have people around her that communicate in Auslan, so she can be understood and can understand what is happening,” Theresa said.
Theresa and Lisa at the NDS WA Disability Support Awards Ceremony 2024.
In 2024, Theresa was named Finalist in the Excellence in Rights Promotion category of the NDS Western Australia Disability Support Awards, a nomination put forward by Lisa.
“From a family point of view, we were exhausted. Theresa came on board and found a way to work with Ashleigh and the people around her. This level of engagement I have never seen in many professional people. It truly has been life changing for us all,” Lisa said.
“Theresa is the glue that keeps it all together. She fights for the rights of people who are deafblind, and (facilitating) access to language, and has been successful chipping away all the barriers, improving Ashleigh’s access to the community.” Lisa added.
Theresa continues to provide invaluable support and thrives when working with individual with complex needs.
“For me, the greatest honour and source of satisfaction comes from the rapport and trust I have with Ashleigh, Lisa and her support network. It’s the clients with complex needs and the collaborative, client-centred teamwork within the therapy team that keeps me coming back to SensesWA each day.” Theresa said.
For more information about SensesWA, visit senseswa.org.au or call us on 1300 111 881.
