The ACT Down Syndrome Association- helping families in Canberra for almost 30 years - is in danger of folding after the loss of a corporate sponsor, devastating its members.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
On Friday- World Down Syndrome Day - it has been revealed to The Canberra Times that the association's office in Pearce, its office worker and the association itself are all facing an uncertain future beyond June.
The association has helped hundreds of Canberra families since its inception in 1987. It has enabled the parents of children with Down syndrome or Trisomy 21 to break down barriers, including getting their children into mainstream schools, and supported them with resources, networks and an empathetic ear.
The association's president, Alicia Flack-Kone, said it was grateful to its previous sponsor, which had provided up to $15,000 a year for several years, and had no desire to name and shame them. The sponsorship had not been renewed after a change of management last year and the association had been surviving on savings and donations since then.
But it was now reaching a crisis point, unless a new sponsor or major donor was found soon.
''If we can't secure a new sponsor, we will have to close shop and do it all from our kitchen tables,'' Mrs Flack-Kone said. ''And that does make our job more difficult.''
The association's volunteer education and parent support co-ordinator, Kelli Gowland, said it was still a predominantly parent-run organisation, with the part-time office worker the only paid employee. But the office - even now reduced to opening just nine hours a week - helped to ease the pressure of the administrative load.
''The committee is over-stretched as it is, so to put on top of that, administration issues, the association would certainly be reduced in its ability to do what it does, so some things would have to go,'' she said.
She said there were about 260 people with Down syndrome in Canberra, with on average four babies a year born in the ACT with the chromosomal abnormality, based on the latest statistics.
Ms Gowland said the association helped new parents and parents with children facing different milestones such as starting school, reaching puberty and looking for work. It helped them to know more about the health issues of their children, especially as they got older. It ran a ''confident speakers'' group for teenagers and young adults. The association also ran workshops for parents, teachers and other professionals to understand some of the day-to-day challenges facing the children, with often only very simple strategies needed to be known to help them. And the association also provided other services including family fun days and other social outings.
Ms Gowland, and her husband, Cameron Johns, of Forde, have three daughters - Ellen, 5; Molly, 3; and Alexandra, seven months. Molly was born with Down syndrome, despite tests showing the risk was one in 1800 and Ms Gowland being only 34 at the time. Molly will go to a mainstream preschool next year. And she is a much-loved part of the family.
"She's fabulous. She's so much fun,'' Ms Gowland said. "We're just focused on getting on and enjoying our lives.''
■ Donations to the association can be made at actdsa.org.au
