Challenging Behaviour National Strategy Group

Challenging BehaviourNational Strategy Group Welcome Setting the Scene What it’s like for families Viv Cooper

Plan for the day To agree how we can be more co-ordinated and strategic in our approach to supporting children and adults with learning disabilities who present behaviour described as challenging

Families The majority of children and adults with learning disabilities and challenging behaviour live with their families.

Professionals tell us.. “Parents should not accept that there is no intervention available for their child’s self-injurious behaviour. It is without doubt possible to decrease self-injurious behaviour in all people with an intellectual disability to a point at which it does not impinge on their quality of life.” Prof. Chris Oliver

“What I’d say to parents who are seeing their child begin to self injure, is that they should not be afraid to seek help. ………So my advice to parents is don’t leave it too long, start searching for help as soon as you’re worried. It’s a perfectly sensible thing to be worried about and you do need specialist help for it.” Prof. Glynis Murphy

Family experiences… At school he had one to one assistance for most of the day. But had to wear a helmet to protect his head and face from injury. He wore arm splints to prevent injury from punching himself but this restricted his movement for other activities by splinting his arms rigid. I later developed a simple devise using a tube,( a length of lavatory extension pipe, from the builders merchant) 7 inches long and covered in a tubular bandage, this allowed him to have some freedom of movement in the arm but reduced the full power of the punch to his head. Harry accepted this and he has modified his behaviour now, he still wears the armbands, except in bed, only occasionally punching the head. At one time he was hitting himself up to 3,000 times a day. Parent contacting the CBF in August 2008

I am parent of Lucy aged 18 who has severe learning disabilities and autism, severe self injurious behaviour; hitting/punching herself in the face and head. Has lost sight in one eye and had retina reattached in the other. Reacts badly to noise particularly children's voices. Had 3 year fight with LA planning dept to build in very quiet location; despite support of Social Services and the other zillions of professionals involved.-- had to go through appeal process -- thank God we won. But as not an adaptation we do not qualify for Disabled facilities grant! How do they think we cope? working and full time caring is almost an impossible ask but we have no choice. Parent contacting the CBF in November 2008

I was told by a Doctor, “Don’t worry about it, they don’t hurt themselves!” Parent contacting the CBF in August 2008

“Our daughter is only 2 years old. We are very grateful for the help received (from CBF). Until now we were left on our own to struggle with almost no advice or support. Professionals had suggested a helmet for our daughter but we believed that this was not appropriate. (After watching your DVD) we realised that what we are experiencing with our daughter was something unusual and that we did need help. Professionals had told us it was a phase and that we had to ignore it. I will be pushing for our daughter to see a psychologist. We desperately need help with how to cope with her behaviour” Parent contacting the CBF in April 2007

My 21 year old Autistic son sometimes has severe self injurious behaviour. ie. biting deeply into his hands and arms ( they are covered in scars) head butting walls, gouging at eyes. There is nothing anyone can do to stop him, in fact, intervening will make the behaviour go on for longer. He has been observed by all sorts of professionals and we know he is in discomfort somewhere but locating it is sometimes impossible. I usually just have to wait for the behaviour to subside. It is heart breaking and frightening to witness and I will spend the rest of the day in tears, even though I try not to. Parent contacting the CBF in June 2008

“It is without doubt possible to decrease self-injurious behaviour in all people with an intellectual disability to a point at which it does not impinge on their quality of life.” Prof Chris Oliver

A family contacted us who have a 15 year old son with severe learning disabilities and autism who has displayed severe self injurious behaviour for a number of years. He is now also visually impaired with no sight in one eye due to a detached retina caused by the self-injury. He is currently at a 52 week school in England (near to family) – until recently he boarded during the week and went home (without support) at weekends. We have been advised that there is no psychological input at the school, only psychiatry (Risperidone) and SALT. The psychiatrist has said he has concerns as the young man is being cared for but his behaviour is not being managed.

At school he has 2:1 supervision 24 hours a day including CCTV in his bedroom. He has recently had both hands in plaster casts to prevent further injury to wounds on hands in addition to arm splints which are used for long periods on a daily basis. The family are very fearful of him losing his remaining sight as he communicates with large print symbols. His mother describes herself as “ at my wits end.” In addition there have been two child protection investigations against school care staff this year. The first resulted in two staff being dismissed. In the latest incident the relevant CCTV footage has been erased by staff. Due to the latest child protection investigation the school are no longer willing to support the young person overnight and his parents now have to support him at home every night (without support). Parent contacting the CBF May 2008-November 2008

What happened to this family? • We supported them to access an urgent assessment by a Clinical Psychologist • The Clinical Psychologist recommended that the child be sent to an assessment and treatment unit 150 miles away from his family

“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”

Vivien CooperChallenging Behaviour Foundation The Old Courthouse New Road Avenue Chatham Kent ME4 6BE 01634 838739 vivien@thecbf.org.uk

Challenging Behaviour National Strategy Group