Help send Kylie to the UN World Down Syndrome Day

I write on behalf of my daughter, Kylie Scott, who has Down Syndrome, an intellectual disability. Kylie is now aged 43, and is a public speaker, advocate and artist. Kylie has been invited to speak about her lived experiences at the United Nations on World Down Syndrome day in NEW YORK on 21st March 2023!! I am asking for some financial assistance for this once in a lifetime opportunity.

A couple of weeks ago Down Syndrome International (DSi) emailed Down Syndrome organisations and communities re the upcoming 12th World Down Syndrome Day events (with the theme ‘With Us Not For Us’) at the United Nations, New York, on 21 March 2023, requesting people to apply to put together a video for display, or to attend to speak.

Kylie and I discussed submitting a short video, and I assisted Kylie to apply to do so. To Kylie’s great excitement, a week later the reply from DSi said yes, Kylie could submit a video - but at the same time suggested that Kylie would be welcome to attend and present in person!

So now we are in the process of ensuring Kylie WILL be able to attend. She has important messages to convey, speaking from her own experience, regarding the UN Convention on the Rights of Persons with Disability (the UN CRPD), as it has been and still is being implemented following Australia signing up to it back in 2008.

Naturally, to fund the air fares to New York and return of Kylie and a support person, plus up to a week’s hotel accomodation, is not an easy task.

Kylie commenced her business in 2013 following disappointing and depressing workplace experiences which caused her to suffer significant mental health issues. With NIDA courses and speech therapy, and 2 years at a Sydney University program called uni2beyond for people with intellectual disability, she set off on a new path. I note here that Kylie’s business has never returned her a taxable income. Most of her speaking and committee involvement is voluntary. Kylie receives a part Disability Support Pension, and has a small superannuation income.

Kylie now lives independently at Erskineville, NSW, with her bichon frise puppy Alfie. During COVID the public speaking opportunities were limited, but Kylie expanded (via Zoom) her existing committee interests, which now include -

* the Sydney Local Health District (SLHD) NDIS Implementation Committee;

* the Agency for Clinical Innovation (ACI) Intellectual Disability Health Network;

* the Down Syndrome Australia (Down Syndrome NSW) Representative on the Down Syndrome Australia Network (DSAN); and

* the NSW Council for Intellectual Disability (CID) Board and Advocacy Committee.

It is my assessment that the week-long trip for return air flights and accommodation for up to a week in New York could amount to between A$15,000 and A$20,000 in light of Kylie’s medical/health needs and the need for her to have a support person (which will not be me, her aging mother).

Thank you for taking the time to read Kylies Story.