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Kylie Scott shares her story to promote disability inclusion

Disability advocate champions inclusive health care

December 2019

Kylie Scott shares her story to promote disability inclusion

Kylie Scott shares her story to promote disability inclusion

Kylie Scott is a passionate advocate for people with a disability, adding her voice to promote a more inclusive health care system.

This year, Kylie was named Sydney Local Health District’s Volunteer of the Year. She’s been a disability consumer representative for the District since 2016.

Kylie’s an in-demand public speaker and arts worker who runs her own business. She’s studied business administration at TAFE and a course at Sydney University. She lives in her own home at Zetland. She hosts dinner parties and loves to travel.

She also has Down Syndrome.

“It is described medically as a permanent cognitive communication impairment. That means that I have difficulty with comprehension and verbal communication and my social functioning is impaired,” Kylie said.

In her role as a disability consumer representative, Kylie’s provided advice to the District’s National Disability Insurance Scheme (NDIS) Governance Group and the Disability Action Plan Steering Committee. She’s also delivered presentations at many District events.

To mark the International Day of People with a Disability on December 3, 2019, Kylie will attend an in-house forum at Concord Hospital, about the NDIS.

The Day aims to raise awareness, understanding and acceptance of people with disability and celebrate their contributions and achievements.

This year’s theme is Promoting the Participation of Persons with Disabilities and their Leadership: Taking Action on the 2030 Development Agenda

Kylie is leading the way.

She’s chosen to share her life story, and her experience with the NDIS, for the benefit of others.

“There’s no doubt that the NDIS is making our lives so much better. Now, we are not being looked at as people with disability. We are being looked at for the value that we bring with us.

“We know that we have to earn it. But we want, as Aretha Franklin famously said, R.E.S.P.E.C.T. Respect.

“The NDIS is giving us choice, voice and control in our lives. We are learning how to ask for the help that we need. And for many of us that is not easy.

“Once, we had to accept what we were allocated. Now we are learning to self-advocate so we can tell politicians about our rights to have the help we need to live and contribute in the best way we can,” she said.

Kylie’s contribution to the District has been significant – in promoting and improving the way in which the District supports disability inclusion in its services and facilities.

“She has openly shared her experiences of being bullied, finding it difficult to maintain employment, navigating the challenges of stigma surrounding her disability, and independently performing every day activities,” James Everingham, the District’s Disability Inclusion and Strategy Manager, said.

She’s also played a key role in supporting the District’s approach to the NDIS.

“Kylie has been a constant consumer voice ensuring that the District’s approach is putting the needs of the person with disability first. It has been Kylie’s voice that often has had a grounding effect on us,” he said.

She has also helped the District develop processes and tools to support staff and patients navigate the NDIS by providing advice on resources.

“Kylie’s own experience as an NDIS participant helped create the District’s NDIS Planning Workbook and it’s had an ongoing positive effect on patients, carers and families supporting them in preparing for NDIS planning meetings, which are often a time of great anxiety and stress,” he said.

Kylie’s life is full.

“My NSW Council for Intellectual Disability and my Sydney Local Health District committee membership, my public speaking and arts business, my church, the Down Syndrome Association Up!Club, my new toastmasters connections, my circle of support friends and my family help me to feel like I am a bit like Wonder Woman these days,” she said.

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