People With Challenges: Human Approaches
Author: Anna Eliatamby
We are still not doing enough to include people with challenges in the community. We remain perplexed by them and we offer few options that really help. Providing for people with learning difficulties and challenges has become a business. We forget that it is sometimes tiring to work with people with challenges and we don’t sufficiently protect them from the risk of abuse as evidenced by Winterbourne.
The free market approach, which was advocated a few years ago, led to a wide variety of service options, some of which seem to have been generated largely for the benefit of those providing, e.g. large scale institutions. Some of these options have been valuable and made a difference but there are other ways in which we can support people with challenges.
Moving people with challenges out of area usually means ‘I have run out of ideas of how to help, I am tired of being responsible for this person’. In over thirty years of working for people with challenges, I have rarely seen anything in an out of area placement that could not be provided in area. People are often moved because the only responsibility that remains is a financial one with oversight and the professionals can breathe a sigh of relief. People do sometimes need to leave their home but this can offered in different ways, going on holiday, bringing in a new set of professionals to support the person, moving the person to a new home in area.
There are often specialist challenging behaviour teams and one of the first was the team created by Jim Mansell in Kent in the mid 1980’s to support local services bring back people from Darenth Park Hospital when it closed. The team’s function was clear and designed to help local services build their expertise. However this aspect is not always remembered. Some present day teams take over from local services until the person is deemed well enough to be returned to the care of the local teams. It is true that people with challenges and their supporters sometimes need extra support but this can be provided in ways that do not necessitate the existence of a specialist team. At the very least, they should be part of the community team and the community team should be skilled up. A specialist team can offer in-depth assessments but, again, local teams can be trained to learn these assessment and diagnostic skills.
Support for people with challenges can become specialized and require the need of experts. However, Herb Lovett said,’ an expert is some-one with a different zip code’. People often have the formal and informal expertise that is needed but feel it is not enough. We need to stop and think about the need for experts and how many people often surround and overwhelm the person with challenges.
The term has become institutionalized. The original phrase was ‘behaviours that challenge the system’ and, over time, it became ‘challenging behaviours’ and it has become static in its interpretation and usage. We don’t often see that behaviours are actually an interaction between the internal and external aspects of the person and their social and physical environment and circles. We have come up with the phrase ‘reactional behaviours’ as an alternative and we are seeing if this makes us think differently enough.
We forgot that people with the label ‘challenging behaviours’ are complex human beings who live in a complicated setting with complex people in their lives.
When there is something not right internally with us, this often has an impact on how we interact with our world and, sometimes, our external world of people and environment can have a negative effect on our internal state which then impacts our behaviour. This is a reality that we rarely use when we try to help some-one with challenges.
We prefer to use the term ‘reactional behaviours’ to describe the range of actions that some-one can use to indicate that all is not well in their life. Reactional behaviours include observable behaviors, e.g. aggression and those that are unobservable, e.g. hallucinations. They occur as a result of the person’s internal condition and/or their interaction with external physical, social and environmental factors. They can include appropriate behaviours and their impact will vary.
Excerpt from forthcoming material © Civitas Vera 2013
The Winterbourne Report clearly outlines a value base of community options and the mechanisms needed to offer quality lifestyles. Much of it is good common sense. Why did we have to let people suffer to get to this realization? Much of what is said was in the original Mansell report and the Kings Fund publications of the 1980s. Why have we, collectively, let history repeat itself and allowed people to be abused?
Admittedly the Winterbourne report does contain much practical information of how to support people with challenges in their own communities. If this is followed properly and acted on, then people will be able to live full and proper lives.
What it did not address is that professional and informal supporters are often frightened and perplexed when supporting some-one with challenges. It is this fear and confusion that can lead to people supporting inappropriately and not thinking clearly. My experience of supporting people with challenges, first as a nursing assistant and then as a clinical psychologist, is you need to be empathic, free in your thinking and confident when working with people with challenges. The mindset is clearly articulated by Erwan Lagedec in his book, Leadership in Unconventional Crises.
It is also important to remember that it can be very frightening and perplexing to be the person with challenges. You may not understand why you are doing the things you do. You might scare yourself, you may want to be more ordinary but find it difficult to change your more inappropriate aspects. How many of us, as adults, find change easy?
In conclusion, we need to be more human and ordinary in the way in which we think about and support people with challenges. Do we not have challenges ourselves and for how many of our challenging behaviours do we seek professional help?
The publisher is The Centre for Welfare Reform.
People With Challenges: Human Approaches © Anna Eliatamby 2013.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.