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KEEPING IN TOUCHWITH HOME:HOW TO HELP CHILDREN AND YOUNGPEOPLE WITH LEARNING DISABILITIESAND THEIR FAMILIES KEEP IN TOUCHWHEN THEY ARE LIVING AWAY FROM HOME

2KEEPING IN TOUCH WITH HOME

CONTENTSINTRODUCTION 4SECTION ONE: WHAT WORKS? LEARNING FROM FAMILIES6Families’ vision of good keeping in touch arrangements6Summary of key messages from family-carers7Stop and think! (key questions for settings and commissioners)14SECTION TWO: WHAT WORKS? LEARNING FROM LOCAL PRACTICE15Case studies from 3 local settings 15Good practice checklist for settings 21Good practice checklist for Local Authorities and Health Commissioners23SECTION THREE: THE LEGAL FRAMEWORK 26Links to useful resources 36CALL FOR ACTION! 38Promoting good practice 38Meeting statutory expectations 38PRACTICAL RESOURCES TO DOWNLOADThe main aim of this research was to promote good practice in helping children andfamilies to keep in touch, when a residential placement has been made. This report includesresources to help local settings and service commissioners to review their policies andpractice: ‘What works?’ checklist for settings ‘What works?’ checklist for Local Authorities and health commissioners Families’ vision of good keeping in touch arrangements (colour graphic) Stop and Think! 5 key questions for residential settings and commissioners(colour graphic).These can be downloaded from www.pavingtheway.worksKEEPING IN TOUCH WITH HOME

INTRODUCTIONWHY LOOK AT THIS ISSUE?Thousands of children and young peoplewith learning disabilities live away fromhome for much of their childhood andadolescence in specialist residentialplacements. The data on them is poor, butwe know that over 60001 children boardin residential special schools, over 20002young people attend specialist collegeson a residential basis, around 1653 under18s and 7254 young adults (aged 18-25years) are in-patients in mental healthassessment and treatment units (ATUs) andan unknown number of disabled children(probably in the low thousands5) live inchildren’s homes.Residential placements can be a positivechoice for young people and their families,for example, moving away from home toattend a specialist college may supportthe transition to independent living andadulthood. However some residentialplacements are made in a crisis situation,following a breakdown in local support andservices and because specialist provision isnot available locally.6For children with the most complex needs,residential placements are often far fromhome, on a full-time basis and maintainedfor several years. The challenges of keepingin touch with family and friends at homecan be considerable, not least whenchildren have severe learning disabilitiesand little or no verbal communication.Family bonds are so important to all4children, but perhaps all the more tochildren who rely on those closest tothem – typically parents and siblings – tounderstand what they want and to helpcommunicate their wishes.The Challenging Behaviour Foundation(CBF), started by Vivien Cooper, whoseson moved to a residential school over 275miles away, supports families of peoplewith learning disabilities and behavioursdescribed as challenging. We know howdevastating the ‘shock of separation’7 canbe when a child or young person movesaway from home; and how difficult it is foreven the most committed of parents tomaintain a strong relationship with a childwith limited communication skills, living onthe other side of the country, while trying tobalance the needs of other family membersand the distance, time and financial cost.Unfortunately, unsupportive attitudes andinflexible rules in some settings add greatlyto these challenges.The central message running through thisreport is simple. Children have a right tofamily life and to know and be cared forby their parents. The presumption shouldalways be that families want to keep intouch and they should be supported to doso, if a child has to live away from home.This is so important to children and theirloved ones - and with the right attitudesand the right support, it is possible.1.Office of the Children’s Commissioner (2014) The views and experiences of children in residential special schools: overview report. London: OCC.2.Data not collected, this is an estimate from the sector’s representative body, Natspec.3.Initial data published by HSCIC on patients with a learning disability, autistic spectrum disorder and/or behaviour that challenges, who were inpatients at midnighton 30 September 2015. Available at us-initial-sep15-rep.pdf4.Data request to HSCIC (this age breakdown was not published); details as in footnote above.5.National statistics do not provide a clear figure due to problems with the way data is recorded. Residential special schools registered children’s homes offer over2,400 places (included in schools’ total; Ofsted Children’s Social Care statistics, March 2015). In addition, many disabled children who are looked after are placed inchildren’s homes.6.Gore et al, 2015, NIHR School for Social Care Research Scoping Review: Residential school placements for people aged under 25 with intellectual disabilities7.Quote from a mother involved in this research.8.Article 8 of the European Convention on Human Rights and Article 7 of the UN Convention on Rights of the Child.KEEPING IN TOUCH WITH HOME

WHICH CHILDREN AND YOUNG PEOPLE,IN WHICH SETTINGS?The research focused on children andyoung people aged 0-25 years with severelearning disabilities and behaviour describedas challenging, including those with autisticspectrum disorders. Many of these childrenand young people have little or no verbalcommunication. Mental health problems aremore prevalent in this cohort than their nondisabled peers. This combination of needs iscommon among children and young peoplein 52-week placements in residential specialschools and children’s homes. Some alsospend months or even years as in-patientsin mental health assessment and treatmentunits (ATUs), particularly during difficulttransitions to adulthood.THIS REPORTThe main aim of this research was topromote good practice in helping childrenand families to keep in touch, when aresidential placement has been made.Section One draws on our research withfamilies whose children or young people arein residential placements. It sets out theirvision of the support and attitudes neededto help them keep in touch in a colourgraphic. Key messages from families aresummarised in nine themes, drawing outboth positive and negative experiences.Section Two provides three detailed casestudies of practice in local settings whichshow much commitment to helping theiryoung people to keep in touch with home,and keeping families well informed andinvolved. It concludes with checklists forlocal settings, local authorities and healthcommissioners, to help them to review theirpolicies and practice.Section Three provides a detailed overviewof the legal framework, including humanrights, education, social care and mentalhealth legislation and guidance. Links areprovided to expert legal briefings which arefreely available online.9.With the time and resource available for thisproject, it was not possible to evaluate howfar local practice measures up to statutoryexpectations. But our research points togreat variability in residential settings’attitudes and approaches to upholdingchildren and young people’s right to familylife; and a lack of engagement by placingauthorities and service commissioners inpromoting and supporting this. Furtherresearch is needed to explore this importantissue further.The report concludes with a call to action toall those responsible for children and youngpeople in residential placements - includingLocal Authorities, health commissioners,Transforming Care Partnerships and centralGovernment – to drive much-neededimprovements in policy and practice.AUTHOR’S NOTEThis report represents the author’s views,based on the research described above. Mythanks to all who contributed, in particularthe parents who shared their experienceswith us and professionals in residentialsettings who got in touch to tell us abouttheir practice. Thanks also to members ofthe advisory group for their insights andthe wealth of experience they brought tothis project; and to Vivien Cooper, JacquiShurlock and Brittany Mulhearn of theChallenging Behaviour Foundation andto James Robinson of Mencap for theirsupport and valuable contributions to theresearch.This research was developed as part ofthe ‘Keeping in Touch with Home Project’delivered in partnership by the ChallengingBehaviour Foundation and Mencap. Theproject hopes to improve the supportoffered to families to help them keep intouch with children who are living awayfrom home for a long period, and is fundedby NHS England as part of the TransformingCare Programme.Anne Pinney, Independent Researcher,June 2016Schools offering 52-week placements are dual-registered aschildren’s homes. Research ref.: Gore et al, 2015 (as before).KEEPING IN TOUCH WITH HOME5

SECTION ONE:WHAT WORKS? LEARNING FROM FAMILIES OFCHILDREN IN RESIDENTIAL PLACEMENTSThis section summarises the key messagesemerging from our research with familycarers. All have children (some nowyoung adults) who live away from homein residential placements, in a wide varietyof settings – residential special schools,children’s homes, care homes, supportedliving, assessment and treatment units.Their children have complex needs, typicallyincluding severe learning disabilities,behaviour which can be challenging, andlittle verbal communication. Most hadexperienced several placements and therewere many examples of crisis admissions.Family-carers were invited by email to takepart in the research by the ChallengingBehaviour Foundation. The researchinvolved a focus group (which includedgenerating the two graphics), an onlinesurvey and a telephone interview. Parents6also provided valuable input to the project’sadvisory group. In all, twelve family-carerscontributed.While this is a small sample and may not berepresentative, it provides valuable insightsinto the barriers families can face in keepingin touch and involved, when a child has tolive away from home. Their experiences alsoshine a light on many positive examplesof individuals who were prepared to workflexibly and creatively to support andsustain family relationships.Some details have been altered to ensurethat individuals are not identified. Forreadability, we refer to family-carersas parents or carers, rather than usingboth terms. Similarly, we refer to sons ordaughters (him or her, his or hers) ratherthan to both genders repeatedly.KEEPING IN TOUCH WITH HOME

SUMMARY OF KEY MESSAGES FROM FAMILY-CARERSSTARTING OUT IN A NEW PLACEMENT1Let me help you to get to know my child, what makes him happy orsad, how he communicates and what his behaviour may mean. Learnfrom me and be prepared to be flexible in your approach.23Let’s sit down together at the outset and plan how we are going tokeep in touch with our daughter while she is living away from home.My son is not a blank page. He has a family, friends, a culturalidentity, a history and a future. Help him to feel at home by reflectingwho he is in his surroundings and activities.ACTIVE AND OPEN COMMUNICATION45I am a parent: I need to know if my child is happy, safe and well. Iwant to be kept informed day-to-day.I want a trusting relationship with the key worker(s) caring formy child. I want us to communicate actively, enjoying the goodmoments and working together through challenging times. Involve mein problem-solving, I know my child better than anyone.SEEING MY CHILD REGULARLY67My son doesn’t speak, so I need to see him to know all is well.Support him to use Skype (or similar) so we can see each other.Let me visit regularly and help us to make those visits a positiveexperience for all.RECOGNISING AND DEALING WITH EMOTIONS8I don’t know if I will ever get over the pain of my daughter having tolive away from home. Sometimes I feel overwhelmed and may needan advocate to help me to speak.9Sometimes we will disagree and sometimes things will go wrong.We need to work together when that happens. You need to see meas part of the solution, not part of the problem.KEEPING IN TOUCH WITH HOME7

STARTING OUT IN A NEW PLACEMENT1. Let me help you to get to know mychild, what makes him happy or sad, howhe communicates and what his behaviourmeans. Learn from me and be prepared tobe flexible in your approach.We prefer to get to knowthem ourselves.Please don’t visit in thefirst month.Advice given to parents by new settings (an ATUand a residential special school respectively).Several parents spoke of being asked tostay away when their child started in a newsetting, to allow staff to get to know them‘on their own terms’. Even a residentialspecial school which showed muchcommitment to supporting family visits andday-to-day contact, requested almost noinformation about their new starter from hisparents.One Mum reported that the Assessmentand Treatment Unit (ATU) which her sonhad been admitted to in a crisis, assumedthat she would drop him and leave; thiswas unthinkable at such a traumatic time,but the Unit’s policy was that visits couldcause anxiety and inhibit the patient’srecovery. The Consultant relented andthey established daily half hour visits anda strong working relationship, staying ina flat nearby throughout his treatment.The Consultant later observed that theseparents had played a positive role in theirson’s recovery.Another positive example involved a shortbreak setting, which worked closely witha mother in preparing to look after heryoung person. She made videos to showfor example, what her daughter enjoys10.8doing and how to help her in and out ofthe bath, to help train staff. This settingused ‘intensive interaction’10 to improvecommunication and trained both their staffand the family in this technique, so that ac