Seamus had a dream all his life to live in his own house. He wanted independence. He wanted peace. He wanted freedom from what he saw as the stigma of living with disabled people. There was plenty of scope for worry. Would he be lonely? Would he be able to call for help if he needed it? Would he be able to leave if the house went on fire? Would living on his own trigger a relapse in the mental health problems that had dogged Seamus all his adult life? Most of all, in these financially straitened times, can the service afford Seamus’ dream of living independently?
Nearly 20 years ago, Eric Emerson and Chris Hatton (1994) reviewed 71 studies of the quality of residential services for a total 2350 people with intellectual disabilities. They found that, on average, people who receive the kind of support Seamus was looking for achieve better results than people living in group homes, who in turn achieve better results than people in large residential settings. The picture is complex, because supported living services (visiting support services) tend to be for more independent people, and these are capable of achieving more with fewer resources.
However, in Australia, Stancliffe and Keane (2000) compared the costs and outcomes of people living in group homes with people with matching abilities receiving visiting support. Where significant differences were evident, participants living semi-independently, just as Seamus would want, experienced much better outcomes: significantly more social satisfaction, more frequent and independent use of community facilities, more participation in domestic tasks, and greater empowerment. Group homes were more expensive per person by a factor of five. There were no outcomes in which people living in group homes did better.
In an Irish context, we had an opportunity to work with 46 people with different levels of intellectual disability who were unhappy with their current service and wanted to move (McClean, O’Connor and Grey 2010). It was a great opportunity to explore what kind of service people were looking for, what models of services deliver the best outcomes for people, and what makes services do what people want them to do.
Thirty-one of the people who wanted to move were initially living in group homes or large residential settings. Thirty-seven dreamed of living in their own home, either on their own or with one other person. Only three people dreamed of moving in to a group home, and no one dreamed of moving to a large residential setting.
We also found, as expected, that large residential settings were associated with less choice, less community participation, fewer friendships and poorer quality of life than community-based settings. However, the study also found that smaller, so-called community-based group homes are not much better, and are just as expensive. Because many group homes are organised by the same service agencies that run large residential settings, it may be inevitable that they recreate the institutional care practices of larger institutions. This study found that people who live with their families and people supported to live in their own homes, with ‘drop-in’ support, have much more satisfying lives. Those in supported living had more choice. They also had more recreational or community-based activities. They had wider circles of friends. And they were much safer from violence by others. Even when we controlled statistically for differences in levels of disability, we found that group homes and large residential settings offered much poorer quality of life than that enjoyed by people who live in their own homes or people who live with their families.
Twenty participants moved towards a life of their choosing within the fifteen months of the project. Twenty-six were still waiting. The study illustrated how seemingly innocuous decisions by senior managers, often far removed from the lived experiences of the people who use services, can have devastating effects on the quality and direction of people’s lives. There is enormous variation in the quality of service that people receive, and this reflects variation in staff performance. The role of the manager is to articulate clear expectations for staff, not to take decisions for people with disabilities. Services can never be person-centred if decisions are made by people in distant managerial positions.
The worst services say, ‘We would love to help you live your dream, but we don’t have the money.’ The best services say, ‘We would love to help you live your dream, but we don’t have the imagination.’ The costs of services are usually held up as the major impediment to a move to a residential arrangement of choice. About 85% of the costs of a service are the salaries of staff. In order to create capacity for change, staff and families need to know how to calculate the costs of staff support for a range of accommodation options. In our study, annual individualised costs of direct support were calculated by identifying the number of hours of support given, the different types of support (day service, residential, outreach, Sunday support), the number of days support is given in a 28.day period, the number of staff giving support, the number of people who share the support and the cost per hour of each support type. In Seamus’ case this yielded the following estimate of individualised costs, while he lived in the group home and after he moved into a home of his own.
An individualised service for Seamus cost less, not more. Overall, even though some of the services included in the study are traditional large residential settings, the average cost of delivering person-centred (chosen, inclusive) accommodation across the whole group of 46 people was found to be €4542 extra per person. In our study, the strongest predictor of whether or not people moved to the life of their choosing was actually not money, but relationships. We measured this in terms of the working alliance between staff, manager and families. Services in which people achieved their goals were ones in which managers trusted their staff, and families and staff listened carefully to each other in a partnership of equals. Services in which people achieved their goals were ones in which families and staff could know the individualised cost of the service per annum, and could imagine how to spend that money better.
Seamus moved into his own apartment over a three-month period. He did so because he found a champion who made sure that his voice was heard. He did so because a manager trusted that what was important to him and what was important for him could be reconciled. And he did so because he was allowed to make mistakes. He started with one overnight at a time, and a support staff stayed with him until 11.00 at night. It was a worrying time. But gradually the support staff backed away earlier each night, after ensuring that Seamus cooked his dinner for himself, had his mobile phone charged, and knew how to call for help. It took a while for him to accept that the smoke alarm did not cause fires, but steadily he gained confidence. He has lived there for a year and a half now. Is he happier? Who can tell? Seamus was happy before he moved. But he is certainly living the life of his choosing.