Viv Cooper The Challenging Behaviour Foundation (CBF) Supporting & speaking up for families: getting the right support in the right place at the right time Viv Cooper The Challenging Behaviour Foundation (CBF)

To cover…… children, young people and adults with learning disabilities who display behaviour that challenges what works the systemic challenges working together to drive and deliver change Drawing on Own experiences as a mum Experiences of families who contact the Challenging Behaviour Foundation (CBF) CBF work

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

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)

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.

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

Support & services: what families need Early 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!

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.

Working together – co production Core principle of CBF is partnership working, because: More can be achieved by working together Understanding the different strengths, opportunities and challenges of other stakeholders increases chances of success All parts of “the system” need to work well in a co-ordinated way to deliver good outcomes for people

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 – it’s even more important for him to have that too.” Parent

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

Working together: Co- Production Is …..ensuring everyone is engaged from the outset, in design and development, providing individualised tailored support to enable all to fully participate Is not….deciding what to do, then asking people to agree to it ……..making all the big decisions, then asking people about the little ones

Remember…. “Of course it makes sense to all work together – we should all be aiming for the same thing..” Parent “There is no greater, more determined ally than a ‘mum on a mission’ ” Mother of disabled daughter

We need to move away from the well-trodden path Lack of local, evidence-based support and services to meet families’ needs (McGill, Tennyson & Cooper, 2006) Family stress and emotional difficulties (Hastings 2002) , high risk of children experiencing adverse life events including exposure to poverty, abuse, bullying and exclusion (Emerson 2004 &2012) High cost services, often far from home, leading to restricted adult lives (McGill, 2008) 16

Towards the route to improved outcomes Local person-centred support to meet child and family needs in early childhood. Children able to experience the same opportunities as their peers and to participate in their community Specialist support available to train and support family, carers and school staff in evidence-based approaches such as Positive Behaviour Support, alongside other interventions and support relevant to the individual child. A smooth transition to a full, well-supported adult life in the community, maintaining family relationships

We know that… It is possible to commission and provide good local services for children with learning disabilities whose behaviours challenge- and it is cost effective to do so. Paving the Way “As a result… our child is now sleeping at night, she is calmer, happier, and levels of self injurious behaviours have reduced a lot. The whole family feel happier and less stressed now- it has had a positive effect on all of us” Parent

We know that…. We all have the same goal – good outcomes for individuals If we all work together, we can deliver the right support in the right place at the right time BUT There is no magic wand – it takes commitment, investment and hard work!

What works? A person centred, PBS 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) 20

Engaging & working with Families Individual level Service level Strategic level Strategic Level Individual Level Service Level

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

“Quality means doing it right when no-one is looking.” “ 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

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