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Challenge Summer 2016


Prevention and Positive Steps PAGE 4/5

Projects and progress The Early Intervention Project, the Big Lottery Project, CBF volunteer awards, and a sibling story

PAGE 6/7

Overcoming negative experiences Trauma support, family stories, and the the CBF’s new Legal FAQ


Advice from family carers Your questions to the email network, and the CBF’s new information sheet, ‘Teaching New Skills’


News updates A round up of what’s been happening, and what’s new on the web

‘Challenge’ is the newsletter of the Challenging Behaviour Foundation, supporting those caring for individuals with severe learning disabilities whose behaviour is described as challenging

Going On Family Days Out! We asked Mary Busk, a family carer, to share her experiences of taking her son, Alex, on family days out… Over the years we have worked very hard to have positive experiences as a family, including days out. Over time, with trial and error, we have come to realise the things that Alex does like (e.g. trains and being outside, but not wandering aimlessly around) and does not like (e.g. castles or museums) and we plan around that. For example, last summer we went to Devon, choosing a place to stay that had a lot of outside space. Whilst there, we went to a garden with a railway, the South Devon Railway, to the seaside, and to Stonehenge. Part of the preparation is researching what places are like in advance. What is there going to be for Alex to do and can he cope with it? So we choose to go to places where we know we will have something to enjoy and that will not cause him stress. Or we choose somewhere with space where we know he may find it OK with our support. We do not always show Alex pictures of places we are going (he might not really understand, as he has very complex learning and language and communication disorders) but we do say one word prompts for him, like “train”, “seaside”, “lunch”, and use the “first and next” planning, to explain the order in which we are going to do things. We also have to think about lunch as he eats only a limited range of food – do we eat first, and go in the afternoon, or bring some food and hope to get drinks

Mary and Alex and other refreshments there? We sometimes have to use lunch or the promise of an ice-cream as a motivator. We also make sure that Alex is settled first before we might decide to break into two groups, as we did on some of these visits. The days were not always sunny which was fine as it meant places were slightly less busy. Top tips: Ignore people who may stare or comment (Alex does not understand which helps). We have a car now, which helps with accessibility. If you don’t have a car you can still do things like go for a walk outside or go to the local park, or to an autism-friendly showing at the local cinema. You could also try to find an inclusive swimming club where all the children can go. We did this for Alex (they provided one-to-one support) and his siblings went too at the same time. With support, over 7 years, he learned to swim 400m on his own. We are very proud of him. Mary Busk Alex’s mother



Your Comments

A Full and Active Life

We posted the following on Facebook:

and encourage and support him to take part – it more often than not results in Daniel and his staff having a good time. Of course, this takes a lot of careful planning. An apparently simple trip to the shops can be a disaster if you try to go when it’s too crowded, and an outing to a favourite theme park is best planned so it doesn’t coincide with school holidays, for example.

‘According to one article, published earlier this year, "the general population spends over 90% of their time engaged in meaningful activity, whilst people with a learning disability spend only 33% (without active support)." (www.bitly.com/meaningful-activities) We wanted to know: what do you think is needed to help support people with learning disabilities to engage more in meaningful activities? What are some of the challenges?

A few years ago, we noticed a worrying trend at the CBF. Families who contacted us reported that their relative’s budget had been cut and daytime activities became almost non-existent. Whilst some can be “free” (e.g. a walk in the park) many have a cost (e.g. swimming, entrance fees, gym or club membership etc).

Here are some of the responses we got to these questions… “Good leadership, without which Staff choose the easy option. 1) Some staff don’t have the patience to support someone to do [activities] themselves – so failure to implement a consistent approach. Getting staff to appreciate the difference between caring and enabling. 2) Not offering choice in a meaningful way. 3) Risk aversiveness. 4) Cost – even if something is free there is still the cost of travel. Public transport doesn’t get you where, and when, you need to be. This happens even in individualised services where there is no excuse not to do the right thing.” (Jan) “We need to be careful about who gets to define what ‘meaningful activity’ is. Things that look meaningless to us might be meaningful to the person doing them. Much better to ask whether they get to do “enjoyable activities” instead.” (Andrea) Thank you for sharing your opinions and experiences. 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 communications@thecbf.org.uk 2 Challenge Summer 2016

Vivien Cooper

Most of us have busy lives. We balance our time between family and friends, work and leisure, things we have to do and things we choose to do. We know that getting this balance right is essential for our wellbeing, and impacts on our physical and mental health. Most families have the same aspirations for their children, whether or not they have a disability. Mine are that my children are happy, and lead interesting and fulfilling lives. The only difference between my disabled son and his non-disabled sisters is that Daniel needs more support to enable him to do this. Throughout his life, Daniel has been supported by many different staff. Those few who have (for whatever reason) attempted to sit around “minding” him have quickly discovered that they will not be able to just sit around for long. Daniel responds to boredom in the same way as we all do – he will find a way to occupy himself. This can involve a whole repertoire of behaviours, most of which are damaging in some way – to him, the environment, or his staff. And, unless we are careful, Daniel is blamed for the challenging behaviour, when in fact it is a reasonable response to a situation he has no other way of communicating about. In contrast, when Daniel is supported by people who assume that he wants to spend his time doing interesting things –

We contacted the late Jim Mansell, who provided us with a robust statement, explaining that ‘the availability of a rich and varied programme of activities, in and out of the home, well-supported by staff who are skilled in person centred support, is likely to be essential for the safe support’ of a person with severe learning disabilities. Professor Mansell’s letter* concluded: ‘I cannot imagine that anyone with expertise or experience of supporting people with challenging behaviour would think that activities were unimportant or optional. Withdrawal of such support […] should not be undertaken at the behest of unqualified officials.’ As always we need to apply common sense, and ask ourselves: ‘how would I feel, how would I react, if I was in the situation we put people with learning disabilities in?’ Spending time engaged in activities that are meaningful to us is not a luxury; it is simply having a life. Vivien Cooper OBE Chief Executive and Founder of the Challenging Behaviour Foundation *If you would like a copy of Jim Mansell’s letter to the CBF, please contact us on 01634 838739, or email info@thecbf.org.uk




Prevention and Positive Steps

Overcoming Problems – a family story

Taking part in activities, engaging in the local community, having access to leisure opportunities – these things are important to us all, not just to people with severe learning disabilities. However, we know that many individuals with learning disabilities face additional barriers to accessing these things – so what can we do to overcome these barriers?

Veronica Dunn, a family carer, shares her son’s experiences of poor support, and argues for the importance of taking a pro-active approach…

This summer edition of Challenge is themed around “prevention and positive steps”, and contains information about early intervention, planning positive experiences for your loved one, and about helping people with learning disabilities to overcome negative experiences when they sadly do occur.

It is a sad fact that many of us who are parents of children with special needs live our lives with the shadow of "what happens when I'm not here?”

Our lead story is from Mary Busk, a family carer, sharing her experiences and advice about how to have positive experiences as a family, such as days out. On pages 4 and 5, we have a series of articles about some of the projects the CBF has been running over the past few years, including information about resources from our Early Intervention Project, and the Big Lottery Project. We also have the results from our recent volunteer awards, and a family story about being a sibling.

When a supported living model was adopted to address my son's challenging behaviour I decided to put this to the test by taking a fairly hands-off approach; after all, there was a whole host of “professionals” involved in achieving a positive outcome.

On pages 6 and 7, we have a series of articles about overcoming negative experiences, including a professional opinion, family stories, and a summary of the CBF’s new Legal FAQ. On pages 8 and 9, we have a selection of latest news and questions and answers from the email network. We also have a summary of the CBF’s new information sheet, ‘Teaching New Skills.’ We hope you find the content of this newsletter useful. If you have any comments or other feedback, please email us at communications@thecbf.org.uk. If you would like to suggest a topic, or contribute an article to a future edition of ‘Challenge’, we would love to hear from you.

About Us

Supporting You


Driving Change

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 info@thecbf.org.uk, or visit our website: www.challengingbehaviour.org.uk


• Arriving on the moving-in day to find numerous workmen rewiring the house; this was traumatic for my autistic, over-anxious son • Support staff with no cooking skills

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:


I would strongly advise that you don't try my hands-off approach – and be thankful you are still here to make a difference to the life of your loved one. I was advised many years ago to "under promise and over deliver.” My experience of supported living was the opposite and included:

• Financial processes not being in place, so basic goods for the house couldn't be purchased, and no money was available for food shopping. My son was living on cheap pizza; I only found this out by checking the fridge and discovering it was empty. It has taken a huge amount of pressure to achieve progress. Two years down the line we have addressed many of the problems, but with support staff changes it can feel like two steps forward, one back. Achieving a fairly basic quality of life is still a work in progress. Veronica Dunn Family carer

Challenge 2016 Summer 3


CBF Projects The Early Intervention Project When the Early Intervention Project began in 2013 one of the aims was to provide information to families and professionals about the importance of early intervention for children with a learning disability. Evidence-based early interventions, delivered locally, can reduce challenging behaviour and improve the well-being of children and their families. As the project approaches the end of its final year, we want to take this opportunity to explain some of its outcomes… On 11th March 2016, the Challenging Behaviour National Strategy Group (CB-NSG) held its bi-annual meeting, attended by over 60 professionals and family carers. The theme of the meeting was ‘Early Intervention and Prevention for Children, Young People and Adults.’ The meeting began with three videos, produced by the Early Intervention Project, which feature the voices of children and young people: 1. ‘Why do they hurt?’, in which Calum describes his experiences of restraint at school (www.bitly.com/why-do-they-hurt); 2. ‘Miss Home, Back Home’, in which Tianze describes being in an Assessment and Treatment Unit (www.bitly.com/miss-home-back-home); and 3. ‘What do you like doing?’ (www.bitly.com/what-do-youlike-doing), in which children explain how they can be supported to achieve their goals.

The Paving the Way website – www.pavingtheway.works Four days after the meeting, which showcased learning from the project, the CBF and the Council for Disabled Children launched a new website: www.pavingtheway.works. The website provides an online space for information and resources produced by the Early Intervention Project. These resources include stories about what families have found helpful, case studies, and examples of good practice to inspire commissioners and professionals to develop better services. The website also features a blog which is updated on a regular basis with news and opinion pieces.

Examples of resources from the project The Paving the Way booklet describes how to develop effective local services for children with learning disabilities and behaviours described as challenging. It includes examples of good practice, outcomes and costings, and advice on how to develop evidence-based local services. The Positive Behavioural Support Information Pack for Family Carers has been developed with the PBS Academy. It aims to explain what PBS is and what it looks like in practice. The resource provides questions to ask to check that PBS is being delivered well in the setting you are looking at, and guidance on how family carers can find out more, including advice on training and practical resources. Free access to all the resources can be found at: www.pavingtheway.works The Big Lottery Project For the past three years, the Big Lottery Fund has supported the CBF to extend our volunteer, email and social networks. From the beginning, the aim was to be able to reach more families in need of support and information about challenging behaviour. One of the ways in which our outreach has increased is through the Local Champions. The Big Lottery Fund allowed us to train family carers to represent the CBF at events throughout the country. Over the past three years, our Local Champions have attended countless events, and have reached out to more than 1800 families!

who ‘gets it’ can make a real difference. Many family carers who use the scheme are left feeling much better supported. The CBF still has several Family Link Volunteers who are available to offer support. If you would like to find out more information about getting support through the scheme, please email support@thecbf.org.uk, or visit our website: www.challengingbehaviour.org.uk/cbf-articles/latestnews/more-listening-ears.html We try to match family carers based on the age of their relative who has severe learning disabilities, and based on the kind of situation they are in. You can always still use the CBF’s Family Support Service if you have a new issue you want to discuss.

We also used funding from the project to train and support family carers to become Family Link Volunteers. For a lot of people who care for someone with severe learning disabilities, there are times when they can feel isolated, stressed or worried.

The funding for the Big Lottery Project has now ended, but the work of the volunteers whom we have trained continues! Both the Family Link Volunteers and Local Champions will continue to help the CBF support families and circulate information in the future.

The CBF’s Family Link Volunteers talk regularly on the phone with family carers who have a relative with severe learning disabilities. Over the past three years, our Family Links have provided support to 26 family carers on an ongoing basis. They can’t offer all the answers, but speaking regularly to someone

If you are interested in booking a Local Champion to speak at an event near you, please contact volunteering@thecbf.org.uk

4 Challenge Summer 2016



Volunteer Awards! Our volunteers make a phenomenal difference to the scope and the impact of our work. To give just a few examples, in the past year alone our Office Volunteers have helped us to send nearly 5,000 resources, our fundraisers have raised over £9,000, and our Campaign Families have met directly with national health and social care leads, providing them with an essential window into families’ lived experiences. This year, for the second year running, we decided to celebrate Volunteers Week (1st -12th June 2016) by sending out awards to some of our volunteers. Here is the full list of winners below – congratulations to all! Our Volunteer Award is given to individuals who have been volunteering for the CBF for at least 2 years, and have been active all that time (apart from breaks for personal reasons). This year’s recipients were: Local Champions – Chinyere Kejeh, Danuta Gillespie, Ify Akuebue, Diana Richardson (also a Family Link Volunteer), Andrea Sandow (also on the Review Panel), Linda Dickinson (also in the Family Carer Working Group and on the Review Panel) Family Link Volunteers – Clare Pierce, Julia Genders, Maria Magadan (also in the Family Carer Working Group) Campaign Families – Jane Alcock, Shahana Hussain, Claire Garrod-Pullar (also a ‘Give as You Live’ fundraiser) Trustees – Diane Lightfoot (Trustee), Nick Gore (fundraiser and Trustee Advisor) Our Continued Commitment Award is given to individuals who have been volunteering for the CBF for at least 5 years, and have been active regularly throughout. This year's recipients were: Balwinder Sandhu (Local Champion and Family Link Volunteer), Dawn Rooke (Local Champion and Family Link Volunteer), Kate Farmer (Local Champion), Sarah Roberts (Local Champion), and Steph Chapman (Local Champion) Our Exceptional Contribution Award is given to people who have given a lot of time and energy to the CBF, have made something significant happen, or have gone out of their way to help over and above what was asked for. This year’s recipients were: Jackie Clarke (for her ongoing contribution to the Challenging Behaviour National Strategy Group, and for providing invaluable support to another family, whom she had not previously met, during an especially difficult period lasting many weeks) and Diana Cutler (for being a founding Trustee of the CBF, providing crucial legal expertise and input during the charity’s early stages, and for continuing to give her time and support generously in her role as a Trustee over an incredible nineteen years) A huge thank you to all of our amazing volunteers – we couldn’t do it without you. We look forward to being able to give further awards to more volunteers next year.

A Sibling Story The CBF Family Support Team has been looking at ways we can provide special support for sibling carers. Our Family Support Intern, Eleanor Parker, shares her experiences of having a young sibling with a severe learning disability.

upmost respect for them, and other family carers too. While typical siblings may have more independent lives as they grow up, Robert will be likely to need me and Matthew more and more. One day in the future it will be our sole responsibility to advocate for Robert and make sure he is cared for and protected. It’s sometimes not recognised that siblings are usually the ones who will know their brother/ sister, and have a caring role for them, longer than any other family members.

My brother, Robert, is 14 years old. He has autism, a severe learning Robert disability, challenging behaviours and is non-verbal. He lives at home with my mum, my dad and my other brother, Matthew.

Despite the challenges, Robert’s disabilities and behaviours don’t define him. He’s got a cheeky smile and sense of humour, and can be really affectionate. There are lots of benefits of being his big sister and I always feel proud seeing him do things he enjoys, or watching him attempt to use new skills – even if it’s as little as using cutlery to eat with.

Being the sibling of someone who has a severe learning disability and behaviour that challenges is very different from other sibling relationships. It requires extra responsibility and a lot of forward thinking. We are constantly monitoring risks and trying to reduce the opportunities Robert might have to run off, steal a stranger’s food or cause some sort of destruction! It also requires a lot more patience and understanding – especially when Robert decides to hit, shove or kick you. Sometimes I worry about my parents just as much as I do Robert. I was 12 when Robert was diagnosed and I can remember the impact it had on my mum and dad. However, seeing the great job they do has also given me the

My own experiences influenced why I wanted to do an internship with the CBF, and the charity is starting to make plans about what support we could offer siblings in the future. I’m looking forward to contributing to something so close to my heart, and helping to support other siblings.


If you are the sibling of somebody with severe learning disabilities and would like to contribute towards the development of the CBF’s forthcoming support for siblings, please email support@thecbf.org.uk for information about potential opportunities to get involved.

Challenge 2016 Summer 5


Trauma Support In February this year, a high-profile court case began, investigating a number of allegations against staff at two residential care homes belonging to Devon-based Atlas Project Ltd. The charges included the alleged false imprisonment of several people with learning disabilities. Due to the legal proceedings being ongoing, the CBF is unable to comment on the case at this time. But as soon as the trial was first reported in the media we compiled a document with information about where to go for support, as we knew that some families would be concerned. The document can be accessed online here: www.bitly.com/where-to-go-for-support Sadly, children and adults with learning disabilities who display challenging behaviour are at risk of being intentionally or unintentionally abused by people who support them. In addition, witnessing the abuse of someone else, such as a sibling or another resident in a care home, can also be traumatic. It is important for someone who has experienced trauma to get appropriate support to help them move on and feel safe. This does not need to be specifically named trauma support and can be provided by the local Community Learning Disability Team. Support may include arranging one or more of the following therapies: • • • • •

Psychological therapy, which can be adapted for people with limited or no verbal communication Music, art, or dance therapy Psychodynamic therapy Intensive interaction Play therapy

This information has been taken from the CBF’s latest FAQ, about Trauma Support. For more information, please read the full FAQ on the CBF website. Our Family Support Team has also recently completed a new FAQ on accessing Legal Support, a summary of which can be read on the next page. To read both FAQs in full, please visit the CBF website: www.challengingbehaviour.org.uk

A Professional Perspective with PTSD are often prescribed drugs, even though there’s little evidence that drugs are effective. Drugs don’t address the underlying causes of PTSD, whereas ‘talking therapies’ do. Of the talking therapies, Trauma-Focused Cognitive Behaviour Therapy (TF-CBT) seems to be the most effective for PTSD in the general population. Standard TF-CBT procedures aren’t always suitable for people with learning disabilities, although increasingly we know how to adapt such procedures to make them more accessible. Cliff Hawkins

Biza Kroese

We asked Biza Stenfert Kroese (Senior Lecturer and Consultant Clinical Psychologist, University of Birmingham) and Cliff Hawkins (Consultant Clinical Psychologist, Black Country Partnership Foundation NHS Trust) for their insights into how to help people with learning disabilities cope with trauma… People with learning disabilities are more likely than other people to be abused, due to being dependent on staff and having difficulties in recognising and reporting abuse. Between 70-90% of people with learning disabilities have experienced some form of abuse. People exposed to traumatic events (particularly when this involves abuse) often suffer Post-Traumatic Stress Disorder (PTSD) symptoms such as anxiety, flashbacks and recurring nightmares. They can also have difficulties with regulating their emotions, sustaining relationships and feeling close to others. They frequently suffer feelings of shame and guilt and may develop behaviours described as challenging.

TF-CBT aims to help people to improve their personal safety, self-care and ability to regulate their emotions. We offer people a 12-week programme that includes sessions on: staying safe; understanding the effects of trauma on our minds and bodies; understanding and managing emotions; relationships with others; coping with triggers/memories/flashbacks; thinking about the way we think. To make the sessions accessible to our clients we try to keep “talking at them” to a minimum and instead include lots of artwork, role play, quizzes, and mindfulness and relaxation exercises. Our clients have told us that although some difficult issues were discussed, they felt safe and supported, enjoyed the activities, and they particularly appreciated the contact with other group members. So, if you know someone with a learning disability who you think may be experiencing PTSD, please contact your local NHS Community Team for Children or Adults with Learning Disabilities (CTLD) and ask for a Clinical Psychologist. If you don’t know your local CTLD, your GP or Social Worker will know. Also, you can ring the CBF’s Family Support Team for advice.

People with learning disabilities who experience psychological distress and behaviours described as challenging associated 6 Challenge Summer 2016



Family Perspectives We often feature stories in Challenge about difficult experiences that families have gone through. As part of this section of the newsletter about overcoming negative experiences, we decided to ask the families of Colleen, and James – both of whose stories have featured in Challenge before – for an update on how they are now, and what has helped them to make positive progress... June 2016 marks Colleen celebrating 9 years of living her 'own' life, on her terms. For this to happen, correct, appropriate support systems and funding needed to be in place, and reviewed on a regular basis. This is a consequence of the 'core' people (family, professionals, friends, advocates) working with and on behalf of Colleen, always with her best interests at the centre of everything. Prior to 2007, Colleen's experiences were very different: anxiety, failure, disappointment, anger, feeling invisible, and having no hope. Today, Colleen experiences the balance of being happy, feeling safe and comfortable, and enjoying her life. But she also still encounters and attracts negative opinion, barriers, and challenges to who she is, how she lives her life, and how this is supported.


The past 9 years highlight that positive change can happen. With a correct and honest approach Colleen’s confidence has gently blossomed and she is able to deal better with the negative elements that still happen in her life. This has partly been achieved through Colleen's involvement with ‘Leading Players', who are an inspirational user-led drama group for adults with learning disabilities. Colleen enjoys this part of her life, has made quality friendships, and is proud of the acting roles she undertakes, exploring disability and negative issues using drama. Colleen continues to be an inspiration to all who truly know her. Felicity, Colleen, and Fiona

Our son, James, spent twenty years in inappropriate services which were increasingly damaging. He ended up brutalised and traumatised by the totality of his experiences. We engaged with commissioners to set up a service that would meet his needs. James cannot speak and suffers from Post-Traumatic Stress Disorder, which makes access to external therapeutic input difficult. In three years, through empathetic, consistent support, progress has been achieved by a committed, trained staff team led by a skilled manager. Complications arising from a difficult transition from an Assessment and Treatment Unit, as well as issues around medication, have meant that James progress has been slow. Thanks to the efforts of his staff team James’ quality of life has improved greatly. He now feels safe, is less anxious, can make choices and is learning to communicate. Providing the right environment means that James is now rarely compelled to present behaviour described as challenging. He is seen as a gentle person and not aggressive by nature. David and Jill Jack Thank you to both families for sharing their relative’s experiences. To find out more about Colleen’s story, you can watch the CBF’s film ‘Everybody Matters’, which is available now on DVD, free to family carers who have a relative with a learning disability. You can order a copy on the CBF website, or by using the resource order form at the end of the newsletter.


Legal FAQ – a summary Taking legal action on behalf of a family member who has a learning disability can feel like a big undertaking and is daunting for many people. These steps to getting legal representation may help get you started. A solicitor can only represent a person if they are instructed to do so. If your family member lacks the mental capacity to instruct the solicitor themselves, then you can act as their ‘litigation friend’ to instruct the solicitor on their behalf. If there is no one suitable to act as litigation friend, the Official Solicitor (a public officer funded by the Government) may act as a litigation friend. Legal firms have varying areas of expertise, so you need to decide which one is the right firm for you. Here are some tips to finding an appropriate solicitor: • Ask the CBF for a list of legal firms that specialise in education, health and social care laws. • Use the Law Society Find a Solicitor service. • Look at the firm’s website and read any examples of the kind of work they do. • Ask what similar cases they have had experience of. • Find out what their approach to the case would be. To help them work out whether they can take on your case, you should: • Try to be clear about what issue you need legal advice about and tell the solicitor the most important things – they can ask for more detailed information later on. • Think about what you are aiming to achieve: to get a decision prevented or overturned; justice for a situation that you believe was unlawful; or to have your concerns taken seriously. This is a shortened version of our brand new Legal FAQ, which can be read in full on our website: www.challengingbehaviour.org.uk

Challenge 2016 Summer 7


Teaching New Skills – information sheet summary For someone with learning disabilities, the ability to learn new skills can be key to getting their needs met, giving them independence, and allowing them to try new things. Techniques for teaching practical skills include: 1. Task Analysis: breaking down a task (e.g. putting on a T-shirt) into smaller chunks, and thinking about which steps someone might need support with. 2. Backwards Chaining: physically supporting every step in the task except the last one, which the person does themselves. When the person can perform the last step of the task on their own, they can be taught to do the last two steps of the sequence without physical support (then the last three, last four etc.) 3. Prompt and Fade: physically supporting someone to perform a task until they become more skilled, at which point reducing (“fading”) the amount of physical support you offer until they are eventually performing the task on their own, whilst you give verbal encouragement (“prompting”). Challenging behaviour can often be a way of communicating an unmet need. The use of signing, symbols and photo systems may help teach a person communication skills – provided you respond to the sign/symbol as quickly as you would have responded to the behaviour. Coping skills are valuable too. Big life changes (e.g. moving house) can be confusing for someone with learning disabilities, but you can try to reduce their anxiety by explaining in advance what will happen (perhaps using pictures) and by using a calendar to count down the days until the change. When teaching someone how to cope with waiting for short periods, sand or water timers (to help the person “see” time passing) and/or digital clocks with alarms and beeps can help the person understand how long they have to wait. For more information about these techniques, read the full resource, ‘Teaching New Skills’, on our website.

8 Challenge Summer 2016



: I wondered if anyone can advise the best way to help explain to my sister that her Mum has sadly passed away. How is this best addressed for the future when she asks for my Mum?

A1: My mother was diagnosed with terminal cancer this time last year and she passed away in April. My non-verbal son aged 16 was very close to her. It has amazed me how well he has coped. I was honest with him from the start about the cancer and the prognosis and took him to hospital/hospice to visit her. I got upset many times and cried as I was talking to him but I feel that it showed him that it was ok to be upset. I talked about how the memory of someone lives on and we have lots of happy memories and photos which we have available to look at. I wanted him to attend her


: Does anyone have any advice they can give me about getting a passport for my son please? He has a severe learning disability, autism and has some challenging behaviour. He does not speak or write.

A1: You can apply for a passport on his behalf. Take a look here: www.gov.uk/passport-services-disabled. My sister has a passport, which my late mother did at the time. Hope this helps. A2: You will have no problem at all. Complete the passport form as you would normally, enclose the documents required. (Don't forget it has to be the full birth certificate with parent’s details). When you get to the section where normally the applicant

funeral and we talked about it, I explained everything that would happen. He did attend and behaved impeccably. So my advice is to be honest and talk to her assuming that she is capable of understanding. A2: Please accept my sincere condolences about your loss and the grief your family will inevitably be experiencing at this time. A Social Story* might help to make communication with your sister easier and more effective. You may also find the following books useful: 1. "When Dad Died” by Sheila Hollins and Lester Sireling; 2. "Sad Book" by Michael Rosen; 3. ”Laura's Star" by Klaus Baumgart; 4. "How can people with autism understand death?" by N. Dalrymple; 5. "Memory Garden" – life cycle of a flower; 6. "Goodbye Mog" by Judith Kerr. It may be difficult for you to find items 4 & 5 above but the items 1-3 and 6 are much more readily available. Take your time... *A Social Story, also known as a visual story, is a way of explaining a process, or a series of events that will happen, using pictures.

would sign, the mom or dad can sign instead, making sure the signature is in the brown box. I think it's section 8 where you give a brief reason to why your son is unable to sign. If sitting in a photo booth is difficult, go to a shop or photographers that take photos from a camera. Sainsbury’s sometimes have them, Timpson’s shoe repairs, Max Spielmann etc. If the photo doesn't comply with instructions (i.e. they’re not looking at camera) explain again in section 8. A3: I have just done a passport for my son who is 18. You can complete the forms for him and sign for him. When you send the photo with it you can get a reasonable picture and add a covering letter to explain why he may not look directly at camera etc. to account for photo not being as they request. My son's school did the letter for me. His passport application was approved and came back directly. It is very useful to have the passport as ID.

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 network@thecbf.org.uk. CHALLENGING BEHAVIOUR FOUNDATION


News A roundup of what’s been happening

7 Days of Action In April, a group of families started a grass-roots awareness-raising campaign about individuals with learning disabilities who are stuck in Assessment and Treatment Units away from their homes. The campaign focused on the stories of seven individuals with learning disabilities who are, or were, inpatients in ATUs. On each day of the week, a new story was released online. Many of the family stories were harrowing, and generated a powerful response on social media. The ‘7 Days of Action’ campaign managed to shine a spotlight on these important issues, by securing coverage in national as well as local media. Well done to all the families involved in the campaign.


Innovative, interesting or useful resources available free online The Cerebra Problem-Solving Toolkit Cerebra has published a brand new toolkit, which aims to support disabled people and carers, as well as their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. The toolkit can be downloaded, free, at the following link: www.w3cerebra.org.uk /practical-help/problem-solvingtoolkit-for-families

You can visit the blog online here, and read the seven family stories: www.theatuscandal.wordpress.com The CBF has a series of joint resources, ‘Meeting the Challenge’, which include information about inpatient care, how to spot poor care and abuse, and how to plan for a successful discharge for your relative from an ATU. The resources can be accessed, free, on the CBF website: www.challengingbehaviour.org.uk/information/all-our-resources.html

‘Life Begins at Home’

The Challenging Behaviour Foundation and Mencap have been working together on a new project about families of children with learning disabilities who live away from home. The project hopes to improve the support offered to families to help them keep in touch with children who are living away from home for a long period. The project was funded by NHS England as part of the Transforming Care Programme.

‘Life Begins at Home’ is a new guide from the Housing and Support Alliance, aiming to help families and front-line housing, health and social professionals understand the housing choices available to them. It is accompanied by a series of videos, and by a training and development pack for professionals. Links to the videos, and links to download the guide and the training pack, both free of charge, can all be found here:www.housingandsupport .org .uk/life-begins-at-home

A blog post about some of the issues in the project was published on the Paving the Way website in early May, and was later followed by a full information resource. You can read both the blog post and the resource on the Paving the Way website: www.pavingtheway.works

‘Improving Short Breaks Services’

Keeping in Touch with Home Project

‘What’s New’ – Paving the Way The Paving the Way website has released a series of new blogs, each promoting new resources and videos that are available, free, on the site! Guest bloggers over recent months have included Heather Armstrong (National Learning Disability Senate), Claire Dorer (National Association of Independent Schools and Non-Maintained Special Schools), Christine Lenehan (Council for Disabled Children), Jen Fookes (a family carer), and Professor Richard Hastings (University of Warwick). More blogs from family carers and professionals are planned, so keep checking back the website to keep up to date with the latest information and resources: www.pavingtheway.works/whats-new

Advocacy Pamphlet for Commissioners The CBF has recently released ‘Commissioning Advocacy Services for Individuals with Severe Learning Disabilities.’ Independent advocacy services are a crucial resource for vulnerable individuals, including those with learning disabilities. This new guide has been produced to help those responsible for learning disability services to plan and increase the availability, and quality, of independent advocacy services for individuals with severe learning disabilities who display behaviour that challenges. For a copy of the pamphlet, please email us at info@thecbf.org.uk, or visit our website: www.challengingbehaviour.org.uk CHALLENGING BEHAVIOUR FOUNDATION

Contact a Family has a range of new resources about short breaks services for families with disabled children, including a series of short factsheets for parents, and a more detailed toolkit containing legal content, best practice, and case studies. Also available is a ‘short breaks services statement review tool’, which provides an overview of the legal framework local authorities must take into account when developing and providing services. All these resources can be downloaded free of charge on the Contact a Family website: www. cafamily.org.uk / what-we-do/parentcarer-participation/improving-shortbreaks-services

Found something interesting online you’d like to share? Email it to communications@thecbf.org.uk, post it to our Facebook page or tweet it to us @CBFdn. Challenge 2016 Summer 9


Fundraising Success As a small national charity we are reliant on the support, generosity, and, at times, sheer stamina of our supporters! This spring we were fortunate to receive some amazing fundraising support…

Charlie Howard, Ian Hall and Dominic Dougall

On 15th April, ‘Team Charlie’ cycled 275km from London to Paris in aid of the CBF. Not only did they cycle through torrential rain, they raised a staggering total of £2,699! Thank you, Team Charlie, for your amazing work!

Just two days later, long-term CBF supporter Dr Nick Gore (Clinical Psychologist and Lecturer in Learning Disability) ran this year’s Brighton Marathon, held on 17th April. Smashing his personal best, Nick finished in 3 hours and 52 minutes!

Nick running the Brighton Marathon

He also raised a whopping £1,076 for the CBF – thank you so much, Nick!

Woodlands Festival This May we held our first fundraising festival in collaboration with the Academy of Woodlands and Look Kloser: Creative & Performing Arts in Gillingham, Kent. This fully-accessible event kicked off with live music from ‘We Ghosts’ and ‘Clea Llewelleyn.’ If you couldn’t make it – you missed an absolute treat! Left: ‘We Ghosts’ – photos courtesy of Neil Thorne Photography Saturday followed with an art market, dance and poetry workshops, with outstanding performances from the Vision Communication Signing Choir, and Sam Rapp the Dyslexic Poet – plus a ‘Lion King’ interpretation and ‘the Big Dance’ both led by Look Kloser. Left: ‘Vision Communication Signing Choir’ – photo courtesy of Charlotte Moore On Saturday evening we had stand-up comedy provided by a medley of comedians, from the London and South East comedy circuit. All five comedians, Matt Hoss, Matt Duwell, Jack Brooks, Ravi Holy and Si Deaves, gave their time freely. We thank them for their generosity. Left: ‘The Lion King’ – photo courtesy of Laura King, Look Kloser

Quiz Nights We continue to hold our popular fundraising quiz nights throughout the year. The events are held at the Millennium Centre, St Margaret’s Church, Rainham in Kent. It is thanks to the support and generosity of our dedicated Quiz Masters, Graham Robertson and Brian Calderwood, that we are able to hold these regular events. Our quiz nights are always well attended by a loyal supporter base providing a stable source of income – thank you to all involved. Teams have their own table, for up to 8 members, a small donation of £5 per entrant is kindly requested. Teams bring their own refreshments. We also hold a raffle on the evening with prizes regularly donated by the KM Charity Treasure Chest and local businesses. We are always on the hunt for new teams, as well as in-kind donations. If you would like to find out how you can get involved please email fundraising@thecbf.org.uk or call 01634 838739. 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 laura.brown@thecbf.org.uk, or 01634 838739.

10 Challenge Summer 2016



Thank you A big thank you to Cally Ward for all her hard work for the CBF this past year! Cally took up the role of Policy Manager whilst Gemma Grant was on maternity leave, having already been a dedicated supporter of the CBF for many years. Thank you, Cally, for everything you have done, and continue to do, for the CBF. A big thank you also to Holly Dawson! Holly also helped to cover Gemma’s maternity leave, by acting as our Volunteer Co-ordinator for seven months. Holly left the CBF in March, and we wish her all the best for the future. We are pleased to say that Gemma will be returning to the CBF in July this year, on a part-time basis.

100 Club winners Recent winners of the CBF 100 club, winning £25 each were: December 2015 Kym McMillan, Rainham, Kent January 2016 J Manley, West Malling, Kent February 2016 A & J Genders, Hertfordshire

Resource order form 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


Total £

CHALLENGING BEHAVIOUR DVD RESOURCES 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. £31.50*

Everybody Matters DVD

An Introduction to Challenging Behaviour: DVD £31.50* £31.50*

Self-Injurious Behaviour: DVD

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 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

March 2016 Anne Martin, Rainham, Kent

Finding the Causes of Challenging Behaviour: Part 2

April 2016 Jackie Cheeseman, London

Positive Behaviour Support Planning: Part 3 Communication and Challenging Behaviour


Health and Challenging Behaviour

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.

Impact of Caring on Families BASIC INFORMATION PACK (consisting of the 6 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:

Teaching New Skills


The use of Medication



The use of Physical Interventions


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.

Specialist Equipment and Safety Adaptations


Planning for the Future


Further Information for Family Carers


Booklist for Professionals


Difficult sexual behaviour amongst men and boys with learning disabilities


© The Challenging Behaviour Foundation. All rights reserved.

Getting a Statement (Wales & Northern Ireland) £1.00* 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



Total £

The CBF – how you can help

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


Ten Top Tips


Did you know…..?

Self-Injurious Behaviour


• 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


8 Ways to Get a House A guide to help families think about the different types of accommodation and how they are funded.

• We do not charge family carers for our services or resources.


A Guide for Advocates (England and Wales) A comprehensive, practical guide for professional advocates; or family carers advocating for their family member.

• To keep costs down much of our work is carried out by volunteers.


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



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.


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


• Regular giving by standing order makes your money go further by keeping down administrative costs. • 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 fundraising@thecbf.org.uk

Organisation Address The Challenging Behaviour Foundation Postcode

Registered charity number 1060714 (England and Wales)

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.

Address: The Old Courthouse, New Road Avenue, Chatham, Kent, ME4 6BE Email: info@thecbf.org.uk Tel. 01634 838739 www.challengingbehaviour.org.uk

The CBF does not endorse or accept responsibility for any goods or services advertised.

The CBF does not endorse or accept responsibility for any goods or services advertised.

Profile for Court House

'Challenge', Summer 2016 - CBF Newsletter  

'Prevention and Positive Steps' is the theme of this edition of 'Challenge', the newsletter of the Challenging Behaviour Foundation (CBF). W...

'Challenge', Summer 2016 - CBF Newsletter  

'Prevention and Positive Steps' is the theme of this edition of 'Challenge', the newsletter of the Challenging Behaviour Foundation (CBF). W...