This concept marks the final step in the recognition of the rights of persons with continuing needs that started with the processes of de-institutionalisation and community care. It turns the user of services into a purchaser of services. It makes the service providers accountable to the person, not to an agency or to the government. It removes many of the barriers that make it impossible to become full citizens.
Many groups and sectors have been involved in making the innovation a reality. Yet, although it is being used by over 15,000 persons, there is no official policy in existence. The central impetus of the invention has been the working relationship of consumers (persons with disabilities) and government officials and the University of Calgary rehabilitation studies programme.
Such grass roots innovation may be easier in a country like Canada which has ten provinces able to experiment with concepts on a small scale. Although small scale innovation may be more difficult in Britain, there are an increasing number of instances where the funds needed to prevent unnecessary institutionalisation are given directly to the person or family to purchase the services needed. In the UK such direct payment exists as a well-kept secret. In the past four years, however, persons in Alberta have had access to a broker who can act as an independent agent able to work for the consumer in the process of securing and implementing direct payment.
This does not mean that the current method of providing services, where agencies are funded to provide services to a target group, will or should disappear. For those lucky enough to fit into group programmes or preferring to have agencies design and provide services, this alternative will continue. It does mean that there is an alternative for those who are not currently being adequately served by agencies and for those who are willing to assume the responsibility of managing their own services or supports.
The term 'broker' conveys a business connotation that makes some uneasy, and in reality the broker does encourage a small business approach to providing customised services for persons with disabilities and their families. A broker may be an increasingly important person as privatisation continues in Britain. With direct grants to seniors who require institutionalisation, the individual and the family can easily be lost in the rush to the market place.
There are two versions (with many variations within each) of personalised funding (funding allocated to the individual based on specific needs) that could work in the UK.
He and I would have had to separate in order for me to qualify financially for the help I needed to stay at home. We wouldn't get a divorce, so I had to go to an institution, where I lost control of all the little things that make life human - when and what to eat, shopping, someone to talk to in the early morning light.
Behind the walls that shut out my world I found others who shared my quiet anger and together we put our hopes into beliefs of independent living, of taking charge, of supporting each other and anyone else who shared our dreams.
Each one of us brings our strength. My outward stubbornness comes from an inner quiet and trust - that there is someone up there. He is a sculptor - when he takes away a little bit here he adds a little bit there, moulding and trying to make a better person. I just have to keep looking for the chances that his changes bring.
Now I'm taking charge and living on my own, in spite of your ideas that 'people like me' should be in institutions because it is 'efficient' - even though I can hire my own staff to live on my own for much less; in spite of your need to protect me, to see me as sick, to look after me when I want to look after myself; and my own feelings of guilt that I am causing those who love me pain and anxiety because of my need to risk, to be on my own, to be in control of my life.
I may need someone to do the things I can't. I may need to use machines more nowadays, but I've got it together, I've taken charge, done what I had to do. I'm still just an ordinary woman, living each day as it comes. I just wish I could physically reach out and touch someone.
Shirley Garth
It is also possible, given the Kent experience with community alternatives for persons with serious behavioural problems, and a number of private, non-profit-making schemes run by parents, that a model similar to the popular Community Living model in Canada may be feasible in Britain. In this the agency broker prepares funding estimates with the person or family and assists them to secure the funding from a central government source. The agency then works to provide services to the client as requested.
It is imperative within this community living model to establish an independent board of parents and hopefully consumers to monitor the services and be advocates on behalf of the person and families where they cannot do this for themselves.
If individuals are not able or prepared to manage their services on their own, they have a number of options - they could hire an agency to provide the services for them (as is the case in privately funded special care), or they could have the broker (or volunteer committee of people they select) assist in setting up and monitoring services for them.
In Canada the role of supporting persons in their quest to establish their own lifestyle seems best suited to the emerging Independent Living Centres. The Calgary Association for Independent Living pioneered an exciting set of services to help disabled persons manage their own lives; including a computerised information bank of practical support that people may be looking for - from attendants, to people able to alter clothing. This data bank is run for their peers by persons with disabilities and provides the essential safety net for those willing to try to make a go of it on their own.
27 persons whose needs were considered too difficult to handle in the community made such dramatic improvements that many of us are now reconsidering whether agencies and institutions inadvertently create many of the problems that disappear when the person is listened to.
These Centres support any person with a disability and therefore do not easily fit into the charity game that seems to prefer to fund simple causes - eg learning difficulties, the blind etc - they do not fit easily in the competition between specific disability groups for the most worthy of charity dollars. Most independent or integrated living Centres prefer to remain small, use volunteer effort, earn money or find new funding sources to make sure that they can act as advocates on behalf of the people they are supporting.
Given the current climate in Britain, it is quite conceivable that freelance service brokers could emerge who would act with or on behalf of the person to assist the family to secure funding, to locate or develop services, and could be available to help negotiate contracts or to assist the person or family to monitor services. In Canada there are freelance brokerage services emerging for persons with disabilities and for aged persons. To date, we have not solved the questions related to payments for freelance brokers, but nevertheless a committed group are pioneering the options.
Nancy Marlett, 4th Floor, Education Tower, University of Calgary, 2500 University Drive, Calgary T2N 2N4, Canada (tel 403 284 7511). In the UK: c/o School of Education, Open University, Milton Keynes, MK7 6AA, Bucks (tel 0908 652649).