Mindful that a number of the over 2,500 readers of this blog will have previously reflected on the issue of group living, I think it important to regularly reflect on its problematic nature. So stay with me on this, and do post your comments if I’m missing something here.
The problem with congregated support is that the very nature of it makes it much harder to achieve authentic choice for people, and much harder to engage in community life in natural ways. No matter how a support agency might try to dress it up as a service model steeped in choice and inclusion (and having run several support agencies in different countries where congregate support was a feature of at least some of our services, I have done my fair share of such self-deception) the fact is that when a bunch of people are required to live together there are inevitable compromises. Sometimes in life, such compromise is freely entered into. For example, many of us might have experienced shared living (and therefore a commitment to compromise) at various points in our lives, be it with family, with co-students, with flatmates, with partners. However, we do not typically make longer term decisions to live with people we didn’t know previously or without a deeper mutual commitment to share our lives.
If such imposed compromise of shared living weren’t enough, group homes have an extra constraint – the staffing arrangements. Most of us don’t have a procession of people coming through our daily lives who are paid to be there, and for whom our homes represent their workplaces. And most of us don’t have our daily choices shaped (and curtailed) by the relative availability of paid support staff, which is the inevitable consequence when there are less staff than people being supported. The fact that the paid support staff have to share their efforts across a number of people means that some choices cannot be entertained because a staff person cannot be in more than one place at a time.
Why on earth might we think that such arrangements are acceptable? After all, for those of us who don’t live in such constricted arrangements, we are unlikely to nominate such arrangements as our first choice should our circumstances change. Why do we persist in making congregate support the main way by which we support vulnerable people?
One answer, the easiest answer to come up with, is money, or rather the lack of it. Issues of recurrent funding for support is an oft-cited reason given by jurisdictions for placing vulnerable people in shared living arrangements, be it a group home, nursing home, or other ‘supported residential facility’. In my 25 years working alongside vulnerable people, I can’t ever recall a meeting between government and support agencies where the issue of funding didn’t come up. When we focus primarily on the issue of funding, we are making a fundamental mistake. Funding is not the main barrier lying between vulnerable people and a good life. A much larger issue that is stopping us from assisting vulnerable people into lives of choice and citizenhood is a lack of imagination. When presented with the challenge of supporting vulnerable people into rich lives, and with funding that seems modest, our typical solution is to group people together. This is profoundly unimaginative, so much so that it works against the values of choice and inclusion that most support agencies are meant to be subscribing to, and which characterise the personal standards that most of us set in our own lives.
If we authentically subscribe to the values of choice and inclusion, then funding levels need present no barrier. I have recently visited with agencies, in both urban and rural areas, who are accomplishing highly effective individualised supports, without congregate living, and without congregate doing, and without rich seams of public funding.
Among other things, what such agencies have in common is an unshakeable commitment to choice and inclusion, the capacity to imagine how this might be achieved despite the dramas of public funding, and the gumption to take action now.
I believe that there are many support agencies who have a sincere desire to be helpful in the lives of vulnerable people, and will happily subscribe to the values of choice and inclusion. Yet those same agencies often report they are constrained in their efforts by what the public funder is prepared to pay for. In which case, I strongly encourage those agencies to take a deeper look at the meaning of choice and inclusion, and how these can be achieved in ways that are uncomplicated by group responses.
I am very happy to talk more with any support agency interested in exploring now they might become more imaginative in supporting vulnerable people into rich lives of choice and citizenhood.
You are so spot on with your comments - how can vulnerable people possibly have a good life if they have to share it with other people they may not even get on with - not to mention the constant stream of support staff - who they also may not get on with but have to put up with. Thats why I will do all in my power to avoid that scenario for my son - who is very vulnerable and has to rely on people to give him full personal care support. But I make sure he gets the right people to support him and that they can stay for at least a year - before moving on - so at least he has a year of consistent support with people who know him well and that he also likes.
ReplyDeleteYes Robbi you are missing something. You have not asked those dedicated parents who provide the day to day care for the severely disabled. As much as we love our children we will wear out eventually and like you we deserve a holiday occasionally. Congregate living is an economic reality and does not have to be a bad thing per se ala http://www.camphill.ie/What-is-Camphill-p-6.html.
ReplyDeleteYou harp on about what the rest of us would choose. Well my son is not like you or I. He is a very sociable being and will never be able to use technology to communicate - he needs 24/7 care and face to face interaction. I cannot provide this for the rest of his life and nor should I be expected to. Time to leave cloud cuckoo land. If you want a taste of reality you are welcome to come stay at my place for a month. You would learn the full meaning of compromise because your life would certainly change!
Well said, Ronni! What really annoys me is the use of the generic term "disability". We have on one hand a person in a wheelchair with a PhD and on the other someone like my son, who has a cognitive capacity of a three year old. Yet there seems to be an assumption that the same framework is good for all and the same model of accommodation is right for everyone. The person with the physical disability can live independently within an accessible environment and perhaps an hour or two of in-home support. Someone like my son, when placed in this same environment is unable to SMS, go on Facebook, use the telephone, drive a car, use public transport or in any other way access his friends. Yet those friends are the mainstay of his life and social interaction is the most important thing he has.
ReplyDeleteI see every day of my life in my local community instances of people with an intellectual disability who are living desperately unhappy lives, stranded in the "community" with the most meager, inadequate support. This is subsistence living with the television as the only friend. These people are often highly social beings but they are cut off from society as a result of an ideology that says that anything congregate is bad.
I am very angry that advocates can make so much fuss over people who live in "institutions" but remain silent about people who have a mental age of a six year old and who are living alone with only one hour per day of support. If a six-year old child was left alone in a house for twenty-three hours a day, the neighbors would be ringing child protection. But if it happens to a PWD, it's called "community inclusion" and it's OK, it seems.
And you are right about Camphill Communities, which are doing great work all around the world but not in Australia (why is that, I wonder?) And many countries have wonderful village style residences for their intellectually disabled citizens run by churches and philanthropic organizations. Many parents desire this model because they believe it would best suit the social needs of their person. But parents have no voice or representation in this country and their wishes go unheeded. Paid advocates,who are often people with physical disabilities, tell us what it is that we want and must have.
Amen to that Harriet!
ReplyDeleteThe medical world now acknowledge that we understand our children with intellectual disabilites and their needs best. Why when it comes to where they would be happiest living others think they know better??