One of the biggest challenges faced by parents of young people with disabilities is dealing with the uncertainty surrounding their child’s future. Most parents dread the day they can no longer care for their children.
Of the myriad of issues arising from that reality is finding a living environment which allows their adult child to reach their full potential and be cared for in a nurturing space.
The idea of their child being shunted into some form of nursing facility is something the parents find difficult to comprehend.
They want their children to be an integral part of society, to grow, to learn and to develop in their own way with the support they need to keep them safe.
Yet, in Australia the reality does not always match the hopes of parents, although governments at both state and federal level are seeking to find answers.
In a small corner of Tasmania, a local Uniting Church has developed a model which could become a real answer to the prayers of many parents.
At least it is already bearing fruit for 12 young people and their families.
The Kingston Uniting Church is located about 15 km south of Hobart. For many years, the church has supported young people living with disabilities through a range of programs. This has included the development of a social group with links with the broader Tasmanian Crossroads group, a church fellowship for people with disabilities and their families.
That relationship has seen the church consider how it could better reach out to young people with disabilities and their families by creating an intentional and inclusive community on its three acres of land known as Rowallan Park.
The residents – who all grew up in the local community and had some social connections with each other prior to moving in late last year – reside in four one-bedroom, two two-bedroom and one four-bedroom residences built on site with a $2.8 million grant from the Federal Government’s Supported Accommodation Innovation Fund (SAIF).
A worship space and community centre for the broader community has also been constructed. The Church’s endeavours are supported by Possability, which provides support services to residents, and UnitingCare Tasmania.
A manse for the church’s minister has also been constructed on site to further build on the connection between the church and the residents. There are future plans to incorporate affordable housing for people with disabilities, retirees and those on low incomes.
Both the state and federal government have been active supporters of the project.
Recurrent funding from the State Department of Health and Human Services enables Possability to undertake its work and National Disability Insurance Scheme support is provided to some individual residents.
It is expected the initial stage will be officially opened later this year, which will mark an important milestone in the decade-long vision of the congregation.
The church’s vision is not just to provide a roof over the heads of the residents but, more importantly, to work with them and their families by offering tangible support and a day-to-day connection.
Church members will often stop for a chat or offer a word of encouragement to residents when they are on-site. They are seeking to build real relationships built on mutual trust and respect.
Anyone can get a house built but developing a community takes much more time and effort. It is a challenge the congregation has readily embraced.
Church member Janine Romaszko, and her husband Richard, have been among the key driving forces behind the development at least partly because their 28-year-old daughter, Elise, has Down syndrome.
Janine stressed that, for the residents, it is not as much about living independently but learning and striving to live interdependently, surrounded by a supporting community consisting of the congregation as well as their fellow residents, parents and families.
It is a model aimed at encouraging the residents to see themselves as equal partners in building their own society on site.
“Often people with disabilities are seen as objects of charity without it being considered that they can actually give back to society,” Janine said.
“We are seeing it happen particularly in the ‘big house’ (the four-bedroomed property) where they are each bringing along food they have made to share. There was another time when one of the young men was not so keen on attending a baby shower for one of their support workers but went along and helped wash up.
“He was not asked; it was not expected of him but it was just something he did.
“It is the concept of communitas – people become a community by doing things with the common goal and common purposes of assisting their own society.”
Kingston minister Rev Colin Gurteen stressed that the vision for the site was not the ‘property’ of just a few members but one the whole congregation embraced whole heartedly.
“This has been the vision of the people of God in this place. We have not taken any steps without the entire congregation being on board. It has been the congregation having a sense of God’s provision for us and the call upon us to share that with others,” he explained.
“The starting point was that we already had a relationship with this group of people and we saw the announcement of the SAIF funding as an opportunity for us to respond and begin to act on the vision.”
Mr Gurteen said the congregation had received great support throughout the development from the Presbytery of Tasmania’s Resource and Development committee, the Property Board of the Synod and a Property Control Group which drew on the specific skills of the broader community as well as the congregation.
“We could not have done this without the support we have received from outside the church. Everything we have achieved has been consistent with our vision of working with the broader community,” Mr Gurteen said.
“There is always the risk of the church ‘knowing’ what everyone needs and, at times, doing it for them without developing a relationship with people to ensure that what we believe is really what is required.
“For this project, we have developed those relationships at every step. This has included engaging with the residents and their families, development professionals and agencies (which provide the residential support and management) such as Possability and UnitingCare Tasmania so it has been about a partnership and not just the church.”
Speak to the parents about what has transpired in the 12 months since the first resident moved and they talk of their children expressing a growing sense of personal optimism in the future, which did not seem as clear before the development.
“It is beautiful,” John Coyle said.
“There is a real warmth you feel here. As a family we have been embraced fully and that is after living on the periphery of society for probably 15 years.
“I feel so welcome and so does my daughter, Bridget. She has a real sense of being at home.”
While not from a church background, Mr Coyle said he had no difficulty with the development being church-driven.
“I have not had any issues about feeling accepted and am actually embracing that and respect everything it represents.
“The warmth and love for me and my family is something we have not really felt for more than a decade.
“I have felt extremely vulnerable. I have had to engage the support Bridget requires and there has always been the concern about what happens to her if anything happens to me.
“But you cannot get better than this scenario. So much thought has gone into it. It is a wonderful example of what can be achieved.”
Mr Coyle, a widower, said having Bridget at Rowallan Park had changed the dynamics for his whole family by allowing him the time needed to also nurture and support his other two children, one of whom has autism.
That sense of creating a welcoming environment weighed on the church, particularly in the early weeks as residents began to adjust to their new home.
Church council members Anne Warren and Liz Carter brought small welcome gifts for residents and their families as part of the unofficial opening last year.
Mrs Warren said the initial welcome event, when the congregation hosted a lunch for residents and their families, had created a real spirit of ‘oneness’ which is a key aspiration of the vision.
Brian Morton said finding a home for his daughter Pailin had relieved much of the anxiety about the future for himself and wife Caroline.
“When you think about the future (for Pailin) you think of things such as nursing homes and it makes you shudder,” he said.
“This is just such a relief.”
Mr Morton said the couple now had the opportunity to do things together without being tied to Pailin’s schedule, although there was still a sense of loss, at times, that their daughter was not always around.
“We could never do anything spontaneously. It was either planned or it was not done.
“Now we have even been able to just get away for a few days with little notice.”
Mr Morton said he and Caroline viewed the Church and the other residents and their families now as part of an extended familial unit.
Mr Gurteen said while the congregation acknowledged the development could serve as a model for other congregations, it could not be seen as a one-size-fits-all approach.
“While it is an example of what can be done it will always be unique to us and grounded in who we are.
“We see this as an opportunity given to us by God, and in other places it will be about them seeing their opportunity.”
Rowallan Park serves as a wonderful example of a church community recognising its vision and working with others around it to create a new and dynamic answer to a question which has rested heavily on the minds of many.
By working in a collaborative partnership and staying true to the core vision Kingston Uniting Church has achieved something special for all involved.
Elise loves a home to call her own
Elise Romaszko is no different to any other 20-something who has recently flown the nest and moved into their own home, away from the watchful eyes of their parents.
She admits there are days when the challenge of adjusting to taking care of herself – and the myriad of tasks which come with that independence – can seem a little overwhelming and other days when everything goes smoothly.
“It is a bit up and down but I love having my own space. I like the quietness but sometimes I stay up too late watching movies,” she laughed.
Above all else, the 28-year-old enjoys the sense of freedom living alone gives her, even though there is plenty of support around from not only her parents, Richard and Janine, but the wider community at Rowallan Park.
Since moving in, Elise, who has Down syndrome, has not let the grass grow under her feet. She has already begun a vegetable patch and is known to be a dab hand in the kitchen, particularly when it comes to making cakes.
“I make birthday cakes for the other residents.”
Elise has a strong sense of independence and is keen for Richard and Janine to respect her desire to forge her own path in life.
“I have my own rules and they (her parents) have to book in time with me,” she said, only half joking.
“If I am not here when they visit there is a blackboard at the front door and they can leave me a message.”
While it has not been easy to let go, Janine said she and Richard continually worked at giving Elise the freedom to make her own decisions.
“We have let her try things and sometimes make mistakes. There is no one peering over her shoulder saying she cannot do this or that.”
Janine said she was delighted to see Elise continually ticking off many of her own ambitions.
“Elise was once asked by a teacher what she wanted to do when she got older and she said to travel overseas by herself, work in an office and have her own place to live.
“Well she has ticked the last two of those off her bucket list (as she works in a secretarial support role for two days every week).”
One also gets the feeling that an overseas trip may not be too far away.