Morning in Tewantin - Troy's Story
This story, as told to Catherine Raju, was written as part of the Story Project funded by Disability Services Queensland through the Community Enablers Project, 2013.
Troy lives in his own townhouse in Tewantin, a small town north of Brisbane on the Noosa River. I first met Troy with his parents, Kath and Kevin, when he was staying at the family home near Cooroy while his place was being renovated. We talked at that time about what had been involved in the planning for Troy's move to his own home. A few weeks later Troy invited me to Tewantin to see the places and the people who make up his community.
Troy greets me in the courtyard and gives me a quick tour of his newly renovated townhouse before we go downtown for morning tea. We walk past Doonella Lake, around the corner to the main street and stop at the Tewantin Deli famous for its Tim Adams coffee, brewed locally on the Sunshine Coast. Troy introduces me to Damian and orders coffee for me and then his usual hot chocolate and toasted cheese and tomato sandwich. While we wait for our orders Troy talks with the staff as he does most mornings when he comes for a drink. He had played volley ball the previous evening at the Peregian Surf Club. "It was a good game but the place was too small. Noosa club is better," he says. Morning tea arrives and Troy tells me about his week. he says that he has done his own housework as the cleaner is now only coming once a fortnight. "I don't like housework but I know that I have to do it. I vacuumed this week. The couches and the floor." He talks too about the pamphlet delivery job he does each Thursday. He has had this job for ten years now and has come to know the people in the businesses he visits. He has help from a support worker, Stan, but Troy knows the town well so they can make their deliveries in different streets. Although Troy says the job doesn't pay much he knows that he can concentrate well enough to do it successfully and the walking helps to keep him fit.
We finish our morning tea, say good bye to Damien and the staff, and walk on through the town. People greet each other, stopping every now and then to have a chat. We stop too, every five minutes or so, to say hello to people who greet Troy. The woman in the chemist shop is first and then the young woman from the news agency. Later it is a friend of Troy's mother, Kath, and then another man who says hello as we cross the main street. "I am Mr Personality in this town", says Troy.
We visit Gia at the hairdressing salon where Troy gets his hair cut regularly. "The girls look after me here," he says. "They are very friendly and they cut my hair well." Troy says that he has known Gia for a while now having met her while he was still living with his parents at Cooroy. He had to change buses then in Tewantin twice a week when he was on his way to work at Wallace Park at Noosaville. He would talk with Gia and the other girls in the salon while he was waiting. He also got to know the receptionist at the Council offices as well as the staff in the news agency where he would read the magazines while waiting for his bus.
"In many ways the move to Tewantin was the next logical step for Troy," Kath had told me. "He already knew so many people there."
We walk on to Woolworths to see Troy's friend, Danielle. One of the things Troy likes about living in Tewantin is that he can walk easily to places he needs to go. "I enjoy it here. I like where I am. It's quiet, not noisy, not like cars going down the road 24 hours a day. It's close to the shops. I like going downtown, shopping at Woolworths and bringing home my groceries."
Troy shops each Tuesday at Woolworths with Sarah, "my chef", as he calls her. Sarah has worked with Troy for a year now. Her main support role is to help him to shop and to cook healthy food. When he first moved into the townhouse his first support worker helped him with basic household responsibilities such as locking doors, washing clothes and dishes and doing simple housework. As Troy became more confident, this role included helping him with shopping and banking. Sarah is the main support worker now. She supports Troy in all these tasks as well as being the "chef".
Kath had told me that Troy's health has improved significantly since he had open heart surgery when he was fourteen years old. However, chronic respiratory problems and issues related to his cerebral palsy are still major considerations.
"When he moved out we wanted to avoid the trap of Troy becoming overweight and developing diabetes and other health problems. If Troy eats well, stays healthy and maintains good mobility then he is more likely to be able to continue to live well on his own. That is why we organised support for Troy in these areas, as well as support to assist him in his work. His health and fitness are so important."
We see Danielle at the Woolworths checkout. She asks Troy if he is coming to the football game on Sunday, a family fun day at Noosa. Troy's team, the Noosa Pirates, are playing and Troy is sure that they will win. He will ride his bike to the game as he usually does. Bike riding is an important part of his health and fitness program but he is also in training for a segment of the Noosa Triathlon in October that he won last year. He swims in the local pool and rides his bike each Monday, Tuesday and Wednesday with his support worker, Norbert, a professional personal trainer. Troy also rides regularly by himself on the bike track that winds around the lake and along the riverbank, a favourite spot for locals and visitors to have lunch or just sit and watch the pelicans take off over the anchored houseboats. Troy says proudly, "I am a sports person. A fitness person. I like riding my bike. The pool is closed now for winter but I usually swim for about forty-five minutes each Wednesday."
We leave Woolworths, turn left at the corner and walk back towards the lake to Troy's unit. We pass Daniel's house. He is one of Tewantin's police officers and has often returned Troy's wallet when he has left it somewhere in town. "It's good having a police officer as my friend," says Troy.
Back at his place Troy points out the units owned by Ben and Keith who have come to know him well in the three years that he has lived there. "I like my neighbors and I see them on the weekends. There is Susan, Marguerite, Julie and Helen. I help them out a bit if they need it." We talk for a while longer and Troy tells me how the plan to move to Tewantin began.
"It was a very long time ago. We came back from holidays, Mum, Kev and me, and Mum said that is was time for me to get my own place to live. So that was the start. It was a very good feeling. I could not wait to move down here. I was not scared. It's part of life and being adult, being more independent. I didn't want to live with anyone else. I've been with Mum for a long, long time and I needed a change when I came down here. We hit the jackpot when we found this place. My girlfriend comes over on Saturday and I have friends and family over and that is good."
Kath had said that it took the family a long time to find a home that was suitable once they decided that Tewantin was the obvious place for Troy to live.
"I did not want Troy to be living a lesser standard of life than he had always had at home. Troy likes peace and quite and space so he would not like living in a busy area. Of course, I also wanted him to be safe, that was my main concern, and not to be lonely. But now, all of the above criteria have been addressed perfectly by the unit we found. It was not obvious at first. The unit looked like a bomb shelter when we first saw it. The cupboards were ruined, the carpet was threadbare, the bathroom was in very poor condition, but we could see that it satisfied all we wanted. It was close to town but rural and spacious, looking over the lake and not in a big unit block. The units are all owner occupied. We rented the unit for nearly three years. Then, with a small inheritance from my mother, we were able to buy it for Troy and do some needed renovations. That was the next wonderful chapter in this ongoing story. The final tick in the box."
Kath talks about Troy's moving out of home as "a major turnaround for him and the family". She and Kevin had never imagined Troy leaving. He enjoyed being at home and everyone loved having him there, both in Sydney where he grew up, and when the family moved to the property outside Cooroy.
In the past few years, however, Kath and Kevin began to think about the next phase of life. Troy's sisters, Katie and Sam, had left home; Kath and Kevin were seeing a life beyond immediate parenting and the question of what life would be like for Troy if they were no longer around was becoming more important. Troy was also quite bored on the property where they lived. In his mid-30's he wanted more freedom, more of his own space. The time was right for them to begin thinking about what next.
"It was also about getting things right, getting the "what if's" out of the equation. What if something happened to us? What if there was a car accident? How would this work for the girls? There was a lot to think about. It is a desperately big decision for a parent...it was really a heart wrench. You hope and you trust ... as you are letting go".
Even though the idea of Troy having his own home made logical sense to Kath and Kevin she describes herself as being "the most reluctant one in the triangle for a long time". As a very young parent she was told that Troy's disabilities and severe health problems would mean that he would always be dependent.
"When Troy was young I was told that he would never be able to live independently, that he would never read or write so I thought that he would always live with us. I didn't have a grand vision for Troy living in his own home."
In retrospect, however, Kath recognises that Troy had quite naturally lived a life that prepared him to live independently in his community.
"Looking back, the best thing that happened for Troy was that he was born at the beginning of the era of integration. He was always part of the community, even from a young age. He never had disability funding and was not involved with disability orientated services. Despite his learning problems he went to the regular neighborhood pre-school, school and then TAFE. This kind of life was a good starting point for Troy . The major thing that made moving out of home so successful."
Kath talks openly about the importance of Troy needing funding to be able to sustain his life in Tewantin in the long term. He receives the Disability Support Pension but had never been registered with the state government Disability Services. There was a long process to follow to become part of the system and it took many years to even become aware of any possible funding. The state government local area coordinator was the first person they worked with to set the plan in motion. Kath says that her knowledge and experience helped them navigate the funding system and develop ideas about how Troy's new life might look.
Troy remembers that time too. "It was not easy. There were a lot of forms to do. It took a long time. But it was worth it in the end."
Eventually Troy was successful in being offered enough money from a new state government funding program to cover the basic support he needed. "And then all the fun began," said Troy.
"If we hadn't managed to get some funding the move might still have happened at some time I suppose, said Kath, "but the primary problem of what would happen when we are not here would have not been solved. I would have continued to support Troy but would be doing it from a distance, 'offshore' as I like to call it, driving down to his place whenever something needed to be done. Shopping, banking, cooking. All those important primary things that need to happen and that will still need to happen when I am not here. If he did not have funding I cannot see how these things could be easily managed and it would be difficult to maintain his health and fitness the way we do it now. All this would have had a big impact on the quality of Troy's life, especially in the future, and that is important to me."
When funding was finally granted the family made contact with an organisation that could broker the funding. The person they worked with was a great inspiration to the family in helping them imagine how Troy's move to Tewantin might work. Kath said that she had good ideas but was also practical and calm when it came to planning. She could talk about the detail and the possible consequences of all that would be involved, not just the theoretical notion of moving out of home. The family was attracted to this organisation as well because it offered a system of self directed support. Kath knew that this would give her and Troy more control over who they employed and how the support hours were organised.
"The processes were not simple for me at first but now I have a system in place and it works well and easily. We have been lucky with finding good staff. Mainly by word of mouth. There are good people out there to do this work but I think we have to see the relationship with staff as a two way street ... respecting each other and building trust."
Kath is happy with the organisation the family uses to broker the funds and is confident of the general arrangements that are now in place for Troy's future. When she and Kevin go away on holidays this year Troy's main support worker, Sarah, will be the first port of call for Troy if he needs help in any way. In the past, this role has been taken by his sister or aunt. They will still be available, of course, but Kath likes the idea that his sisters, Sam and Katie, will oversee the arrangements for Troy's support rather than taking on a direct management or support role themselves. Now, if anything dramatic happened to her or Kevin, Kath is confident that the girls would continue in that role, a responsibility they can share wherever they live.
Having someone take responsibility for maintaining awareness of what is happening for Troy, the overseeing role, is important for Kath. She is keenly aware of Troy's vulnerability to changes in funding or changes to how the service operates that could impact negatively on his life. She knows that nothing stays the same forever. Even apparently small changes to everyday arrangements can have important consequences for Troy. At the moment, for example, he is unhappy and angry that he is no longer able to catch a bus to his parents' place because the local council has changed the bus route and there is no longer a stop near the house. While this may seem to be a small logistical change from the council's perspective, it has had a big impact on Troy's ability to travel independently. While he says that he likes living in his own place he also misses his parents and liked being able to take the bus by himself to see them.
Despite his current problem Troy is pleased with his new life in Tewantin. He is proud of being "man of the house" and of what he has achieved in living independently. He tells the story of the time, soon after he moved in to rent the unit, when there was a huge storm. It was part of the wild weather that also resulted in the destructive Brisbane floods. The roof in his apartment started to leak. Troy says that he is scared of storms, especially lightning and thunder. He usually goes upstairs and hides in his bed but this time he rang the real estate agent who came and organised the repair. Now that he is a home owner, Troy knows that it will be his responsibility to organise such repairs. Both Kath and Troy are confident that he can handle situations like this in the future.
"Troy is far more capable than I ever knew", says Kath, "and far more capable than I ever let him be."
For Kath and Kevin the move "has been such a win ... a bonus for Troy and a bonus for us." None of it could have been imagined even five years ago. There has been some luck, some inspiration from others and a lot of good planning to make it work. As well as all this, Kath believes it is the timing that has been a major part of the success of the venture both now and for the future.
"I realised that we had the grace of time to massage things into place without doing it all after an accident or sickness. It was not an immediate transition. It was more comfortable and gradual. There were a lot of little things to think about, not just the big question of a house to live in. It was thinking about unexpected things like storms and blackouts or how to manage unsolicited phone calls from telecommunication companies. This was always about establishing a good life for Troy, not just about him moving out of home. We had the time to get things right. I realised that, if I stopped thinking about myself, this was better for Troy than a sudden change. Life is guaranteed to make that moment happen when we will no longer be here for Troy but now we can make this a graceful transition".
Troy finishes his story with a vivid description of how the renovations have made his townhouse so much better to live in. He says that he is very happy in his new home and happy to be living in Tewantin. "I'm very glad I moved here." We walk outside then to the grassy area leading down to the lake. It is shaded by tall gum trees and looks like an ideal place for a party. "There will be a party here soon," Troy says. "A few parties". There is a lot to celebrate.