Right support, right time, right place….

1. Right support, right time, right place…. Viv Cooper The Challenging Behaviour Foundation

2. To cover.. • Understanding need • Working in partnership with families • Building support around the person • Proactive vs reactive strategies Beginning with: • Who are we talking about? • What do we want to achieve?

3. 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

4. What do we want to achieve? • Good outcomes for the individual Through a person centred approach to planning and delivering support & services, which are • Local • High quality • Flexible Policy into practice

5. Understanding the need: Early days… Diagnosis Information Behaviours School & respite

6. Locating support – what was needed? Access to local expertise Information and training A holistic approach Partnership working Long term planning

7. Locating support – what happened? 52 week school 275 miles from home High cost Planning - what next?

8. Working in partnership with families Families “...are usually the main source of love, care and support for children and adults with learning disabilities…… Even when people leave home they do not leave the family. Families continue to offer a lifetime of involvement, support and advocacy…” Valuing People Now (2009):P45

9. Why work with families? Commitment, love and support Long term Knowledge and expertise and history Holistic Shared aims & goals “I will always be a part of my son’s life – I know I am important to him even though he can’t tell me that in words. I know that come what may, I can rely on my family to always be there for me – and it’s even more important for him to have that too.” Parent

10. Remember… “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

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

12. Their experiences… a lack of local expertise & capability in understanding &responding to challenging behaviour difficulty accessing services unless in crisis a lack of support and training a lack of information to plan realistically, and hopefully, for the future; not being included as essential partners Scoping report: McGill Cooper & Honeyman (2010)

13. Parents tell us…. “It feels as though I have been thrown off a cliff into deep water and I don’t know how to swim. And all around me there are people who can help me, or teach me to swim. But I can’t get to them and they don’t help me, and I know that eventually I will go under” “Living with a child with challenging behaviour is a profoundly hard and isolating experience.”

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. We know what works We know what to do We know how to do it

15. Building support around the person • Understand their needs • Design a “capable environment” which includes: • Skilled staff support • Adapted physical environment • Learning new skills • Reviewing outcomes “.. A successful service looks like an ordinary home or occupation, when…it is a carefully designed & organised service dependent on a great deal of skill & management.” Mansell (2007)

16. What needs to happen? Early intervention Planning – across children and adults services Development of individualised local support & expertise Monitoring of outcomes

17. What do we need to know? Starting early… we must work together to Deliver evidence based practice Identify children at risk of developing behaviour that is challenging Translate identified need to development of holistic support to meet it Plan long term to meet the needs of those individuals & deliver good outcomes

18. We know what doesn’t work “I know how I would feel if suddenly I was taken away from all that was familiar to me and had to live with people I didn’t know who were in crisis and behaving in ways that were challenging…” “It was so traumatic when he was taken away to Winterbourne View, and then it just got worse, absolutely horrendous, and I can’t yet see the light at the end of the tunnel.”

19. Pathway options…. Option P Person centred needs assessment Input from range of sources Agreed outcomes Local support & service designed around person Monitor & review Option R Assessment of suitability for local existing provision Attempt to fit into existing provision Exclusion from local provision / service breakdown Search for out of area place Monitor & review Which pathway is more likely?

20. Daniel’s route: Reactive pathway • Local school & respite “not able to meet his needs” • Family getting to breaking point • Out of area 52 week residential school • 275 miles from home • Living with 13 other children • High cost – not contributing to local skill development • Lack of local planning for return (child/adult/education/social care/health/housing/workforce etc…..)

21. Changing direction: Alternatives to Institutional care • We know what doesn’t work • We know what does work • We know what we are aiming for BUT We need to change the “pathway”

22. Daniel is happy & leads an interesting life Local, close to family Adapted bungalow- HA tenancy Good staff support Exploring employment opportunities Circle of support Daniel’s route: Proactive Pathway

23. What works? A person centred approach Working in partnership Staff with knowledge and skill Good management & planning A focus on outcomes for the individual “.. A successful service looks like an ordinary home or occupation, when…it is a carefully designed & organised service dependent on a great deal of skill & management.” Mansell (2007)

24. Delivering the alternatives We need: Leadership Change management Commitment Partnership Planning – short & long term

25. What needs to change? Working together to…. • Focus on and invest in prevention & local support & service development • Commissioning (it is not purchasing!) • Registration & Monitoring • Effective safeguarding • Data collection that is useful • Clearer lines of ACCOUNTABILITY Collective responsibility What will YOU do about it?

26. Actions Post Winterbourne • Stop putting people in the wrong types of service • Invest in the development of quality local support • Sort out the funding • Only register appropriate services • Strengthen safeguarding

27. Actions - local • Evaluate services for people with challenging behaviour against accepted standards (Mansell; Unified Approach) • Clear requirements in contracts • Ensure there is monitoring of outcomes, and action taken when outcomes are poor • Support (and use) the charter

28. Quality monitoring….. “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

29. “Don’t keep asking me what my views are, or consulting me about this, that or the other or the latest new idea. 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

30. Contact The Challenging Behaviour Foundation, C/o The Old Courthouse New Road Avenue Chatham Kent info@thecbf.org.uk www.challengingbehaviour.org.uk 01634 838739 info@thecbf.org.uk