About me

Kylie is an experienced professional speaker who draws on her amazing life of challenges and joys both before and after the inception of the National Disability Insurance Scheme (the NDIS). She advocates for change for people with Down syndrome and intellectual disability through addressing the challenges highlighted by the findings of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Disability Royal Commission) and the aspirational United Nations Convention on the Rights of Persons with Disability (the CRPD).
Kylie Scott
Professional Speaker | Advocate | Artist

My Biography

My Biography


My full name is Kylie Nicole Scott. I was born in Melbourne in November 1979. My Down syndrome (and intellectual disability) was diagnosed at birth.


I first attended early intervention in Melbourne, and when my family and I moved to Canberra for Dad’s new job in 1981, my parents began their lobbying as the early intervention there wasn’t as good.


My parents wanted me to attend the same primary school as my older sister as they wanted me to learn to be part of my community, so that’s when the real lobbying started. But with the help of a friend who they paid to attend my classes for 3 years, and Mum spending time with teachers after school assuring them my behavioural hiccoughs were to be treated the same as every other child, I was able to be included all through my school years.


I had part-time voluntary and paid jobs after TAFE (business studies), and started in a part-time position in the Australian Public Service in 2001.  But the public service wasn’t ready for someone like me – and job agencies didn’t have the support time that was needed.  Mum and I moved to Sydney in 2009, but again – after waiting 2 years for a transfer – the policies existed but the realities did not support workplace inclusion.


After having to resign in 2013 on medical/mental health grounds I was very depressed. I worked for a year at an ADE, but I was not happy. I felt like a square peg in a round hole.


Mum helped me register my business – kyliedownsbarriers – and I started public speaking. And I had 2 wonderful years in 2017 and 2018 at uni2beyond at Sydney University.


I am involved with many committees, and now – with NDIS support – I am living independently at Erskineville with Alfie, my puppy. I love my community activities – and, thanks to Mum and my ‘K Team’ of support people, life is good.


May 2024



Professional summary:

*   Lived Experience Educator, SLHD – August 2023-ongoing

*   Self-advocate/speaker, United Nations, New York (21 March 2023)

*   Witness – Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability – February 2020

*   2014-ongoing – Public Speaker and Artist, kyliedownsbarriers, ABN67716565206

*   2016 – Packaging Assistant (10 hours per week), Ozanam Industries (Australian Disability Enterprise), Stanmore, NSW

*   October 2011-October 2014 – Office Assistant (part-time), Australian Public Service Department, Sydney 

*   March 2010-December 2011 – Office Assistant (part-time), FRANS, Croydon NSW

*   February 2001-July 2009 – Office Assistant (part-time) Public Service Department, Canberra, ACT (Leave without pay (2 years) awaiting a public service transfer to Sydney)

*   1999-2000 – Office Assistant (part-time), ACT Down Syndrome Association, Canberra, ACT

Employment Skills

*   Advocacy        *  Powerpoint presentations      *  good task focus      * filing

*   Keen to learn    *   data entry    * punctual, neat and tidy    * OH&S awareness


*   Public speaking    *   Art    * Advocacy    * Travel


*   Lived Experience Educator, SLHD (2023-)

*   Member, Agency for Clinical Innovation (ACI) Intellectual Disability Health Network (2022-)

*   Down Syndrome NSW representative on Down Syndrome Australia Advisory Network (DSAN) (2018-)

*   NSW Council for Intellectual Disability Board (2022-) and Advocacy Committee (2018-)

*   Valued Contribution Project (Research), UNSW (2022-)

*   SLHD NDIS Governance Committee (2016-2018)

*   Member, SLHD NDIS Action Plan Committee (2019-2020)

*   Member, SLHD Disability Implementation Committee (2021-)

           NB: Sydney Local Health District Volunteer of the Year November 2019

*   Member, Inclusive Research Group, Centre for Disability Studies, Sydney Uni. (2016)

*   Member, Joint Advisory Committee, NSW Ombudsman (2016-2017)

*   Member, Auburn City Council Access Committee (2012-2016)

*   Volunteer with ACT Down Syndrome Association, Special Olympics, Salvation Army (Auburn), Anglicare (Ashfield), Down Syndrome Association of NSW (NSW DSAN representative 2017-)

*   Selected to play tennis for Special Olympics Australia in 2003 (Dublin – silver medal) and 2007 (Shanghai), and, for the ACT, golf in 2009 (Adelaide)


*    Canberra (ACT) College and High School, Weston and Woden – Year 12 Certificate

*    Certificates I, II and III in Business Administration (ACT and NSW)

*    uni2beyond, Centre for Disability Studies, Sydney University (2017-2018) studying Art History, Creativity, Art and Film, Media, Contemporary Art, Renaissance Italy.

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