Jayne Leeson, MBE – CEO Changing Our Lives
When professionals talk about services and supports for people with learning disabilities, have you ever thought about what they mean by ‘community’, when they say things like, ‘we don’t want people in services, we want them supported in the community’? This conversation might arise when traditional, segregated services such as day services are closed, but can equally arise when individual packages are being developed. I have always advocated for the closure of traditional, segregated services and for the development of individual packages which enable people to lead ordinary lives, accessing opportunities that the rest of us take for granted. I’ve had conversations for years about people needing to lead equal lives, in ordinary homes, in ordinary streets but what I have started to hear lately is not support to be members of the local community, but support by the community. Although I am the first to argue for an ordinary life, what I do not advocate is expecting people to do this without any support. It is of course true that for some individuals once they have been well supported to be part of, for example a local amateur dramatic group, they won’t need or particularly want ongoing support, as they may want to just be part of the group like anyone else. However, many people will need some sort of ongoing support to sustain this lifestyle and that is ok.
I chose to write this blog because recently I have had conversations with professionals where they talk about people being supported by the community, not in the community. I have even heard the phrase. ‘We want the community to care for people’. They are not taking about people being enabled to live in ordinary homes, being employed, having friends etc. where there are funded resources to enable this to happen. They are talking about simply replacing traditional services with universal services, with no additional support or funding being put in place. They mention library services, accessing the leisure centre, joining a club; in short accessing other services but ones located outside of social care, in the local town. So in this scenario the town has become the replacement day service. This is not about community inclusion but the replacement of one service with another. As a colleague said to me as I was writing this blog, if you were to visit people with learning disabilities who are being moved into this new model of service in 6 months, practically all of them would be doing the same things because staff who work in services, think in terms of services. So if one person has a bus pass, they all have bus passes whether they use them or not. If one person is introduced to amateur dramatics, they all are. If a connection is made with a local voluntary sector group, for example, a litter picking group, this becomes a standard item on a menu that people are offered and invariably when speaking to people and asking them what they do in the day, many will tell you they litter pick.
Undoubtably one of your first thoughts will probably be that this is a cost cutting exercise and this may well be the case. However, you will come across professionals who genuinely don’t want people in segregated services. They feel this with a passion and look instead to a construction of their own making which is a warm and embracing community. This community is presented as a geographical place which is interconnected, full of opportunities and positive experiences. In their minds it is out there waiting for you and welcoming you when you find it. Community in this sense has become mythologised and what’s more, I would argue in the world of learning disability, has become somewhat of an ideology which is fiercely held onto by professionals who have worked within services their entire lives.
We have years of experience of working with individuals with learning disabilities, ensuring they have bespoke support packages so they can do things in the local area and have the same opportunities for an ordinary life as anyone else. We equally have years of experience working in the heart of communities with anyone and everyone – leaders in faith networks, parents who run breakfast clubs, communities of Black men in barbershops, people from different walks of life who fight racism, friends of disabled people who champion their rights. We know that if sufficient investment and skilled facilitation is in place, individuals in the community achieve great things in relation to supporting each other and at times disabled people or people who find themselves in need of some support.
However, we are under no illusion that these individuals are rare. Most people, especially the people we work with in economically deprived areas, are too busy getting themselves through everyday, or else may have no inclination to help others. So when professionals talk about community, what are they imagining? Are they seeing lines of people wanting to be part of the lives of people with learning disabilities? Speak to anyone with a learning disability or autism, and they will tell you that although they have good experiences with people they know in their local area, the guy at the corner shop, the lady in the cafe etc., they also experience more than their fair share of disability hate crime and discrimination. I am in no way arguing that people should not be enabled to access opportunities in the local area or develop friendships with local people who are not disabled; indeed this drive sits of the very heart of our organisation. What I am arguing is that being supported by the community does not happen without skilled facilitation.
A few years ago we were funded by the Cooperative Foundation to ‘community connect’ isolated young disabled people into their local area. The approach we took centred around matching an individual with people in the community with similar interests and supporting the individual whilst a personal connection developed. This often needs several attempts as we know from our own lives, we will try something new and we may like it or not like it, we may get on with people or we may not. There was one young Asian man who wanted to garden. We found a men’s shed on an allotment where white British men aged 50+ came to garden and chat. After several meetings, this young man became part of this small community and the men, who initially had quite limited understanding of Asian communities, had gone from thinking ‘Asian people don’t garden’ to supporting this young man to contribute and had become friends with him. This connection took time, it was forged in personal relationships and it required trust and a willingness to embrace low level risk.
There is a world of difference between developing a personal connection with another human being and encouraging people to simply access the community via universal services, such as libraries. The first approach, whilst time consuming, can bring about real and sustained friendships and opportunities; the second can result in the person being bored at home as they may be afraid or concerned about going out, isolated and potentially at risk. As a colleague of mine recently said, ‘Whilst it’s easy to say people need to be supported by the community, this is very difficult to achieve in practice’. I suspect many who advocate this from within services have no practical experience of facilitating such connections or working in a community setting.
I am naively hoping that this mini trend we may be seeing is peculiar to our experiences and if anyone reading the blog has similar experiences, please get back to us at ask@changingourlives.org However, in times of social care and health funding crises, I suspect it is more widespread and may be aimed at new people who are being assessed for health and social care support or people being reassessed. My final thought I would like to leave you with is that even in a funding crisis there is scope to be creative, and often a funding crisis is when people are most creative and a small amount of funding invested wisely can unlock ordinary life opportunities. Better this than expecting people to just walk up the library and occupy themselves!
