Challenge Summer 2015
THE NEWSLETTER OF THE CHALLENGING BEHAVIOUR FOUNDATION
The Path to Better Outcomes PAGE 4/5
Good services NICE guidelines, case studies of good services, and accessing support
Understanding challenging behaviour A summary of the CBF’s information on understanding challenging behaviour and positive behaviour support
Advocacy Medway Advocacy Project evaluation, and a family carer perspective
Your questions to the email network Advice from family carers about good support for someone with severe learning disabilities and behaviour that challenges
Get involved! Recent fundraising events, and our new Facebook fundraising page.
‘Challenge’ is the newsletter of the Challenging Behaviour Foundation, supporting those caring for individuals with severe learning disabilities whose behaviour is described as challenging
Dr Edwin Jones talks about how commissioning in Wales has led to better outcomes ‘Closer to Home’ (C2H) is a collaboration between Health, Local Authority Social Services, and the third sector in South Wales. It has successfully provided people with learning disabilities and behaviours that challenge with their own homes and assisted providers to implement Positive Behavioural Support (PBS). Supported Living ‘Ordinary’ houses are provided and adapted by registered social landlords. Supported living means that people have security, and the houses are personalised and homely. The houses are in people’s own communities, with easy access to many activities. Supported living is more cost-effective compared to ‘residential placement’. Commissioners informally pool budgets and carefully plan staffing with support providers and families so that revenue funding can be used more effectively. Social services care management teams and health counterparts regularly review and strategically plan for individuals. Positive Behaviour Support (PBS) Whilst ordinary housing in the right location provides the best foundation for service quality, how staff support people is crucial. C2H providers are required to implement PBS, and demonstrate a commitment to enhancing staff skills by enabling them to gain PBS qualifications. Staff use Active Support as a core ‘PBS primary prevention’ strategy. People participate in the typical activities of daily life such as shopping, cooking, community leisure and employment opportunities etc.
which range from going on a first date, using public transport, to maintaining eye contact for more than a few seconds. So far, the C2H collaboration has successfully provided 24 tenancies, with even more in development or planned. ‘Bryn’ used to live a very sedentary, almost nocturnal life in a residential home, where he was very anxious and agitated. There were mounting concerns regarding the way he was supported and the increase in his hyperventilation, destructive and disruptive behaviours. In his new C2H home, staff supported him to communicate more effectively, participate in a much greater range of activities, develop a consistent sleep pattern and establish his own self-help routines. Skilled, consistent support made things more predictable, reducing Bryn’s anxiety. This is an extract. To view the full article, go to www.bit.ly/closer2home
Dr Edwin Jones Service Development Consultant Directorate of Learning Disabilities
Impact of ‘Closer to Home’ There are countless examples of small but significant personal achievements,
We asked on Facebook, ‘What is good support? How would you describe ‘best practice’?’
learning useful signs, such as “finish”, and learning new practical skills such as waiting).
“I would say best practise is looking at the individual person, or the challenging issues, with multiple agencies so the best outcomes can be reached.” (Michelle) “Benevolence, empathy, skill, tolerance, respect, dependability and humour are my top choices. I think there are some things you can't teach people and in my experience most of my admired qualities seem to come naturally to someone who is good at this very difficult job. To make the best of everyone's talents though staff need really good support by their team. No one working in isolation can hope to give off their best without being supported themselves.” (Ian)
"This photo is excellent evidence of good support (see below)! It is of Jacob at a theme park with his support workers." (Wendy)
Thank you for all of your fantastic comments! If you’d like to feature in this column we’d love to hear from you! Look out for our posts on facebook.com/thecbf and @cbfdn, or send your comments to email@example.com
2 Challenge Summer 2015
Twenty years ago, my son went to a 52 week residential school because there was no local support or service that could meet his needs. Nine years living with his family and attending a local special school had built him a reputation for being extremely difficult to manage, a child with a range of behaviours including disruptive and destructive behaviours, self-injurious behaviours and behaviours such as hair pulling, biting and pinching. We were told that very few children displayed such behaviours, that his needs were exceptional and that we were unrealistic to expect that local support and services could cater for them. Families are still being told this. In the out-of-area specialist 52 week school I was surprised to find that, in contrast to what we had been led to believe, there was in fact a great deal known about challenging behaviour. Instead of viewing the problem as being located within the person, there was a lot of evidence about why the behaviour occurred – and more importantly, what could be done to reduce it. This included working out what purpose the behaviour served for the person (what it “got” them, for example being removed from a noisy room, or getting attention or a favourite possession) as well as teaching the person new skills and alternative ways to get their needs met (for example, being taught how to communicate through
It brought home to me very clearly that the knowledge in itself was not enough – it had to get to all the people who needed to know it, so that it could be used. Over the years, significant funding has gone into research that has resulted in a body of knowledge about supporting children and adults who display challenging behaviour – but much of it has been shared in journals and papers, mainly read by other researchers! The information needs to be translated into practical terms – “so what does this mean for people’s everyday lives, and how can we make sure that we use it and get it to everyone who will benefit?” There must be a commitment to actively share it – it is the practical application of the information that changes lives, and that is where there is a need for improvement. We need to make it much easier for everyone (families, people with learning disabilities, commissioners, providers and practitioners) to know what to do and how to do it. And that means providing a range of practical information in a range of formats, for a range of stakeholders. This edition of Challenge focusses on sharing and implementing best practice. There is general agreement that the current national learning disability policy, based on rights, independence, choice and inclusion, says the right things. But that policy must be translated into practice – and the current gap between policy and practice is too great. Guidance is an important start, but it is the practical implementation of it that will transform lives and really make a difference.
Vivien Cooper OBE Chief Executive and Founder of the Challenging Behaviour Foundation
CHALLENGING BEHAVIOUR FOUNDATION
ALL ABOUT THE CBF
Best Practice: What does good support look like?
Expert by Experience: Glenice Lake
To coordinate with the publication of our Early Intervention Project’s new resource, ‘Paving the Way’, our latest newsletter is on the theme of best practice and good support. ‘Paving the Way’ has been sent to commissioners and Heads of Service, and outlines a ‘pathway to good support’ with examples of successful services – you can read more on page 4. On the front page and page 5, Drs Edwin Jones and Freddy Jackson Brown outline services that they are part of, which are dedicated to delivering the right support, in the right place, at the right time. Advocacy plays an important role in ensuring that someone with severe learning disabilities who displays behaviour that challenges gets the support they need. Another of our projects which has delivered positive outcomes recently is the Medway Advocacy Project. An independent evaluation has just been carried out for the project, and you can read a summary on page 7. On the same page Balwinder, a family carer, tells us about her experiences of advocating for her daughter, Mindy, with the CBF’s support. The CBF has produced information sheets on good support and advocacy. We also have guides specifically about behaviour, which are useful for family members and staff who care for someone with severe learning disabilities who displays behaviour that challenges on a day-to-day basis. Go to page 6 for a summary of our information sheets on understanding behaviour and supporting behaviour change. You can find out how to access challenging behaviour support on page 6. Support can come from different sources, and sometimes the support needed comes from our peers. We have set up peer support networks for families caring for someone with severe learning disabilities who displays challenging behaviour – the Family Carers’ Email Network and the Family Linking Scheme. Find out more in our ‘Spotlight On…’ column on page 8!
About Us We are the charity for people with severe learning disabilities who display challenging behaviour and those who support them. We make a difference to the lives of children and adults across the UK through:
Our vision is for all people with severe learning disabilities who display challenging behaviour to have the same life opportunities as everyone else and, with the right support, to live full and active lives in their community. Our mission is to improve understanding of challenging behaviour, empower families with information and support, and help others to provide better services and more opportunities to people with severe learning disabilities who display challenging behaviour. To access our information and support, or find out more about what we do, call 01634 838739, email firstname.lastname@example.org, or visit our website: www.challengingbehaviour.org.uk
CHALLENGING BEHAVIOUR FOUNDATION
We recruited Glenice Lake as an ExE in 2014; she has now been on nine inspection teams. Glenice’s two youngest sons have severe learning disabilities and autism. Her sons’ care manager sees their supported living arrangements as a model of excellence, which she would like to roll out across the borough. Glenice has been asked to help CQC develop the inspection methodology for services for people with supported living arrangements. This is a pressing matter for the CQC as so many more people are opting for supported living rather than moving into care homes. Glenice says: “The shock of [Daniel and David] moving to their own homes has worn off now. They’re so happy. Their speech has really developed and what touches my heart the most is that they go out at night to the park across the road and lie in the cargo nets there and just watch the stars. They have a big garden, which they spend lots of time in; gardening’s their passion. We’re setting up a mini social enterprise for them to grow their organic produce and sell eggs from the chickens they keep. “The years of struggle, fighting and tears have definitely been worth it to get the right providers and to see them fly, and now I am far more relaxed. It’s given me such peace of mind I can now sleep through the night for the first time in years without waking up worrying about them. I’m also having a great time with my ExE work; it’s met the empty nest gap in my heart left by my boys moving out.”
Challenge 2015 Summer 3
PROVIDING AND ACCESSING GOOD SERVICES FOR PEOPLE WITH
NICE Guidelines The latest NICE guidelines on learning disability and behaviour that challenges have just been published, and there is a specific guide written for families and carers. To read the guidelines in full, go to www.nice.org.uk/guidance/ng11.
Paving the Way: How to develop effective local services for children with learning disabilities and behaviour that challenges 3. Provide evidence-based parenting programmes (Stepping Stones, Brighton and Hove) 4. Establish a local positive behavioural support services (Bristol Positive Behavioural Support Service)
Information and support: People with a learning disability should be encouraged to be as independent as possible. Both you and the person you care for should be given information about learning disabilities and behaviour that challenges, and the care and support available. This includes personal and practical help for the strain of caring. Understanding behaviour: Everybody providing care and support should understand what causes behaviour that challenges, and that this behaviour is a way for people to show that they need something. Assessing behaviour: Initial behaviour assessments should be provided for everyone, and then continuing assessments should be carried out as needed. Behaviour support plan: Steps required to support behaviour change and improve quality of life should be agreed as soon as possible and reviewed regularly. Help for behaviour that challenges: This could include ‘parent-training classes’, classroom-based support, or skills training for people with learning disabilities, depending on the situation. Medication should only be prescribed if there is a clear reason and system for review. Restrictive intervention is a last resort, only to be used if there is immediate danger of harm to themselves or others, and together with other methods of support.
5. Develop a local approach to crisis prevention (Ealing Intensive Therapeutic Short Break Service)
The Early Intervention Project is pleased to announce the publication of a new, free resource for commissioners and Heads of Service across education, health and social care. ‘Paving the Way’ describes how to develop effective local services for children with learning disabilities and behaviours described as challenging. It includes examples of good practice, outcomes, costings, and advice on how to develop evidence-based local services. The resource has been sent to Clinical Commissioning Groups (CCGs) and Special Educational Needs (SEN) schools, and we hope that it will provide them with the tools to make a real improvement to outcomes for children in their local area. We worked with children and young people, families, professionals, commissioners and academic experts to identify the key features of good local behaviour support for children (a ‘path to better outcomes’), and case studies which illustrate each of these features: 1. Establish a person-centred approach, right from the start (Wolverhampton Special Needs Early Years Service)
We know that effective early intervention can reduce the severity and frequency of challenging behaviour, improve quality of life, and also avoid the high costs of crisis intervention. This new resource is particularly timely with the release of other papers: • The Department of Health Green Paper ‘No voice unheard: no right ignored’ states that early intervention should be routine • The NICE guidelines on learning disability and challenging behaviour will set the benchmark for evidence-based support • The SEND reforms provide additional opportunities for a holistic approach to support and services to meet the needs of this group of children and young people We want ‘Paving the Way’ to be shared far and wide, to spread the message that it is possible to commission and provide good local support and services for children with learning disabilities and behaviours that challenge – and it is cost effective to do so! To read 'Paving the Way', go to www.bit.ly/eippavingtheway
2. Identify and respond to problems rapidly (Coventry and Warwickshire Community Learning Disability Team)
Help for health problems: People with learning disabilities and behaviour that challenges should be given a health check yearly by their GP.
4 Challenge Summer 2015
CHALLENGING BEHAVIOUR FOUNDATION
H LEARNING DISABILITIES AND BEHAVIOUR THAT CHALLENGES
Bristol Positive Behaviour Support Service (PBSS) Bristol PBSS was used as a case study for ‘Paving the Way’, as an example of an excellent local service for children with learning disabilities and behaviour that challenges. Freddy Jackson Brown, a clinical psychologist in the service, tells us why it works.
• Long-term planning – successful because our commissioners understand the need to plan years in advance Promoting good practice nationally is critical, as is ensuring suggestions for improvement are taken on and faithfully delivered. One way to support good practice more widely is to evaluate service efficacy against clear outcomes targets, e.g. using tools that show positive behaviour change and quality of life.
The Bristol Positive Behaviour Support Service (PBSS) delivers individually tailored therapeutic programmes to learning disabled children whose challenging behaviour placed them at Aaron during a therapy session risk of school exclusion and out of authority placement. For the last 10 years the Bristol PBSS has worked to support children and their family’s wellbeing and quality of life. The “I feel passionately about giving our kids the same life service has not only successfully kept most children in their opportunities as other children. This is a political and local schools, but has saved £1.8 million in the last 4 years social justice issue about making sure there is a place for alone. everyone in our society. I am immensely proud of the team I manage who work hard and creatively every day In order to deliver high quality services, we have found that as they seek to help children learn new skills and have a the key to success depends on a number of interlocking better quality of life. I feel angry about the lack of specialist elements: provision available for our families, who often have to • Good working relationships – with children and their struggle on alone, battling for even basic support and families, and other professionals and agencies care. We are a wealthy enough society to be able to provide • Clear functional principles – understanding the more for our most needy kids.” Freddy Jackson Brown principles behind PBS, rather than just a series of techniques, allows us to problem-solve when things Freddy Jackson Brown aren’t working Clinical Psychology Bristol Positive Behaviour Support Service
FAQ: ‘I’ve been told that no-one can help me with my daughter’s behaviour, what can I do?’ The full version is online here: www.bit.ly/1B7GLdJ, where you can find links to further information and a template letter to write to your Clinical Commissioning Group (CCG). You shouldn’t have to manage on your own - families have a right to support. It’s known that there are effective ways to change behaviour and that it’s best to start as early as possible. Services vary from area to area and it can take a really long time to get any help, which is frustrating for families. To access help you could:
Use NHS Services • If your daughter is under 18, the local Child and Adolescent Mental Health Service (CAMHS) are the NHS service that helps children and young people with emotional, behavioural or mental health problems. The service may have a range of professionals who can assess your daughter and offer some support or intervention. • If your daughter is over 18, there will be an Adult Community Learning Disability Team or Adult Mental Health Service that she can be referred to. Some areas have a local behaviour team dedicated to supporting people with learning disabilities. If you’ve been to the local mental health service or learning disability team and they have done all they can, ask them to refer to a specialist service for further help. There are specialist national services at the South London and Maudsley Hospital.
Find specialist help If you find there is no local or national support available, ask if the school, care provider or respite service has access to a behaviour specialist. The CBF have a list of independent behaviour consultants available on request that they could use to ‘buy in’ the specialist help. Some people may be able to choose to use behaviour consultants privately and pay for the service themselves.
Ask for the service you need Where an area has nothing available, people can ask the NHS to fund the health services they need. Write a letter to the Clinical Commissioning Group (CCG) to request a specialist in functional assessment to be made available as part of the local offer.
CHALLENGING BEHAVIOUR FOUNDATION
Challenge 2015 Summer 5
GOOD SUPPORT: POSITIVE BEHAV
Supporting Behaviour Change Challenging behaviour includes self-injury, hurting others, destruction, eating inedible objects, and things like running away or stripping. People with severe learning disabilities are more likely to show challenging behaviour, especially because of health problems, communication difficulties, environmental change, or needs not being met.
The Tizard Centre
Most 2-year olds develop a range of communication and social skills which enable them to get what they want and need more easily. Many children with learning disabilities do not develop these skills and are left with the same needs as other children, but are much less able to get them met.
FUNCTIONS OF CHALLENGING BEHAVIOUR
POSITIVE BEHAVIOUR SUPPORT (PBS) A Behaviour Support Plan makes it easier to identify arousal level and use proactive and reactive strategies (see below) to keep the individual happy.
PBS teaches more effective and acceptable behaviours to get needs met, so challenging behaviour is reduced.
4. Calming down
1. PROACTIVE: Support to stay happy
2. ACTIVE: Swiftly reducing anxiety
3. REACTIVE: Preventing harm
4. POST-REACTIVE: Calming, being careful
We have produced the information sheets: Understanding Challenging Behaviour: Part 1', 'Finding the Causes of Challenging Behaviour: Part 2' and 'Positive Behaviour Support: Part 3. These are free to download from our website (Go to www.challengingbehaviour.org.uk > Information > Information Sheets and DVDs > About Challenging Behaviour). You can also use the resource order form on the back of this newsletter, or contact us on 01634 88739 or email@example.com.
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CHALLENGING BEHAVIOUR FOUNDATION
VIOUR SUPPORT AND ADVOCACY
Medway Advocacy Project (MAP) Medway Advocacy Project (MAP) was a project run by The Challenging Behaviour Foundation and The Tizard Centre in Kent. We employed an independent evaluator to interview people involved in the project and tell us how we have done. Here is a summary – the full report will be on our website soon.
Individuals with severe learning disabilities involved in the project. The people who received advocacy lived in care services in Kent. MAP tested a person-centred, dual-model (one independent and one family member) of non-instructed advocacy to give the individuals an independent voice.
Objectives: 1) To train and support the advocates to advocate for the individuals; 2) To trial the model, 3) To share the results of the pilot and develop a resource for advocacy organisations.
•Evidence of the benefits of long-term, consistent, person-centred advocacy for individuals with severe learning disabilities and complex needs. •Valued supervision for advocates, showing the importance of ongoing support and guidance. •Advocates acquired transferable skills and abilities. •Development of a well-received training programme •Some success in including family advocates.
•Recruiting and retaining advocates. •Complex relationships with service providers and local authority. •The project was difficult to manage; as a pilot, much was unknown, and steering group members had to invest a lot of time. •Challenges in creating and maintaining relationship with family/friend advocates.
“Looking back it doesn’t look like a lot of changes were made, but I think [the advocates] did make a big difference. It can be the little things that make a big difference to people with a learning disability” Steering Group member
Advocating for Mindy manager at the home and we had endless meetings to discuss things but nothing was being done. We didn’t know what to do as there were so many issues but no was listening to us. The relationship with the home was starting to deteriorate so I turned to CBF support workers. They were fantastic, they had hours to listen to my concerns and they helped me to draft my letters and understand jargon. We discussed DoLS, safeguarding issues, and what approach to take in meetings. Eventually, after about three years, Mindy was moved to a residential home in the borough, which is only a 5 minute drive from my home.
Mindy and her sisters on holiday
My daughter Mindy is 26 years old. She is a very affectionate, bright, sociable, energetic young lady who loves going out and being with people. Her diagnoses are epilepsy and severe learning disabilities. At times her behaviours can be very challenging, the main one being eating cigarette butts. After spending some time in a new residential placement, things started to deteriorate for Mindy, and she became extremely challenging every time we dropped her back. At the same time, Mindy’s best friend’s mother decided to remove her son suddenly and kept him at home. Mindy was emotionally very distressed and upset but I couldn’t keep Mindy home as both my husband and I were working. She couldn’t communicate with us but it was clear that she was terrified of going back to the residential placement after every weekend she spent home. I spoke to Mindy’s care
I decided to become a volunteer for the CBF as I could not put a monetary value on the tremendous support that I received from them. I want to support other parents who might be going through what I went through because I know how hard it is to find someone who understands. I support the CBF by manning information stalls at events and conferences. I deliver workshops as a family carer and I give talks to family carers and psychology students. I have also attended advisory group meetings and have become a Family Link volunteer too. Balwinder Sandhu Family carer, co-trainer and CBF volunteer
CHALLENGING BEHAVIOUR FOUNDATION
Challenge 2015 Summer 7
Peer-to-Peer Support Family carers often tell us that they feel isolated and alone because of their caring responsibilities. So, we offer two systems of peer support to enable families caring for people with severe learning disabilities and behaviour that challenges to talk to each other: the Family Carers’ Email Network and the Family Linking Scheme. The Family Carers’ Email Network is a place for family carers to ask questions, and share advice and experiences with others who are in similar positions. Questions and answers are moderated and anonymised when they come into the CBF office, so family carers can feel comfortable asking advice on any issue they like. We’ve had questions about challenging behaviour, iPad apps, strong furniture, becoming a Deputy, renovating your house…the possibilities are endless! “We are like an extended family. We genuinely empathise with each other.” The Family Linking Scheme brings together family carers who have ‘been there’ and are able to provide a listening ear, information and ideas. We try to match family carers with a Link Volunteer who is in, or has been in, a similar situation – we have recruited volunteers with a variety of experiences so we can find someone who understands what you are going through. Our Link volunteers are trained to give emotional support, and can keep in touch by telephone and email at times that suit you. “I definitely feel less isolated. You don’t know people like that exist – with a wealth of information relevant to your situation.” For more information on the Email Network or Linking Scheme, go to our website: www.challengingbehaviour.org.uk >Supporting You > For Families. You can email us to be sent an application form: firstname.lastname@example.org to join the Email Network and email@example.com to join the Linking Scheme.
8 Challenge Summer 2015
YOUR QUESTIONS FROM THE EMAIL NETWORK
: Is it true that a child with severe autism who is non-verbal and self-injures cannot be tested to see what age they function at?
A1: No – my son is non-verbal and self-injures and was tested a couple of years ago. A2: No it is not true, cognitive tests can be carried out, however as in the case with my own son, he won't participate in any formal tests, so we can only surmise about his cognition. There are many different methods of supporting communication (Speech and Language Therapists will help you more) e.g. PECS, total communication, TEACCH, talking mats – all can be tried to see how your child responds consistently. A3: I suspect the problem you’re encountering is how the question is posed. Very often it isn’t useful to
: My daughter has put on weight after moving into her own flat, I think partly due to poor cooking by her carers. Does anyone have any solutions?
A1: My friend drew up a four-week menu plan for their son. It contains all of his favourite food and two options a week for ‘treats/going out’. This helps with the shopping and budgeting, and is a healthy food plan that means he knows what he is going to get. A2: The thing that most helped my daughter was to ask at review meetings for a dietician to do some training and give advice to staff. Weight gain can also be a result of rispiridone.
describe function in terms of age, particularly as a person’s functioning in different areas might be wildly different. My son is a case in point – he is quite good at some things, quite bad at others, is surprisingly good at some things, and in some areas where you might expect him to be pretty functional, he isn't. In terms of expressing how functional he is at school, as he's off the curriculum they use P scales (he is 12) and these are pretty comprehensive but they don't necessarily tell you a lot--they are more a way to describe what he can be observed to be doing. A4: My 17 year old son was tested last year according to the Vineland Adaptive Behaviour Scales. The testing was done by the Educational Psychologist at an Epilepsy Assessment Unit. My son is non-verbal and has SLD, visual impairment, epilepsy and various other medical conditions, but they could certainly carry out a test.
A3:I found a Jamie Oliver book very useful. It is very basic and even has instructions on boiling an egg or making a basic tomato sauce. I’ve found there is a huge problem with the overuse of tinned food and jars of sauces. A4:We had a similar problem when my daughter moved into her own supported living flat. At first, I batch cooked a range of healthy meals, which I froze in small, individual portions. After 3 years, the staff now do this with some input from her. I also printed out pictures of meal options – she picks one and then puts it in a box, so she can’t keep choosing the same meal. We also agreed certain rules such as no ‘treat’ foods in the flat, but she can choose these when she is out. I requested that if staff were eating their own meals in her house that these didn’t include ‘treat’ foods.
Recommendations for specific products in this article are made by people on our Email Network; inclusion doesn’t constitute endorsement by the CBF. Readers are encouraged to evaluate the benefits and risks of each product before use. These questions and answers are taken from our email networks. Want to join the debate? Membership of the networks is free to both families and professionals supporting children or adults with severe learning disabilities. Application forms are available to download at www.challengingbehaviour.org.uk or email firstname.lastname@example.org.
CHALLENGING BEHAVIOUR FOUNDATION
News A roundup of what’s been happening
Volunteer Awards We are so grateful to all of our family carer and professional volunteers, who commit time and effort to everything from fundraising, to speaking at events, to giving professional advice, to supporting other families. To say thank you, we have made badge awards for our most committed volunteers – a coloured badge for the ‘Volunteer Award’, silver for the ‘Continued Commitment Award’, and gold for the ‘Exceptional Contribution Award’.
Sue Parsons and her CBF volunteering badge
Volunteer Award: Ian Penfold, Balwinder Sandhu, Sarah Roberts, Steph Chapman, Dawn Rooke, Kate Farmer, Martin Jordan, Helen Cherry, Wendy Fiander, Catie Bennett, Shirley Bennett, Emma Garrod, Ann Earley and Theresa Joyce.
Continued Commitment Award: Jill Jack, David Jack, Jackie Edwards, Jan Seamer, Sue Parsons, Diana Cutler, Cliff Hawkins, Jen Fookes, Audrey Giles and Kate Sanger. Exceptional Contribution Award: Lawrence Ireland, Sue Carmichael, Peter McGill and David Congdon
PBS Competence Framework The PBS (Positive Behavioural Support) Coalition has produced a PBS Competence Framework. This resource provides a common knowledge and associated actions necessary for the delivery of PBS to people with learning disabilities and behaviours that challenge. It is designed to be used by family carers, professionals and researchers to develop tools for PBS education, the recruitment, retention and training of staff, and assessment tools. Find out more and download the free Framework here: www.pbscoalition.blogspot.co.uk
Gavin Harding: UK’s First Mayor with Learning Disabilities Selby, in North Yorkshire, have appointed Gavin Harding as their mayor. He is the first person with learning disabilities to achieve this in the UK. Mr Harding is also probably the first UK councillor with learning disabilities; he is starting his second term as a Labour town councillor for Selby Northward. He has said he wants to “make sure as chair of town council meetings that we act in the best interests of the public as much as we can and serve the community”.
Petition to the Scottish Parliament Beth Morrison, a family carer, has lodged a petition calling on the Scottish Parliament to urge the Scottish Government to introduce a National Guidance on the use of restraint and seclusion in all schools. The petition has followed from parents’ concern at what appears to be the inappropriate use of restraint, including physical restraint, in special schools attended by their children. On March 17th, the Scottish Parliamentary Petitions Committee took evidence from Beth Morrison, Ian Hood (Learning Disability Alliance Scotland) and Kate Sanger (representing the CBF). The Committee has agreed to write to a number of key organisations. You can see full details of the petition and its progress here: www.bit.ly/scotpet
CHALLENGING BEHAVIOUR FOUNDATION
WHAT’S ON THE WEB
Innovative, interesting or useful resources available free online BILD PBS Animation 'An Introduction to PBS' is a short animation that gives an overview of PBS and how PBS approaches work in practice when supporting an individual. www.bit.ly/bildpbs
Contact a Family Videos
Contact a Family’s YouTube channel has a collection of videos relevant to the families of people with a learning disability. www.bit.ly/cafvideo
List of Behaviour Support Teams Are you looking for somewhere to get behaviour support for your family member? Check out our list of Behaviour Support Teams in each region. www.bit.ly/bsteams
Find Me Good Care Find Me Good Care is a website set up by SCIE (Social Care Institute for Excellence), with advice about finding good care alongside contact details of organisations and services. www.scie.org.uk/findmegoodcare
Involving Families in Workforce Development This resource is for organisations whose staff work with people with learning disability, and includes case studies of when families have been involved successfully. www.bit.ly/involvefam Found something interesting online you’d like to share? Email it to email@example.com, post it to our Facebook page or tweet it to us @CBFdn.
Challenge 2015 Summer 9
In spring we ran an illustration competition open to individuals with a severe learning disability. The response was tremendous, thank you to everyone who got involved. Winning illustrations will be printed onto CBF fundraising merchandise, which will be sold at events and retail outlets, both on and offline. All work entered into the competition will also be exhibited at a show* in Chatham later this year. For more information and to find out where you can buy one of these beautiful products be sure to follow our Facebook page, www.facebook.com/thecbf, or email firstname.lastname@example.org to sign up to our Supporters News. *If you would like to sponsor one of our events Laura would love to hear from you!”
With the help of the 41st Medway Towns’ Scout Group we held a bag pack and collection at ASDA Chatham earlier this year, raising £223.19. Collections are a vital source of income for the CBF, if you would like to hold a collection on our behalf at your local supermarket then please contact Laura who will be happy to help you organise this – email@example.com.
Fundraising Auction Page We have a new fundraising page on Facebook, www.facebook.com/cbffundraising. Here you will find all the latest CBF fundraising news, events and auctions of donated items, including Eurostar and Odeon cinema tickets. To be in with a chance of winning some fantastic prizes and to help us raise vital funds, please ‘like’ the page and share with your Facebook friends, thank you.
Challenge Events A big thank you to our fantastic supporters who have been busy fundraising on our behalf across the south east.
5k Fun Run
Ben Matthews ran the Kingston Breakfast run back in March and raised a whopping £926.25!
Tom Moore ran the Vitality Hackney Half Marathon on Sunday 10th May, raising a brilliant £328.75 so far.
Team George’ took part in a 5k fun run in Crystal Palace on Saturday 9th May. George and his family and friends have so far raised over £1,480! Thank you to George’s Mum, Sue Utley, a CBF Expert by Experience, for organising this fundraiser.
The Challenging Behaviour Foundation is the charity for children and adults with severe learning disabilities whose behaviour is described as challenging and those who support them. We rely on people donating their time and money to us to continue our work. If you want to find out more about fundraising, or have an idea for a fundraising event, contact Laura Brown on firstname.lastname@example.org, or 01634 838739.
10 Challenge Summer 2015
CHALLENGING BEHAVIOUR FOUNDATION
Resource order form
Thank you A big thank you to Sophie McKane, who has been volunteering in our office for the past few months. Sophie has been a huge help with sending out Paving the Way, and has taken on a huge variety of jobs for which we are very grateful!
100 Club winners
Please note that all of these resources can be downloaded free of charge on our website: www.challengingbehaviour.org.uk All our information and resources relate to the care of individuals with severe learning disabilities who are described as having challenging behaviour. We are happy to send resources free of charge to parents/ unpaid carers. Cost
The DVDs provide practical support from professionals and family carers. Academics or learning disability professionals give expert guidance while family carers share their experiences. The DVDs introduce each topic clearly, explaining the key ideas and offering a wealth of practical information. Everybody Matters DVD
February 2015 Robert Howard St Albans
Self-Injurious Behaviour: DVD
April 2015 Daniel Cooper Kent
CHALLENGING BEHAVIOUR DVD RESOURCES
Recent winners of the CBF 100 club, winning £25 each were:
March 2015 Meryl Matthews Isleworth
An Introduction to Challenging Behaviour: DVD £31.50* £31.50*
Communication & Challenging Behaviour: DVD £31.50* Challenging behaviour – supporting change: DVD Learn about the causes of challenging behaviour, and how to use a functional assessment to put appropriate positive behavior support strategies in place. (Two disc set)
*Free to parents/unpaid carers. Registered charities: DVDs £16.50 (or £33.00 for Challenging Behaviour – Supporting Change). Price includes postage & packing in the UK only. Outside UK p&p £7.50 per item.
CHALLENGING BEHAVIOUR INFORMATION SHEETS
Have your say We welcome articles from parents and professionals. Please get in touch if there is something you would like us to write about.
The information sheets are written by experts and provide practical support on a wide range of topics. Each information sheet contains a one-page summary, as well as a longer document providing more detailed information. The information sheets are suitable for both family carers and professionals. Understanding Challenging Behaviour: Part 1 Finding the Causes of Challenging Behaviour: Part 2 Positive Behaviour Support Planning: Part 3 Communication and Challenging Behaviour
Health and Challenging Behaviour
While every care is taken in the compilation of this newsletter, the Challenging Behaviour Foundation cannot be held responsible for any errors or omissions, nor accept responsibility for any goods or services mentioned.
The use of Medication
© The Challenging Behaviour Foundation. All rights reserved.
Further Information for Family Carers
The use of Physical Interventions Specialist Equipment and Safety Adaptations Impact of Caring on Families Planning for the Future
All information sheets are available free of charge on the CBF website. To order by post please add £1.00 per sheet*
Ten Top Tips BASIC INFORMATION PACK (consisting of the 12 information sheets listed above)
The following additional information sheets are not contained in the basic information pack but may be downloaded from the Challenging Behaviour Foundation website or ordered separately:
Booklist for Professionals
Difficult sexual behaviour amongst men and boys with learning disabilities
SUB TOTAL CARRIED FORWARD *All resources are free to parents/unpaid carers. Prices include postage *and packing in the UK only.
/ Continued overleaf...
/ Resource Order Form continued... Cost
SUB TOTAL CARRIED FORWARD
Getting a Statement (Wales & Northern Ireland) £1.00* Making Decisions - The Law
For Families: Getting an EHC Plan (England)
For Professionals: Developing an Education, Health and Care Plan (England)
Getting Legal Authority to Make Decisions
Pica (eating inedible objects)
Mental Health Problems in People with Learning Disabilities
Did you know…..? • We are a registered charity and rely on donations, grants and fundraising to finance our work.
IN-DEPTH RESOURCES Paving the Way A guide for commissioners on how to develop effective local services for children with learning disabilities whose behaviours challenge
• We do not charge family carers for our services or resources.
8 Ways to Get a House A guide to help families think about the different types of accommodation and how they are funded.
• To keep costs down much of our work is carried out by volunteers.
A Guide for Advocates (England and Wales) A comprehensive, practical guide for professional advocates; or family carers advocating for their family member.
PBS Study Pack for Schools and Colleges The Positive Behaviour Support study pack is designed for teachers to increase understanding of behaviour. Note: This resource is only available for schools and colleges.
Planning for the future: information pack England / N Ireland / Wales
• Regular giving by standing order makes your money go further by keeping down administrative costs.
For anyone planning for the future of children aged 12 and upwards (transition), or concerned about the support needs of adult family members. Read more about all our in-depth resources online at www.challengingbehaviour.org.uk
DONATION - please consider a donation to support our work. All proceeds go towards helping families caring for individuals with severe learning disabilities whose behaviour challenges. Thank you. *All resources are free to parents/unpaid carers. Prices include postage & packaging in the UK only. Outside UK p&p £7.50 per item.
The CBF – how you can help
Please consider making a donation to help us support more families. If you would like to donate regularly, please tick here to receive a standing order form. Gift Aid means we can claim back the tax on your gift (25p for every £1 you give) at no extra cost to you. Please tick here to confirm that you would like CBF to claim tax paid on this gift and any eligible past or future gifts. Please note that to be eligible for gift aid you must pay at least as much UK income tax as the amount that will be claimed by all charities you donate to within the tax year. Please indicate if you are a parent or unpaid carer. If you are a registered charity please provide your charity registration number
• You can ‘Gift Aid’ your donation if you are a UK tax payer, this allows us to receive 25% extra on top of your donation without any further cost to you. • You can fundraise for free! There are a number of ways to donate and raise money for us without spending any extra money. See our website for details. Your support really does make a big difference to us. So, thank you! For more information please email email@example.com
Name Organisation Address
Postcode Telephone Email (please print) Your personal data may be held on computer and will be kept in accordance with the Data Protection Act 1998 under which we are registered as a data controller. This data will not be passed on to any third party without prior consent.
Please make cheques payable to the Challenging Behaviour Foundation and return to the Challenging Behaviour Foundation, The Old Courthouse, New Road Avenue, Chatham, Kent, ME4 6BE Alternatively, go to www.challengingbehaviour.org.uk to order online.
The Challenging Behaviour Foundation Registered charity number 1060714 (England and Wales) Address: The Old Courthouse, New Road Avenue, Chatham, Kent, ME4 6BE Email: firstname.lastname@example.org Tel. 01634 838739 www.challengingbehaviour.org.uk
'The Path to Better Outcomes'. We are the charity for people with severe learning disabilities whose behaviours challenge.