Jeremy and Margaret Ward are parents of three grown children, the eldest of whom, Mena, lived with a disability.
Since their daughter's death in 2009, the pair have made it their mission to share their revolutionary way of thinking to improve the lives of people living with a disability and their families.
The vision involves ways in which families can build partnerships with disability services that remain effective and respectful and discovering who to reach out to as a safeguard in the event of the carers death.
Ms Ward will join her husband in speaking about their ideas at a workshop organised by Family Advocacy.
“We were parents of a person with a disability,” Ms Ward said.
“She died at the age of 30 but we were able, during her life, to show how this could be done.
“It wasn’t that we suddenly thought of all these ideas, we were helped enormously by allies and by good professionals.
“It was against the tide in those days [when Mena was alive] because we had to break a number of rules to be able to work that way.
“Now that the National Disability Insurance Service is in place, we come with quite experience of how you do that and family advocacy has invited us to share our experience.”
Ms Ward said the main concept that they were trying to get across was that disability support works best when their is a good relationship between families and support services.
“We actually need every mind and every capacity to work well together to build a good life for a person with a disability,” Ms Ward said.
“Many people are damaged by services and we don’t trust them.
“We get quite defensive and often we play the victim role with all the legitimacy as well because many of us have been victims to poor service.
“It’s getting through all that with the new NDIS,” Ms Ward said.
Jeremy Ward said the workshop would also discuss what the “good life” looks like and how the right planning could support people.
“The main message we’re wanting to get across is the importance of having a clear vision of what people want to achieve and what we call the “good life” for everyone,” Mr Ward said.
Mr Ward said another big fear for parents is what would happen to the child once they’ve passed away.
“We need to think about bringing other people in,” Mr Ward said.
“So that when your not able to give the support that you currently give, there will be other people there to provide support.”
The information workshop will be held at the Armidale City Bowling Club on Wednesday October 19 before heading to Taree on Thursday.
