Care for those with limited intellectual capacity (intellectual or multiple disability) has moved from ‘traditional institutions’ to ‘self directed approaches’(living in the community with circles of support).
Many traditional institutions were little more than confinements. They were built on very large blocks of land to help allay public fears, whilst the bureaucrats claimed the residents needed ample room for activities. In practice, the land was mainly isolation/privacy, as few outside activities occurred in comparison with the large land allocation of most institutions
This traditional isolation/privacy has been retained in many government mini-institutions – government group homes in the community. Community access for the residents of many government group homes, is often just a drive-around with staff in the front, and the residents in the back of the house mini-bus.
Life within many government group homes is ‘paranoid-silo-privacy’, where families are discouraged from knowing each other, or from knowing anything about the other residents. They are told, for example, their son or daughter enjoyed a co-resident’s birthday party. They are told their son or daughter went here or there with a co-resident. Names are never mentioned!
Those with almost any level of reduced intellectual capacity have a lifestyle many, many times less than the general population. They are effectively in confinement and isolation, given their limited lifestyle, through their limited ability and comprehension
They certainly don’t need more isolation in the form of the service provider inflicting ‘paranoid-silo-privacy’ on them. They need a lifestyle which is as open as possible, to compensate for the natural isolation created by their limited ability. They need an, ‘all-family-friendly-home’ and ‘Circles of Support’ to help break the isolation of their limited capacity. ‘Circles of Support’ are totally opposite to Paranoid-Silo-Privacy.
Parents are often the only people who take a great interest in protecting the interests of their sons and daughters. Yet we know that in order for people to have good lives into the future, it is desirable that they have friendships and relationships with other people who take a real interest in their lives.
People who have disabilities are more vulnerable and will be for the whole of their lives. They will need people in their lives, who like and know them well and even love them, who will stay close to them, advocate for them and ensure that their dreams for 'a good life' are fulfilled.
Service providers, especially government direct care services need to understand how and why their traditional ‘Silo-Privacy’ add to the natural isolation of those with limited intellectual capacity, and learn how to provide support to people, their family, friends and their support staff to aim for family friendly togetherness.
Parents have often held life long, protective, practical roles of all kinds. They often need to be shown that others can provide their family member with real quality of life care in an open and friendly environment, rather than silo style living practiced in many group homes – especially government direct care group homes.
Circles of Support increases the social networks for people who have been institutionalised, or are at risk of being institutionalised by ‘Paranoid-Silo-Privacy’ in group homes.
Circles of Support & Self Directed Approaches