1. Challenging Behaviour Foundation Challenging Behaviour A family perspective

2. Challenging Behaviour Foundation The Challenging Behaviour Foundation Our aims include: Easily accessible information about all aspects of severe learning disability with associated challenging behaviour, including promoting the development of local individual support arrangements A first point of reference for families & carers and those working in the field To collate information and research from a range of sources, and aim to put it into practice To provide information to those who need it, and to link those who will benefit from joining up

3. Challenging Behaviour Foundation Challenging Behaviour Behaviour can be described as challenging when it is of such an intensity, frequency or duration as to threaten the quality of life and / or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion. (CB: a unified approach)

4. Challenging Behaviour Foundation The Challenge? The challenge is to carers, services and professionals to respond in appropriate and effective ways to overcome the ‘problems’ presented by the individual.

5. Challenging Behaviour Foundation James’ Story

6. Challenging Behaviour Foundation James’ childhood Epilepsy at age 2 ½ Loss of skills Tumour diagnosed aged 5 Surgery and post-operative complications

7. Challenging Behaviour Foundation The Impact on James Epilepsy “cured” Did not recognise his family Loss of skills Hyperactivity and poor sleep pattern Loss of capacity to learn Autism No speech or concept of communication

8. Challenging Behaviour Foundation Information & Support Very limited information and advice Surviving day to day Age 9 ½ - crisis point – unable to sustain family life Offered bed in psychiatric hospital- no other local alternative Told to find a suitable residential school

9. Challenging Behaviour Foundation School life How to find one? First school lasted 2 weeks Alternative found – but many miles from home Successful for James – happy & fulfilling But far from family Transition planning at 19 non existent

10. Challenging Behaviour Foundation A succession of failed adult placements. James was subjected to 3 residential placements None met his needs All were extremely distressing and damaging to him He is now in a rehabilitation unit

11. Challenging Behaviour Foundation What works for James A support service that has the right: Approach & attitude Skilled, appropriately supported staff Environment (Together = a ‘capable environment’)

12. Challenging Behaviour Foundation What works for James? James’ life has improved and the incidence of challenging behaviour has reduced.

13. Challenging Behaviour Foundation What Next To place James in a supported living service which provides a ‘capable environment’ To ensure that it is recognised that the aim is to provide appropriate support, not to ‘fix’ James

14. Challenging Behaviour Foundation What does James’ experience tell us? There are serious consequences for the individual and their family if we get it wrong We should be able to get it right by: -Using what we know about supporting people well -Learning from getting it wrong

15. Challenging Behaviour Foundation What do we know? We know a great deal about behaviour generally There is a lot of research around behaviour that challenges There is a lot of research around individuals who present behaviour that we regard as challenging

16. Challenging Behaviour Foundation Who is likely to challenge? Risk factors: Being male Having a severe / profound LD Having deficits in skills required for everyday life Having sensory impairment Having physical / mobility problems Having a diagnosis of autism Having severe problems with communication Having a genetic condition associated with intellectual disability Having been abused

17. Challenging Behaviour Foundation We know that… “…people of all ages with challenging behaviour do not have their needs adequately met” CSCI: The state of Social Care in England 2005-2006 “…Estimated between 20% and 66% of people with learning disabilities are given psychotropic medication. It is often used as a form of chemical restraint for behaviour management rather than to treat mental health problems.” Equal Treatment: Closing the Gap DRC 2006 “the failure to develop appropriate services has led to an increase in the use of placements which are expensive, away from the person’s home, and not necessarily of good quality.” Mansell 2 2007

18. Challenging Behaviour Foundation But.. “People whose behaviour challenges have the same needs as everyone else, in addition to special needs for help to overcome the problems their behaviour presents. They do not surrender their needs for personal relationships, for growth and development or for anything else because their behaviour presents challenge to services. They have the same human rights as everyone else.” Mansell 2, 2007

19. Challenging Behaviour Foundation What we know about families…. “… families are left to cope as best they can. The result is depression, anxiety, suicide, loss of hope... it is only at this crisis point, when it might be too late anyway, that social services may step in.” Papachristoforou, 2003 “For parents… the over-riding sense is of their being isolated, excluded and left to get on with a task which is too difficult or beyond the expertise of qualified professionals.” McGill et al, 2005

20. Challenging Behaviour Foundation Families tell us What it is like “Living with a child with a severe learning disability and challenging behaviour is a profoundly hard and isolating experience and one that seems to be largely ignored by society.” “My concern is that he gets forgotten when I am no longer alive to fight his corner. I always have to follow up the professionals & keep them focused on his needs. Too many mistakes in the past have left me with little or no confidence in the professionals.”

21. Challenging Behaviour Foundation What needs to change? The Key messages

22. Challenging Behaviour Foundation New Guidance says “Interventions should be delivered in a person centred context…….Multi agency and multi disciplinary involvement should occur in close partnership with families and other carers” Unified approach “Good services make particular efforts to involve individuals in their care, to use advocates and to involve families in person centred planning.” Mansell 2

23. Challenging Behaviour Foundation Recognise the person. ‘Instead of responding to the person we typically react to the behaviour’ – ‘Most of what passes as assessment seems to be denial about the mutuality of our common condition’ (Herb Lovett) ‘Our job is not to fix people, but to design effective environments’ (Rob Horner) ‘Difficult behaviours are messages which can tell us important things about a person and the quality of his or her life’ (David Pitonyak)

24. Challenging Behaviour Foundation Behaviour = Message ? The message might be: I am in pain ( physical, emotional, sensory) I am unhappy I am frightened / uncertain / anxious You aren’t listening / responding to me I hate it when you restrain me I don’t want to do this My life is unrewarding

25. Challenging Behaviour Foundation Valuing People Now “People with learning disabilities are entitled to the same aspirations and life chances as other people…..” “This means improving health & social care support, ensuring they are able to access education, work and leisure opportunities; and giving them the same opportunities as everyone else to live where they want, with whom they want and in safety. It means taking a human rights based approach.”

26. Challenging Behaviour Foundation Healthcare – James’ Experiences. “It’s behavioural” “Too distressing for him” Reasonable adjustments Perverse reaction to some sedatives Understanding is the key

27. Challenging Behaviour Foundation A Person Centred Approach For people like James, who cannot readily understand, predict or adapt, the delivery of care and treatment often requires significant adjustments. Early intervention is vital. Make use of information from family carers. (background information and history)

28. Challenging Behaviour Foundation Thank you for listening. Any questions?

29. Challenging Behaviour Foundation Contact details Challenging Behaviour Foundation The Old Courthouse New Road Avenue Chatham, Kent ME4 6BE 01634 838739 www.challengingbehaviour.org.uk info@thecbf.org.uk