'Challenge', Spring 2016 - CBF Newsletter

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Challenge Spring 2016


Care Act-ion! PAGE 4/5

Our guide to the Care Act Introduction to the Care Act, a family perspective, and a guide to Personal Budgets


Assessments of Need How to get the best from your Carer’s Assessment

How to challenge a decision The Care Act offers a real opportunity for Local Authorities to provide effective, person-centred support for people. But if a family isn’t satisfied with an assessment or a decision that has been made, what can they do about it? Alex Rook, a public law expert and CBF Trustee Advisor, explains what you need to know about challenging decisions under the Care Act…. The Care Act 2014 sets out the rules that Local Authorities (“LAs”) must follow when assessing a disabled adult or their carer, and when to provide them with care and support. Alex Rook


New resources A review of a new guide to disabled children’s rights, and new resources from the CBF


Advice from family carers Your questions to the email network, and the CBF’s new website ‘Paving the Way’ – a joint project with CDC


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

However, what should you do if you are not happy with a decision made by the LA, or if you are not satisfied with the assessment or care plan you have received? A decision or assessment can be challenged both informally and formally. The following options can be used independently or in conjunction with each other. Step 1. Speak to the social worker setting out clearly why you are unhappy with an LA's decision. It is possible that the decision will be reconsidered. Step 2. Make a formal written complaint to the LA. LAs have a legal obligation to consider your complaint, and they will have a complaints procedure set out on their website. Complaints are usually dealt with by a complaints officer who has no direct connection to social services, although they will still be an employee of the LA. A complaints officer must consider appropriately your grounds for complaint. The response will be provided in writing. Step 3. If you are still unhappy with a Local Authority's response to your complaint, you can make a further written complaint to The Local

Government Ombudsman (LGO). The LGO is a government body that is set up to review decisions made by LAs. The Ombudsman has legal powers to recommend that an LA should review and change its decision. Making a complaint to the LGO is free to do. Step 4. The lawfulness of an LA's decision can be challenged in court. This process is called Judicial Review. It is important that you take legal advice from a lawyer who specialises in such cases as they can be complex. It is also important that you take such legal advice as soon as possible, even if you are making a complaint to an LA or to the Ombudsman. Act promptly, and in any event in no more than 3 months, because there is a short deadline to issue a claim at court. Most lawyers will provide some free initial advice and Legal Aid may be available to bring such a case, if you are financially eligible. Further information about the Care Act 2014, including template letters and factsheets to help you challenge decisions can be found online at: www.bitly.com/careact-factsheets Alex Rook



Your Comments

Could, should, must or might?

We asked the following questions on Facebook:

legislation that attempt to streamline many previous laws. Within these there are real opportunities to work differently, to be joined up and “seamless.” These Acts provide the background framework to deliver support and services to disabled children and adults, and their families.

‘This Spring will mark the 1 year anniversary of the Care Act. What have you seen it deliver in your local area? What do you think it should be delivering?’ Here were some of the responses that we got… “I have done a lot of training with regard to the Care Act. For me personally I have had no support whatsoever. […] I know for a fact there are a lot of disabled families who cannot get appropriate housing. The Care Act should be covering this as these families are in severe crisis. The information is just not getting out to carers. Young carers going through transition are not being targeted. They are mainly all hidden and forgotten […] I would like to know just how many carer’s assessments have been done and managed with a personal budget.” (Marie)

“I would like to see day care settings regulated as rigorously as residential settings. Also that families are integral to the support plans, part of them, and not treated as outcasts.” (Jules)

“Unfortunately I think we will see its 5th anniversary before social care professionals in our locality even realise that the Care Act has implications for their practice and approaches.” (Sarah)

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

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Vivien Cooper

When Daniel was little he had to go into hospital for a minor operation. It was a complete nightmare. He couldn’t sit still, he rushed about all over the place, and was uncooperative. Staff soon asked me to take him home, rather than staying the night as they had planned. A nurse said to me, ‘He’s a real handful isn’t he? You must get lots of support with him at home.’ Of course, the answer was no. Daniel went to school, and very occasionally went to respite, but when he was at home we were just left to get on with things as best we could. Most people assume, as I previously did, that “the system” swings into action to provide coordinated support, and that there is a planned approach to deliver the right support at the right time, in the right place. I quickly became aware that this was not the case – far from it. The “system” is made up of laws, policy and guidance interpreted in various ways and often delivered from a crisis management approach. There are things that could be done (innovative ways of working), things that should be done (things that we know work), things that must be done (because the law says so), and things that might be done (it’s optional). This issue of Challenge focuses on the Care Act and the Children and Families Act – two major pieces of recent

But it won’t “just happen.” This major shift in working will need to be managed and resourced – and families will need good information about what it means for them and their relative. Against a background of cuts, the temptation is to focus only on the “must dos.” But looking at the “could, should and might dos” may be a much more sensible, cost-effective approach that will ultimately deliver better outcomes. Law and policy provide the framework – but it is the delivery and implementation of it that is key. As the Transforming Care work for children and adults with learning disabilities whose behaviour is described as challenging moves into the delivery of the Hospital closure plan, there is an opportunity to join all of this up – along with other policy initiatives such as the Integrated Personalised Commissioning pilots. But many families have little interest in policy, pilots and plans. What is important is practice. Words on paper are important, but it is translating them into action that makes a real difference to people’s lives – and that is the challenge. These laws and policies could be a real opportunity to get things right across children and adults’ support and services. They should enable education, health and social care to work more closely together around individuals and their families. They must ensure that families get the timely support they need. And then they might make a real difference to people’s lives.

Vivien Cooper OBE Chief Executive and Founder of the Challenging Behaviour Foundation




Jack’s Story

We All Should Care About the Care Act Next month will mark the 1 year anniversary of the Care Act, which first launched in April 2015. By October last year, Local Authorities across the country were supposed to have become “Care Act compliant.” One year on, we’ve decided it’s time to take another look at the Act, and work out what it should be delivering for the families we support. This newsletter aims to provide you with an introduction to the Act. Some articles will explain the challenges that it presents for Local Authorities and professionals. Others will aim to give families important information about their rights, and what they are entitled to under the new rules. Our lead story is by Alex Rook, a public law expert. His article focuses on families having the right to challenge, and gives practical information about how you can do this. On page 4, the CBF’s Policy Manager, Cally Ward, gives an overview of the Care Act, providing information about what families are entitled to receive, and what Local Authorities are meant to provide. On page 5, we have the perspective of a family carer on the Act, and a short guide to Personal Budgets. On pages 6 and 7, our focus moves on to a broader range of topics. These include carer’s assessments, and the rights of disabled children. We also have a guide to the latest set of FAQs, information sheets and video resources produced by the CBF. On pages 8 and 9, we have a selection of latest news and questions and answers from the email network. We also have an article about the CBF’s exciting new website, ‘Paving the Way’, which is the result of a joint project with the Council for Disabled Children. This new website aims to promote early intervention and good practice. We hope you find the content of this newsletter informative. 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 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:


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


Jack* is 8 years old and has autism, as well as complex learning and communication disabilities. In the last year, Jack has started to display aggressive behaviours and self-injuring behaviours. Before contacting the CBF, Jack’s mum, Sarah*, and the rest of the family were unsure how to react. Jack’s challenging behaviour was becoming so frequent that it was leading to his family becoming more irritable, which in turn increased Jack’s irritability, and led to a cycle of challenging behaviour. The family were becoming increasingly worried about his behaviour as well as the impact it was having on Jack’s 10-year-old brother. Family friends suggested to Sarah that she contact the CBF. Sarah did this and a Family Support Worker was able to suggest trying a consistent approach in response to Jack’s challenging behaviours. This included lowering his hands, reassurance, and saying in a firm voice ‘kind hands’. Sarah says this was particularly helpful as it was something everyone in the family could consistently use and has resulted in Jack’s challenging behaviour reducing. What’s more, Sarah believes Jack feels more reassured knowing what the reaction will be when he displays aggression or self-injury. Jack’s family knew they needed more professional help with Jack’s behaviour. The Family Support Worker suggested the family get in touch with the Child and Adolescent Mental Health Service and ask for a referral to an Occupational Therapist. The Occupational Therapist, in combination with a Speech and Language Therapist, has since suggested Jack’s behaviour may relate to sensory processing difficulties. As a result of contact with the CBF Sarah has also been approved two nights a month of respite. She feels this will have a beneficial impact on family life and especially allow her to spend more time with her other son. Sarah also hopes that the short break provision will give Jack more independence. *Names have been changed Challenge 2016 Spring 3


The Care Act 2014: An Introduction The Care Act emphasises person-centred care and individualised support, and the need to understand the person by focusing on what matters to them, not just fitting them into pre-existing services. The person is viewed as part of a family and wider community – and family and friends are recognised as full and equal partners in planning.

Cally Ward, CBF Policy Manager

For the first time in legislation the Care Act recognises that (family) carers have ‘parity of esteem’ with the person they support, which means equal value of their needs. The LA has a duty to assess a carer’s needs, where it appears they might have needs in their own right. At the heart of the Care Act 2014 is this process for assessing needs, determining whether the person (or the carers’) needs are eligible needs and, if they are, developing a Care and Support plan to meet them. Although the eligibility is slightly different for adults and carers the process is similar.

Whether you are a family carer or a professional working in the field of health and social care, it is important that you understand the Care Act 2014. This article offers a brief introduction to the Act. If you have any queries in relation to a specific situation it is always advisable to seek professional legal advice.

The objective of the assessment is to get a full picture of the person (or the carer) and how needs or caring responsibilities impact on their day-to-day wellbeing. Assessments must always be person-centred. The LA has a duty to assess needs in relation to a person’s (or carer’s) wellbeing as described above, and the assessor should be ‘appropriately trained’.

The Care Act is an important piece of legislation because it spells out what Local Authorities (LAs) have to do to meet the needs of adults (people over the age of 18) and the family carers who support them. This article will concentrate primarily on wellbeing, the processes of assessment, and getting care and support under the Act.

The Care Act has established a national eligibility around whether the person is not able to achieve at least two ‘Specified Outcomes’ without assistance and this has a significant impact on their wellbeing. The specified outcomes for adults in the Care Act (there are different ones for carers) include being able to manage and maintain nutrition, personal hygiene, toilet needs, and being appropriately clothed. They also include being able to: maintain a habitable and safe home environment; develop and maintain family or other personal relationships; access and engage in work, training, education or volunteering; make use of necessary facilities or services in the local community including public transport, and recreational facilities or services.

Wellbeing is defined in the Act as including the following: • Personal dignity (including treating the person with respect); • Physical and mental health, and emotional wellbeing; • Protection from abuse and neglect; • Control over day-to-day life (including over care and support and the way it is provided); • Participation in work, education, training or recreation; • Social and economic wellbeing; • Domestic, family and personal relationships; • Suitability of living accommodation; • The person’s contribution to society. The ‘vision’ of the Act is to actively promote wellbeing and independence, and not just wait to respond when people reach a crisis point. The Act gives a new duty to LAs to prevent, reduce and delay the need for care and support and crisis intervention. There are many ways that the LA can promote wellbeing: through their duty to provide good quality information; by developing a joined-up approach between health and social care in the community; and by ensuring that there are a range of support providers with the skills and capacity to meet the needs of people with learning disabilities whose behaviour is described as challenging, and to support their families.

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It is important that the Care and Support Plan accurately reflects the person’s (or carer’s) needs, as well as their preferences and choices about how to meet these needs. The plan should also specify in a very concrete way what has to be done to meet them, and how, when, and by whom the support will be delivered. The Care and Support Plan must be regularly monitored and reviewed to ensure it continues to meet the person’s needs. A new duty in the Care Act is to include a Personal Budget in the Care and Support Plan. The Personal Budget can be taken as a Direct Payment but it does not have to be. There are a number of different ways that support can be provided directly or through the use of a contract with provider/s. What is important is that people and carers have a choice, and control over the best way for them to get the care and support they need. For a list of further resources on the Care Act, please see the version of this article on the CBF website.



My hopes for the Care Act Behaviour Foundation recently, where we discussed what the Care Act means for the work of the CBF. All that complex legal language was made more easily understandable, and it focused on people like Alex – the people whom the CBF supports. Alex is still in education and has an Education Health and Care Plan which was produced under another new piece of legislation: The Children and Families Act 2014. The two acts interlink, with an extensive section on transition for young people. I have yet to meet any families who had a good experience of transition for their young person.

Alex and Debbie A Family Perspective When the long-awaited Care Act was published, it was the biggest shake-up of health and social care legalisation in a generation. I thought: ‘Here we go – some more legal stuff to get my head around.’ But it did also give me some hope for a better life for my son. My son, Alex, is 22 years old, has severe learning disabilities, autism and behaviour that challenges. We had recently been through the gruelling process of transition from children’s services to adult services. This was far from easy, with cuts made to the services and support that Alex, and we as carers, had previously received. Could a little glimmer of hope have arrived? Might the Care Act change and improve Alex’s support and care? What would this mean for our family? The Care Act is a huge piece of legislation which changes the law that preceded it. A mammoth document of hundreds of pages – where to start? I was fortunate enough to be involved in a Care Act “Action Planning Day” at the Challenging

What makes both these acts different is that the disabled person’s wellbeing is at the heart of it all. It also now gives carers the legal right to a Carer’s Assessment and to have their own needs met and delivered through a support plan. Previously, Carer’s Assessments could be offered, but in reality they didn't always happen. I was never offered one. So, in practice, nearly one year on, are carers being recognised and supported in their own right? I have yet to see a carer’s support plan. Local Authorities need to make sure that their social workers/care managers are trained adequately in the Care Act, and that they are able to adapt to this new philosophy when they undertake assessments and arrange subsequent support. With a fragile social care system, and more and more cuts to the budget, how can the personalisation of care and support which runs through the Act be achieved? I believe the Care Act’s aims of improving care, creating positive outcomes and giving people control over their own lives are long-overdue and achievable. But in reality, will any of them happen? It’s early days yet! Debbie Altieri, Family Carer

Personal Budgets The CBF will shortly publish an updated version of the Planning for the Future Information Pack (England), which contains information about support options and rights for adults with severe learning disabilities. Here is a preview of some of its content… Since the Care Act 2014 came into force, the Local Authority must give everyone who has eligible needs a Personal Budget. The LA will tell you how much they think you are entitled to (this is known as an indicative budget) before you look at the Care and Support plan being created. The final allocation of the Personal Budget will be decided through the planning process and when the plan is ‘signed off’ by the LA. Everyone involved should have transparent information about how the Personal Budget is calculated and how much money is in it. The money must be able to meet all of the individual’s eligible needs. You should also have a choice about how this Personal Budget is managed. There are several options: • The money can be managed by the LA who will purchase and organise the care and support, in line with the individual’s needs and wishes. • If available locally, a third party known as an Individual Service Fund (ISF) can also be chosen to manage the Personal Budget. This is where a provider can offer a service to meet needs of the person within the resources of the Personal Budget. • Alternatively, it can be managed directly by the individual or by someone on their behalf, like a family member, if the person does not have the capacity to manage their care package. • In addition, it can be decided that the personal budget is a “mixed package”: a combination of any of the three – whatever works best for the person to get their needs met! This updated resource will be available to order on our website soon. CHALLENGING BEHAVIOUR FOUNDATION

Challenge 2016 Spring 5


Getting the best from your Carer’s Assessment One of the biggest challenges to getting a good quality Carer’s Assessment is that so much is ultimately dependent on the skill of the worker doing the assessment. The Challenging Behaviour Foundation spoke to Dalia Magrill, Coordinator of the Sharing Caring Project (Sheffield Mencap), about how to get the best from your Carer’s Assessment, knowing your rights, and what the point of having an assessment is in the first place. Here’s what we learned from Dalia… The key to filling in a good assessment is to come very prepared – not just to tick boxes with ‘yes’ and ‘no’ responses. It is essential to mentally prepare for the assessment, in order to get the best out of it. It can be very hard to think fully about how caring actually impacts on your life, which is why it is so important to think through your answers in advance. You also need to have some awareness about what is and what is not possible in terms of an outcome of the assessment. There are four potential outcomes from doing a Carer’s Assessment, and sometimes the overall end result will be a combination of the four. 1. A good assessment can lead to better outcomes for the person you care for, as well as a positive effect on the family carer. When a social worker is doing an assessment it can help them develop a better package if they take into account the impact that caring has on you as the carer. For example, you could explain that you are not sleeping adequately or perhaps that you feel isolated. You might inform the assessor that your relative isn’t being offered activities during the week and this is impacting on your ability to work. In short, a fully-rounded assessment should take into account the impact that caring has on the whole family, not just the person who is receiving the care.

2. A good assessment can lead to signposting to information about support services in your area that you were not previously aware of. For example, if you lived in Sheffield you might be signposted to the free 3 hour sitting service that exists there.

3. A good assessment can lead to a small package of care for the carer in their own right. For example, if you have to support the person during the day, or they are also up at night, you might have little time or energy to undertake practical chores like ironing, cleaning, or gardening. A small package of care supporting you with these tasks might be an outcome of an assessment.

4. A good assessment can lead to greater recognition of the important role you play as a carer. It can make you and the professionals more aware of the way caring is impacting on you and the need for better communication between the family and the services used. It may even highlight the need for advocacy support. In short, the key message is to be prepared for your assessment. Think about the everyday help you give your relative with a learning disability. Do they need help with getting in and out of bed, washing, dressing, toileting, cleaning the house, shopping, cooking, doing their laundry, dealing with money, filling in forms, getting to places, staying safe, keeping healthy, dealing with their feelings, communicating, or getting their voice heard? Remember too that what counts as ‘supporting’ the person is not limited to the physical things you do, but can include prompting and reminding them to do things. It is easy to underestimate just how much support you provide every day. But you must also think about your own needs and how the caring you provide impacts on your health, wellbeing and your opportunities to live your own life. Give some thought before the assessment about what might help! Would you benefit from a break and/or some practical assistance? You should also consider how long you think you can go on providing the level of support that you do, and whether it is sustainable in the future. Thank you to Dalia Magrill for speaking to us about this topic. For more information about Carer’s Assessments, and in particular the right to be assessed for short breaks, you can read the CBF’s new FAQ on ‘Short breaks.’ Read more about all our new FAQs and other information resources on page 7 of the newsletter! Photo credit: Keith Wyncoll 6 Challenge Spring 2016



The Rights of Disabled Children Our Family Support Manager, Holly Butcher, reviews a recent publication from the Legal Action Group (LAG) and the Council for Disabled Children (CDC). • The strength of carers’ including young carers.


Also useful is a section of the handbook that explains the variety of duties on Local Authorities to provide services to disabled children, and the forms those services can come in. This is linked with short breaks provision, care planning and Personal Budgets.

Disabled Children: A Legal Handbook The second edition of Disabled Children: A Legal Handbook will be helpful for families, professionals, support organisations and advocates, as well as legal practitioners. It is empowering for everyone involved in disabled children’s lives to know that there are certain duties that authorities must follow, and other actions they can undertake if they are able and willing. The handbook begins by covering the principles of disabled children’s rights and provides a well-evidenced description of the difficulties faced by disabled children and their families in the UK. The book then explains disabled children’s rights by topic: legal fundamentals, children’s services, education, health, housing, decisionmaking, carers, equality and non-discrimination, and transition to adulthood. A practical chapter on remedies explains what can be achieved using the statutory complaints procedures, ombudsmen, tribunals, legal action and other resolution methods. Learning what grounds can be cited for a judicial review of a Local Authority decision is helpful for thinking about when to seek legal advice. This knowledge also helps with our expectations about what is possible using the law. Rights that stand out in this handbook are: • Rights to protection from school exclusion

Areas that readers may have less knowledge about are rights to healthcare services, housing, and the range of rights the Equality Act provides to protect against discrimination. Valuable nuggets of knowledge include: • The Local Authority has a duty to provide sufficient childcare for parents in the area who are in work or education (under the Childcare Act 2006). • NHS bodies have a duty to ensure that as users of services, disabled children are represented and involved in any planning or changes to their health services (under NHS Act 2006 and via Health and Wellbeing Boards). The handbook provides helpful distinctions such as the difference between illegality, irrationality and procedural impropriety (whether an authority is breaching the law, acting unreasonably, or biased). We can all be more confident in using the law when we understand key legal terms. This handbook is co-written by legal practitioners with a range of experience. The language used is technical where needed and, although the concepts are often complex, the authors explain the law in everyday language. There is a huge amount of information in this handbook that can help make family carers’ and advocates’ approaches to using the law more effective – asserting their disabled child’s rights and their rights as carers, as well as knowing when to seek legal advice. A digital version of the handbook is available, free, on the CDC’s website: www.bitly.com/2nd-legal-handbook

• The support and services that should be provided in the transition to adulthood CHALLENGING BEHAVIOUR FOUNDATION

New Resources from the CBF The CBF’s Family Support Team has been hard at work, creating a whole range of new information resources! More are currently in the pipe-line, but here is a guide to the new resources that have recently been released: The CBF has written five new “FAQs” and published them on our website. These “FAQs” give detailed answers to some frequently asked questions on a variety of topics. The five topics are: 1. Short breaks 2. Running off 3. Safeguarding children 4. Safeguarding adults 5. Dental care Some of the FAQs, such as the ‘Short breaks’ FAQ, give information about your rights as a carer, and practical advice about how to get the changes to your provision that you may need. Others focus on the person with learning disabilities, for example the FAQ on ‘Running off.’ This FAQ gives advice about ways to reduce this particular challenging behaviour, and also ways to try to keep your loved one safe. In addition to all of this, we have also created a brand new Information Sheet, called ‘Teaching New Skills.’ This information sheet explains ways in which you can try to help your relative with learning disabilities learn new basic skills (e.g. getting dressed) to further their independence and development. Further to these written information resources, we have also recently created three new video clips. Each clip features a professional and a family carer, discussing the following topics: 1) Health and Challenging Behaviour 2) Accessing Healthcare 3) Working in Partnership All these clips, along with the information resources, can be accessed, free, on the CBF website!

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‘Paving the Way’ – a new website The CBF, together with the Council for Disabled Children (CDC), has launched a new website called ‘Paving the Way!’ ‘Paving the Way’ is our new name for the Early Intervention Project, which is now in its third year. The project has centred on helping families who are raising children with learning disabilities and behaviour described as challenging to get the right information and support early on. The Paving the Way website aims to collect together the information and resources that the project has generated in one easy-to-navigate site. The website aims to provide families with the information they need, and also to raise awareness of the fact that evidence-based early intervention, delivered locally, has the potential to reduce challenging behaviour and to improve wellbeing. One section of the new website, titled ‘Learning From Families’, is dedicated to family stories. This section gives real life examples of what has been helpful for families of children with severe learning disabilities and behaviour that challenges. The website is also intended to inspire professionals and commissioners to develop good services, and has a section giving examples of good practice, as well as a section of useful resources. The site also features a blog, which we will be updating regularly with new project information or related developments, as well as with contributions from guest bloggers. You can visit the new website, and leave feedback, at: www.pavingtheway.works



: What are people’s experiences of joint health and social care funding? Does it make it more difficult for raising issues if you have 2 commissioners?

A1: Our son has had joint funding for 2 years and we have not had any problems. The Local Authority still takes the lead role and it works well.


: Has anyone any ideas at all what I can do when my son is at his monthly weekend respite? I have done thinking of him, staring into space, shopping, rambling, galleries, staring into space, etc.

A1: I experienced the same thing as far as socialising goes. I am older than you and have very few friends because of the isolation which happens when you are constantly looking after someone. My thing is dancing. Ever tried Ceroc? Even if you haven't danced a step in your life you can go on your own and there are lots of people to dance with while you learn. It is like jive only easier with beginners’ lessons every night and no one is left standing on their own. A2: Have a Carer’s Assessment and see if you can get some funding to do a weekend activity break – nice country B&B with a group learning stained glass or plant identification – you can find just about anything. A3:Over the years I came to do the things which I enjoyed but helped me with my caring role. For example, my

He gets one to one support at all times and due to his challenging behaviour it is appropriate that some of his support should come from health. A2: Most areas have a Parent Carers Forum funded by the Social Services Department. They should have an idea of how their department operates. A3: There seems to be no reliable advice from anyone and no advocacy either. It seems that each area perhaps does things according to their own culture.

daughter loves going swimming, so I decided to join a beginners’ swimming group. My daughter loves cycling, but I always found I had to have the wheelchair cycle because I didn't know how to ride a bike. So my husband used to fly by while I struggled with pulling my daughter's weight and cycle at the same time (like a tricycle). This made me want to learn to cycle, so I joined a cycling club and now my husband and I share the responsibility of cycling around. A4: I would suggest looking for local support groups on the Contact a Family website. A5: I found that I had become isolated after years of bringing up my foster daughter, but this year I discovered meet-up groups on the internet – www.meetup.com. They have all sorts of groups in all areas. I have joined a daytime meet-up group and suddenly have a social life again. I would definitely recommend giving it a try. A6: Much would depend on where you are, what is available locally and your interests? Any arts centre where you can try a craft activity? Try talking to the Council for Voluntary Service/Volunteer Centre for ideas to match your interest?

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.

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News A roundup of what’s been happening

Publication of the Mazars report The long-awaited Mazars report was finally published last December. The report examined all deaths of people receiving care from Mental Health and Learning Disability services at Southern Health NHS Trust between April 2011 and March 2015. The report showed that the likelihood of a person with a learning disability’s unexpected death being investigated was just 1%. What’s more, even when investigations into unexpected deaths were carried out they were of a poor quality. 64% of investigations into unexpected deaths did not involve the family, and there was confusion in Southern Health about who should provide support to families.

Innovative, interesting or useful resources available free online Get Your Rights The Council for Disabled Children (CDC) and the National Children’s Bureau (NCB) have co-launched a new website, called ‘Get Your Rights.’ The site uses text and video clips to explain the rights that children have when making choices about their healthcare. www.getyourrights.org

The full report can be accessed online here: www.bitly.com/mazars-report The easy-to-read version can be read here: www.bitly.com/mazars-easy-read

CBF Statement on restrictive physical interventions with children In January, the CBF published a statement on the use of restrictive physical interventions on children. The statement was signed by Mencap, the Council for Disabled Children (CDC), the Tizard Centre, and the Children’s Commissioner for England. Whilst guidance about the use of restrictive physical interventions with adults exists, there is currently no equivalent guidance for children. The Department of Health has commissioned CDC to produce some equivalent guidance for children, but the CBF’s statement aims to clarify the current position in the meantime. The statement can be read on our website here: www.bitly.com/restrictive-statement

Sir Stephen Bubb’s report: Time for Change: the Challenge Ahead On 22nd February, the third and final report from Sir Stephen Bubb was released. This follows two previous reports from Stephen Bubb, ‘Winterbourne View – Time to Change’ (November 2014), and ‘Winterbourne View – Time is Running Out’ (July 2015). Both reports detailed the urgent need for change, and the concerning lack of progress on the ground, despite the government’s stated commitment to closing down ATUs. This final report outlines the progress made and the challenges still faced. You can access the full report on the ACEVO website: www.bitly.com/3rd-bubb-report In Memory Our thoughts are with the families and friends of William Asquith, from Putney, and Luke Hosking, from Hampshire, who have sadly passed away. Thank you to those who have recently given donations in memory of William and Luke.

William Asquith

Luke Hosking

We are also sad to announce the recent death of Stuart Corner, who supported the CBF for many years. We offer our condolences to his family at this time, and our thanks for their support of the CBF in his memory. CHALLENGING BEHAVIOUR FOUNDATION

Family Life Plus The 'Family Life Plus' is an online tool from One Plus One. It is a support site aimed at new parents raising a child with a disability. The website focuses on keeping relationships healthy, through practical tips and suggestions. www.relationshipstool.cafamily.org.u k/menu

Easy Read Health Guides The Foundation for People with Learning Disabilities has published a series of Easy Read Guides to various health conditions online. The guides are written in simple, easy-to-understand language using clear visual aids. The medical conditions listed include ADHD, epilepsy, obesity, dental complaints, and other illnesses and conditions. www.bitly.com/easyreadhealth-guides

Nottinghamshire Help Yourself Videos Nottinghamshire Help Yourself has a number of videos on its website, giving information about various aspects of social care. Some of the videos have a particular focus on Nottinghamshire, but many give information that will be useful to families who live elsewhere. Two videos which might especially be worth watching are ‘What is Wellbeing?’ (in which a range of individuals give their personal definitions of ‘wellbeing’) and ‘Outcome and Support Planning’ (an animation giving a clear outline of what a support plan is, and what it should do). The full list of videos is available here: www.bitly.com/nott-videos 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 Spring 9


Fundraising Art Auction A big thank you to everyone involved with our fundraising art exhibition and auction, held last November. The event was a huge success with over 50 pieces of art submitted. Many local and national artists were generous enough to donate paintings, illustrations and sculpture – including Saatchi exhibitor and Medway-based artist, Darrell Hawkins. The month-long event was well received by the local community, with an attendance of well over 100 people at the private view, including the Deputy Mayor and Mayoress. The film screening, quiz night and auction were all incredibly busy, raising a total of over £2,200! A massive thank you to every artist and individual who gave up their time to help make this event so successful. We also thank the Rochester Film Society, Spicer and Moore Productions, Look Kloser: Creative and Performing Arts, WoW Kent and Amethyst Framing. Special thanks go to Sun Pier House, who generously donated the use of their gallery/tearoom for the entire month. Without their support this event could not have taken place.

The First CBF Arts Festival NEW for 2016! Following the success of our fundraising art exhibition and auction held at the end of last year, we are excited to announce our first fundraising Arts Festival. In collaboration with the Academy of Woodlands, Gillingham, and Look Kloser: Creative and Performing Arts we are organising an exciting weekend, packed full of performing and visual arts. The weekend will kick off with live music on Friday 20th May at the Academy of Woodlands, followed by an art market and an inspiring workshop and demonstration programme of visual and performing arts throughout the weekend. There will be stand-up comedy, dance, relaxation, a film screening and much, much more. This Arts Festival is OPEN TO ALL – and one not to be missed! For further information please email laura.brown@thecbf.org.uk

Would you like to help us fundraise? Don’t worry; you don’t need to run a marathon…although you can if you want to… How about holding a summer barbecue for your friends and family? This could be a great opportunity to catch up with those you haven’t seen for a while and raise some much needed funds for the CBF. All you need to do is set a date, invite some friends/family – tell them it’s a fundraising BBQ and ask that they make a small contribution, perhaps with a suggested donation of £5/£10. You could even approach your local supermarket/independent stores and ask them if they would contribute – you might be surprised at their generosity. Donations of burgers, sausages, paper-plates and even raffle prizes that you can raffle on the day all add up. You could set up a Tombola, Pluck-the-Duck or put one of your neighbours in the stocks! It really could be a great day for everyone involved. We love organising stuff like this here at the CBF, so if you need a hand do get in touch – we’d be incredibly happy to help out. Thank you 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 Spring 2016



Thank you A big thank you to Audrey Giles, who was our Experts by Experience Project Manager. Audrey worked on the project, which recruited, trained and supported family carers to be part of the Care Quality Commission Expert by Experience programme, from the very beginning in 2011. CBF’s involvement in the CQC Experts by Experience programme came to an end in January this year. Thanks also to Jayne, Jessica, Sandy, and all the other staff who have been involved in the project over the years.

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

100 Club winners Recent winners of the CBF 100 club, winning £25 each were: September 2015 Gary Morris Bristol October 2015 Chris Parsons Canterbury, Kent November 2015 (£50 winner) Tracey Bigham, Cranbrook, Kent

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 Above all, a huge thank you to our incredible Experts by Experience for all their hard work. We wish them all the best in the future.


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 Finding the Causes of Challenging Behaviour: Part 2 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.

Disclaimer 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 Challenging Behaviour Foundation. All rights reserved.

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


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


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.

Did you know that the CBF’s Newsletter, Challenge, also goes out by email? E-Challenge is an electronic version of the newsletter you have just received – plus additional news and information that we couldn’t quite fit in the printed edition! You can sign up to e-Challenge on our website: www.challengingbehaviour.org.uk If you would like to stop receiving the printed newsletter please email us at: communications@thecbf.org.uk By signing up to e-Challenge instead of the printed newsletter, you can receive all the same free information, while helping us to reduce our printing and postage costs, and support more families. Thank you.