“The fact that we were providing good quality services to people with disability was my main aim, and we achieved it.”
Jan May and her husband Bob played an integral role in The Disability Trust going from a small operation to a much bigger organisation that became able to offset the many disadvantages that people with disability encountered.
They moved to Wollongong from Newcastle in the 1970s and Jan got involved with the Trust because their son Mark needed support and she could see that it was an organisation with a very valuable purpose.
“We worked hard to get other services like accommodation services for people, out-of-school services, and quite often I had to play a very big part and then do it,” she recalled.
“I mean, the number of times I brought people home to sleep because they didn’t have any room until one day I said ‘I’m not doing that again’, and we developed services.
“It was very bad. There was nothing. There was no accommodation services at all for people with disability.”
Jan said during her time on the board they always tried to have a mix of parents of children with disability as well as professionals like lawyers and financial specialists to ensure the organisation made the right decisions but was also set up to have a sound future.
“We got a grant and bought a little house up near the hospital, a tiny little place, but that’s when it started to grow. And then we got too big for that, and they built a building at Fair Meadow, and that was called the May Building, so that was a big thrill for me.
“And then we outgrew that and moved again. And it developed from there into a great organisation of which I’m very proud.”
Jan said the Trust had to raise a lot of funds in its early years by putting on events like art shows as well as relying on the payroll deduction scheme set up with employees at the steelworks.
In 2000 she was awarded an Order of Australia Medal for her outstanding service to the disability services sector.
“It’s opened the world up for Mark. It was hard but I was determined to fight and get services not only Mark, for all people with disabilities,” Jan added.
“All the people that have been with the Trust for ages, they didn’t work just for their child.
“I’m so happy with everything the Trust has done.
“As long as you’ve got a good chair and a good CEO, it will remain strong.”
And after all these years Mark still lives in accommodation provided by The Disability Trust
“He’s at the best place,” Jan beamed with pride. “By the time he was ready to move out of home, we had a choice of where he could get accommodation, and I chose the Trust.
“He’s learned to be much more independent. He still rings, phones me every morning and night, and asks me four times how I am. He’s a lovely man, a very happy person.
“It was hard getting him to move out of home, so we used corruption and all sorts of things. Told him he was going to have two homes, their home and ours.
“He settled in quite quickly, still tears, and he still came home the whole weekend. But that didn’t last long, and then suddenly one day he said ‘I’m not coming home Friday nights anymore’.
“And I said ‘Why is that?’. He said ‘well, they all go out and I can’t go, I’m at home’. He was in his 30s by then and ready to socialise with his friends rather than be home with his parents.”