This Article was originally published in a CRUcial Times magazine issue 11 March 1998 and describes Colleen Dolan and her husband’s search for a suitable Lifestyle for their daughter Lynette.
All parents of a son or daughter with a disability inevitably wonder: what will happen when we are no longer here? When our children are young we involve ourselves in their education, include them in the lives of our other children, make certain we celebrate birthdays and generally go on with our lives, putting that thought in the background. But it is always lurking there and when our child becomes an adult the thought becomes persistent. About ten years ago my husband and I decided we must tackle this problem. As a starter I went on an organised tour of adult accommodation facilities conducted by a major disability service provider.
The first house we visited was described as a ten-bed residential. It was well presented, clean and tidy. One area contained a kitchen, lounge, dining-room and supervisor’s flat which was separated from the ten bedrooms by a well kept courtyard. All very nice indeed, so why did I feel uneasy? Was it perhaps the number of bedrooms?
Our group consisted of several parents of people already using the facilities we visited, and one mother proudly opened the door to her daughter’s room where there was a collection of dolls on display. It was a beautiful room and everyone responded with an “ooh” and “ah”, but the thought flashed through my mind: all of this girl’s possessions are in one room.
This thought lingered in my mind as we travelled by bus to the second facility. I thought of the possessions of our own daughter, Lynette. They were spread throughout our house: her tapes and records in the cupboard next to the sound-system in the lounge; her bean-bag in front of the TV; her framed photos in the display cabinet in the lounge room; her tennis racquet, skate-board and bike helmet in the sports cupboard downstairs. And what about her exercise bike? What would need to be left behind if she were to have all her possessions in one room?
At the second facility we were served morning tea in an attractive lounge and it seemed that no expense had been spared on the new lounge suite. But the shortest member of our group had difficulty in getting up out of her lounge chair and we wondered: how do residents manage, and were they considered when this furniture was chosen?
Arranged on the walls were various artefacts. I remarked on these and the residential supervisor said “They are ours, from our holiday in New Guinea”. We learned that residents were only allowed in the kitchen to help with cleaning up after meals because the supervisor liked a clean kitchen, and as we left the residence the supervisor showed us what she referred to as “our office”. I left with the feeling that it was also their home.
At the third facility we visited, the transfer of a resident was being made to another facility where she would have a smaller room. The young woman had her own furniture but the new facility had been furnished by the organisation and consequently arrangements were being made for the disposal of her furniture. She had not yet been told of this as she was expected to take it badly. I thought of my own daughter’s Queen Anne bedroom suite and writing-table, which had been her sixteenth birthday present.
I thought of how she loved it, and how she cleaned it every Saturday morning. These thoughts caused me to leave the group and go for a walk in the back garden.
In the bus on the way home, several parents expressed their appreciation to the representative of the organisation for providing these wonderful facilities. I was silent, however, and when I arrived home I said to my husband: “Lynette will never go to a residential. She would be like a bird with its wing clipped. She would not be happy”. And then I cried.
Over the next months I did a lot of soul searching. I slowly realised that the people living in the residentials were not living an ordinary life. Their lives were regulated. Their meal times were controlled by staff rosters and their meals were prepared for them. They had certain times for retiring to bed and for rising in the morning. They always moved as a group and they travelled together in the organisation’s bus to a sheltered workshop or an activity therapy centre. They worked together and came home together. In other words, they lived, worked, and played together. They could not even decide with whom they lived because that was determined by a waiting-list. To make matters worse, some of the facilities had a “respite room” which would be occupied by someone for periods ranging from one to three weeks, so they were continually living with a virtual stranger in what was their home.
Neither was the room which residents occupied really their own. They could be shifted from one facility to another, depending on the needs of the organisation. They had a room in a house – not a home – and could exercise no control over their own lives. As a matter of fact, decisions about their lives could be made by people over a thousand kilometres away, who did not even know them.
I decided I could change these things and got myself elected to the board of the organisation. These were good people and they would listen, I reasoned. What I did not realise was that they would not understand. I became known as a trouble-maker and radical, and eventually realised that my efforts were a hindrance, so I decided to leave the organisation and direct my efforts into trying to create a service which would enable my daughter to lead an ordinary life.
Of course I was not alone in this as other parents had travelled the same road. We banded together and after several attempts, were successful in obtaining funding to pursue our dream. Our organisation was named Real Living Options. Only people who can look beyond the disability and see the real person can share our dream. This does not mean that we pretend the disability does not exist. On the contrary, we say that everyone has the right to lead an ordinary life and some people need more help than others.
Our dream, in part has been realised. We do have our support service up and running. We support eleven people in ten households across Cairns and in adjoining towns. The people we support choose where they want to live and whether they want to share with a friend or live alone. Some of the people we assist still live with their parents, some people live in units attached to their parents’ homes, and some live in units which they own, while others live in rented accommodation. Most importantly, they all live in what is their own home.
The people we support have lifestyle assistants who help them in their household chores. They have their own bank accounts, and do their own shopping. They choose and cook their own meals and decide on their meal times as well as deciding when they will retire to bed and rise in the morning. They do the ordinary things that all of us do every day, the only difference is that assistance is provided to do this. Some people need very little assistance from our support service, and others need a great deal.
The people we support choose their own lifestyle assistants, with help from their families and from a short-list compiled by our Coordinator. We try to match age, gender and personality where possible so that they can move freely in the community, not in a group with a supervisor, but as two people of similar age out-and-about in normal activities.
Some of the people who are supported by our service have ordinary jobs and some do voluntary work. Some people are seeking employment and some choose not to work. We may be involved in this aspect of their lives-it all depends on what is requested of us. We simply respond to requests for assistance.
For each one of us, an ordinary life is made up of many small decisions we make as individuals and not bound by restrictions of group living, in fact, we would not tolerate such restrictions. Often people who live in group facilities express their frustration with such restrictions and are then placed on behaviour management programs. Very few large service providers ask themselves: are we getting it wrong; should we be doing things differently? To the contrary, their attitude usually is: “we are the experts”.
Unfortunately our present government appears to support a traditional congregated and segregated approach. Expressions of interest are presently being called in the Cairns area for centre based respite care. No doubt it will be supported because desperate people accept anything. I can’t help thinking of all the money it will cost and how much difference might be made to people’s lives if that money was used for individual support.
Recently I was studying a graph produced by Queensland Parents of People with a Disability (QPPD) which shows that less than 5% of people with disabilities want centre-based accommodation support, and over 90% of people with a disability want community-based lifestyle assistance. I wonder when governments will ever learn how to offer good support. At the very least, we should be able to ensure that individual lifestyle assistance receives a fair share of available funds. Ten years down the track, I look back on the enormous amount of work it has taken to establish our support service and wonder if it has been worthwhile, but I can walk down to my daughter’s unit and be greeted with “Hi Mum”. I read her diary while she gets drinks for us. I can then talk to her about events that have happened since I last called on her. From the diary notes I can remark on how clean the curtains look, or ask to see the new plant in her garden, or if I can hear her new tape. This is very similar to what happens when I visit my other daughter. The difference is that Lynette needs to have her activities recorded in a diary so that these natural conversations can take place between us. Our dream has come true.
What will happen when we are no longer here? I don’t know the answer to that but neither do I know what will happen to our other children. All we can do is build a service which is based on our philosophy of an ordinary life. Lynette is living that now and her skills in all areas are gradually increasing. We can build networks around her and have procedures in place, and trust that these safeguards will meet Lynette’s changing needs during her lifetime.
People often ask of our service: “What sort of service does Real Living Options provide?” They are surprised that we have no glossy brochures advertising ourselves. The answer is that we do not tell people what we can provide to them. When we are speaking to someone who is seeking our assistance we ask, “What type of assistance do you need from us to enable you to lead an ordinary life?”
By Colleen Dolan OAM