Advocate for a normal life

08 Jan 2013

By Robert Hiini

In the early 1980s, Leonie Reid and husband Pat noticed there was something different about their youngest daughter Stephanie.

Socially awkward, frustrated and prone to unintentionally disrupting the play of her peers, a proper diagnosis would be many years in coming.

All three would later learn that Stephanie had Aspergers Syndrome – a form of autism characterised by an inability to understand and navigate social cues; repetitive and obsessive behaviours; and an often breathtaking ability to specialise in certain areas of learning.

Aspergers wasn’t standardised as a diagnosis until the early 1990s.

“My daughter was about ten when we were almost congratulated for being so realistic, because we would know that our daughter would never ever be able to work in the open workforce,” Leonie said.

“That didn’t go down with me at all.”

In the in-between years, there was no one to turn to; seemingly, no one could help; no one could even tell them what it was they were observing in their daughter. There was nothing.

It was that confounding sense of helplessness, more for Stephanie than for herself, that first prompted Leonie to enter the disabilities field; one she has only just left after resigning late last year after 21 years working for Personal Advocacy Service (PAS) in Morley.

“We just couldn’t work her out at all when she was young – nor could anyone else,” Leonie said.

“She was autistic but she didn’t display all the characteristics of severe autism so she was quite social. She loved to be around people but couldn’t connect with them and she couldn’t play with other children because she didn’t know how to.

“She was very good at destroying everyone else’s games because she couldn’t follow them but the reality is, she was yearning for something she could understand.”

One place where Stephanie did seem comfortable was at church, during the Eucharistic Prayer.

“I began searching for some way to help her on the faith side of her life because there was obviously some connection for her there,” Leonie said.

“She was totally fixated on the words in the Eucharistic Prayer. We realised later it’s because the words are limited and they stay the same all the time. She didn’t have to cope with any change that was coming.”

Already a teacher, Leonie retrained to work in special education but found there were no appropriate positions available in Perth.

Her desire to give Stephanie a more appropriate form of instruction for Confirmation than she had had for Holy Communion led to Leonie’s first encounter with Sr Eileen Casey in the late 1980s.

Sr Eileen was preparing to establish the Personal Advocacy Service in Perth after being immersed in ground-breaking programs for people with intellectual disabilities in Chicago.

Prior to its formal establishment in 1989, Leonie encouraged Sr Eileen to begin a program of formation for sacramental candidates with intellectual disabilities (including her daughter, Stephanie).

As a parent she was captivated by the experience and later had the opportunity to join the PAS staff in 1991.

For the better part of two decades, Leonie Reid’s name has been synonymous with what PAS and its small army of volunteers does (there are now 18 personal advocacy groups based in parishes throughout Perth).

The groups pair a volunteer or ‘advocate’ to a person with an intellectual disability or ‘friend’.

‘Friend’ is much more than a moniker, Leonie told The Record. Meeting by weekly meeting, it becomes the reality.

“It’s really about developing that relationship. The friend learns what it is like have a meaningful relationship with somebody. They learn what it is like to have someone [other than their parents] who cares about them and who loves them; someone who will be there no matter what,” Leonie said.

There are typically six advocates and six friends in each group, as well as two volunteer facilitators.

“Over time the advocate will begin to invite the friend to things happening in his or her life, so that might be going to barbeques and birthdays … It begins to make life quite normal.

“That’s what parents are so thrilled about really; that their child, like their other children, has those connections and is able to experience those as well.”

The role of the PAS office in Morley is principally to provide training and support to facilitators and volunteers.

What underwrites everything is a strident belief in the worth and potential of everybody, a belief which, in Leonie’s case, was born of her own experience, when her daughter was first diagnosed.

“Back then, people just didn’t see the potential and I refused to believe that. Nobody can say that when a child is ten. Everybody has potential to grow and develop no matter how severe their disability. That has been demonstrated over and over again in our program.

“When we have people spend time with the friends with disability and gently encourage them they learn, not academically, but they learn about life and relationships and, to me, that is much more important than anything you actually know in a book sense.”

The volunteers have been a constant source of inspiration, she said. Most have had no ongoing personal relationship with a person with a disability when they first contact PAS to volunteer themselves.

“We have most success recruiting volunteers in those parishes where they have a large ethnic base to them because they are more focused in that way of giving back to the community.

“All the volunteers that have come through have been absolutely fantastic and that’s what’s kept me there, seeing and getting to know all those people,” she said.

Most do not volunteer for any substantively faith-based reason, she said; most people want to help others.

If she has any significant regret it is not being able to leave PAS with a rock solid funding base.

The program is small and people with intellectual disabilities don’t have a large, visible presence in the community.

Attracting donations and sponsorship has always been difficult. Around 50 per cent of PAS’s funding is made up from State and Federal Government funding, with around 25 per cent coming from the Archdiocese of Perth.

PAS, under her directorship, has always eschewed a corporate, service provider image.

“We’re not giving people that message. We want people to see this as a normal community gathering. We don’t see ourselves as providing a ‘service’ in that way.

“People don’t pay for what they get in our program. The time is freely given and it’s unconditional, and that’s the thing the parents love about the program. It’s not that it is not costing them anything; it’s because there are people in the community who are doing this just because they want to, not because they are being paid.”

Leonie empathises with parents who worry about what will happen to their loved one with an intellectual disability upon their own deaths.

“Like all other parents, I’m very aware that I’m relied on heavily for support and when I’m not here, what’s going to happen?” she said.

Physical security and care, and protection from fraudsters are particular concerns, she said.

The appointment of a public advocate might be an option for some families but is unlikely to be available to others.

The criteria for determining whether a public advocate is necessary is based on a person’s ability to make their own decisions.

People with Aspergers are likely to score poorly in some areas but very high in others.

Before leaving PAS Leonie laid the foundations for a group in her area “to build that little community of people; to give added protection”.

Stepping away from PAS has been difficult, she said candidly when speaking with The Record in early December.

“I’m struggling. I really am. I know the time is right but it’s been 21 years. It’s really hard, but I know the time is right for me to go.

“I’m pleased we’ve been able to put the staff in place who can take the organisation forward. It needs someone new and I’m just running out of energy. It needs that new burst of something to tackle and look at different ways of doing things,” she said, expressing complete confidence in her successor as PAS Director, Annabel May. Wanting to spend more time with husband Pat and her adult children was another major factor.

At some stage she would like to make a railway trip over the mountains of Alaska; Pat is interested in fly fishing in New Zealand; and both are keen on visiting China for a different travelling experience from what they have had to date.

Although formally retired, it is likely Leonie will still be helping others in some capacity, when and where the need arises.

She said her understanding of being a Christian extends beyond merely attending church.

“It’s much more than that. It’s living it out; living out that faith. When I see that in people, it’s what keeps me going.

“I really think I’ve been put in the position I’m in for a purpose. I had a daughter with a disability but I also had a lot of support to get beyond just coping.

“There are lots of things happening in the Church that I don’t necessarily agree with and like most people I’m very concerned about how the Church is viewed by others at the moment but to me, that’s not my life.

“I can only do what I can do at my own level. I hope God will be pleased with that.”