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As we work for and support people with differences, we can forget to stop, think and reflect about what we do and how we support people, so our values are at the centre of our thoughts and actions.

Here are some articles that will help. Please let us know what you think of them.

A place for me with all of my talents, differences and challenges.

(Photo courtesy of Vlad Bagacian)

My work with and for people with challenges began in the 1980s and much of it centred on helping people move from restrictive settings to more open homes in the community. We felt we were at the forefront of a huge change that had started with de-institutionalization. In our own way, we tried to keep the person and their hopes and aspirations at the very centre of our thinking and acting. Our intentions were good but I am not sure that we thought about the impact on the person that much.

How frightening it must have been to move from a locked ward to an ordinary house? To working with new staff? To never have the chance to say a proper goodbye to the people you had lived with for many years and to the staff who had supported you. I remember visiting the locked ward in a large institution that was scheduled for closure and my only thought was how I was on this mission to help one of the last people who still lived there. I now realise that the person I was supposed to have helped must have felt bereft at the loss of their life style.

I am not forgetting that some of the institutions, and the care that was given, were awful. But, for healthy psychological growth, we need to have opportunities to say goodbye to our past and resolve any outstanding issues. This we did not always give or create the psychological space for people to make their peace with the past.

Some of our individualized services helped and two of the people for whom I worked are no longer known as people with challenges. The reason for their success was that they were helped by very caring and creative colleagues who understood them and had interventions to support them that were valued based. There was also a degree of happenstance. One person moved from a locked facility (hundreds of miles away), where they had been under Section, to an ordinary house near their family. This person usually become challenging at such times. However they became sick with flu just after getting to the house and so they learned that staff could care positively without having to test them.

It is an indictment that I can say that the hopes of a true ordinary life were only properly achieved for two of the people I served. There was some improvements for others but these were not always sustained for various reasons. Often, the professionals involved changed (including myself) and the incoming staff had a different perspective which was not helpful.

So why do we have two models, individualized services for people and large institutions for people with challenges? Supporting someone with talents and significant difficulties takes courage, creativity and a willingness to stay with the person as they grow and develop and when they have problems. We also need to be patient and expect gradual change; the same patience we accord ourselves.

We need to be dedicated to the person even when it becomes tiring and risky. We need to own the problems that arise when a person’s service goes into crisis. Instead, we often decide to move the person to an institution that apparently offers some magical remedies that are supposed not to be available locally. Experience tells me that the main reason for moving someone to these institutions is that people are tired, weary of the risks and responsibilities and want to decrease these. And so a move to an institution is selected, often regardless of cost, because the only responsibility that remains is a financial one and some oversight.

I have never, in all the years I worked in services for people with differences, visited or worked in an out of area facility that was providing something that could not be made available locally.

This dilemma has come around again, partly because of recent scandals in some of these specialist institutions. I am extremely glad that the problem of placing people with challenges in institutions has been recognized and that funding is available to reverse this situation. I hope that that those involved in bringing about this change, at the commissioning and provision levels, do not repeat history and really place the person at the centre of their thinking and doing.

A degree of courage, willingness for positive risk-taking and creativity is essential. The person for whom the service is being developed needs to be present at all meetings where decisions are being made about their future life. If they cannot be present or easily articulate their needs, then their views need to be represented. Whatever is created for them must suit them and their hopes and aspirations for their home as well as their own perspective on being a citizen of the world. One person I met liked small paintings and posters and he had about 50 in his bedroom and he knew exactly where each one was. This was accommodated by his friends, family and staff including taking photos of the position of each one so that they could be put back in the same spot after the room had been cleaned and painted.

Here are some important questions to keep asking when designing a new support service with and for the person with difficulties, challenges and talents: What do they want and need? How do we include family and friends? How can we provide for them in a real way and not just provide what we are comfortable with?

Many thanks

© Civitas Vera (2020)

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