1. Supporting individuals who display behaviour described as challenging: what do families want from support and services?
Viv Cooper

2. My experience as a parent
What we know from families who contact The Challenging Behaviour Foundation

3. The Challenging Behaviour Foundation
Registered charity
Focus on individuals with severe learning disabilities who display behaviour described as challenging
“Our vision is for children and adults with severe learning disabilities who display behaviour described as challenging behaviour to have the same life opportunities as everyone else.”

4. Who are we talking about?

5. Individuals
“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 a challenge to services. They have the same human rights as everyone else.” Mansell 2, 2007

6. What is 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’
A Unified Approach (2007)

7. What is challenging behaviour?
Some children & adults with learning disabilities display behaviour that may put themselves or others at risk, or may prevent them from taking part in activities in their community or having an ordinary family life. This behaviour may take the form of aggression, self-injury, stereotyped behaviour or disruptive or destructive behaviours.

8. What that meant to us… A range of behaviours Impact on family
Changes at home

9. What do families want? Information Good support
To be valued as partners

11. Support & services–what we need
Access to local expertise
Information, understanding & training
A joined-up holistic approach
Long term planning
We wanted support and services that fitted around our son, not services that he had to fit into – because he couldn’t fit into them!

12. Families say……
“…… every individual, irrespective of their disabilities or difficulties, has a success story to live - they should be valued and respected equally with everyone else in the community and be provided with the same opportunities - and the support they need to do this..”
But……..
“…the emphasis was often on attempting to extinguish the behaviour because of the effect it had on carers/ other patients or damaging the environment. Using medication or physical restraint was the usual response…”

13. Creating a “capable environment”
Building support around a person- not fitting them in to what is available
Getting the physical environment right
Getting the staff support right
Choice and control
Interesting activities
A “can do” approach that is outcome focussed
How would I feel if that was me…?

14. What would it be like if we got it right?
Individuals and their families would have the right support, at the right time and in the right place – and lead interesting and fulfilling lives.

15. Key question:
“I want support providers to ask themselves: ‘would you like to live your life like this? Would this be good enough for you? For your son, daughter or relative?’ If the answer is no, then you need to change what you are you are doing.”
Parent

16. “All I want for my son is that he has a good quality of life, with good quality support and good quality services.”
Parent
“Quality means doing it right when no-one is looking.” Henry Ford

17. The Challenging Behaviour Foundation,
Contact
The Challenging Behaviour Foundation,
The Old Courthouse
New Road Avenue
Chatham
Kent ME4 6BE