MENTAL HEALTH

Count us in: the role of schools and colleges inmeeting the mental health needs of young peoplewith learning disabilitiesBarry Carpenter and Hazel Morgan

Introduction‘I will celebrate myself and sing myself.’ When DaveS t ewa rt, headteacher of the Shep h e rd School inNottingham, gave oral evidence to the Foundation forPeople with Learning Disabilities’ Committee of Inquiryinto meeting the mental health needs of young people withlearning disabilities, he used this quotation from WaltWhitman. He wanted to bring the experience of these youngpeople into the fo regro u n d. This re s o n ated with theaspirations of committee members. Young people withlearning disabilities should be supported to feel good aboutthemselves and enjoy their achievements. Schools andcolleges, along with families, will have a crucial role to playin supporting the development of their self-esteem.

The Mental Health Foundation (of which the Foundationfor People with Learning Disabilities is a part) regularlyholds committees of inquiry into mental health issues. InB right Futures (Mental Health Fo u n d ation, 1999), anearlier inquiry report on promoting the mental health ofchildren and young people, learning disabilities had been

identified as a risk factor for mental ill-health. This inquiryhad been unable to explore their needs fully, however. Atthis time, the Foundation was holding focus groups bothwith pro fessionals, fa m i ly care rs and young peoplethemselves. Young people spoke of their desire to lead thesame lives as their brothers and sisters but said that therewere many obstacles in their path. This raised questionsabout the impact on their mental health.

In 2001, the Fo u n d ation for People with Learn i n gDisabilities set up an inquiry into meeting the mental healthneeds of young people with learning disabilities. Its termsof reference were to:

• review and report on interventions to promote theemotional well-being of young people with learningdisabilities;

• identify good practice and make recommendations fordevelopments in policy and practice to promote theemotional well-being of young people with learningdisabilities;

• review and report on services to meet the mental healthneeds of young people with learning disabilities;

• identify good practice and make recommendations fordevelopments in policy and practice to meet the mentalhealth needs of young people with learning disabilities.

Its findings and recommendations were incorporated in areport, Count Us In (Foundation for People with LearningDisabilities, 2002).

The inquiry processThe inquiry took place over one year and the committee metsix times between October 2001 and July 2002. The firstmeeting was informed by a literature review and discussionp ap e rs we re commissioned on specific topics fo rsubsequent gatherings. Members of the committee weredrawn from throughout the UK and from a range ofprofessional backgrounds. Three were family carers. TheD ep a rtment of Health and Scottish Exe c u t ive sentobservers. Professor Barry Carpenter was committee chairand Dr Mary Lindsey vice-chair.

The DfES re c e ived the committee pap e rs and seniorofficials met on two occasions with members of the inquirycommittee.

In December 2002, the Foundation for People withLearning Disabilities’ Committee of Inquiry into themental health needs of young people with learningdisabilities produced its report.

Barry Carpenter, Chief Executive at Sunfield andChair of the committee, and Hazel Morgan, head ofthe Foundation for People with Le a rning Disabilities,take this opportunity to share some insights intothe workings of the committee and summarise thekey findings. The committee drew evidence from arange of sources, but placed the voices andexperiences of young people with learn i n gdisabilities at the centre of their proceedings. Thecommittee’s findings and recommendations werewide ranging and will have far- re a c h i n gimplications, but there are immediate messagesthat schools and colleges should hear. It is uponthese messages, taking account of pastoralp rovision, the curriculum, transition and inter- a g e n c ywork, that Barry Carpenter and Hazel Morgan focusin this article.

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The Foundation was committed to including the voice ofyoung people with learning disabilities and their families.David Green and Emma Wilson from Generate (formerlyWandsworth Rathbone), supported by their facilitators,made presentations at each of the meetings about focusgroups they had held with young people with learningdisabilities. They talked to groups of young people in aspecial school and in a further education college, as well asin voluntary groups.

Accessible survey forms in two versions, one using picturesand the other using Widget software, were sent out to anumber of special schools and colleges and placed on theFo u n d at i o n ’s web site, asking respondents about theiremotional well-being. Ultimately, 98 forms were returnedand analysed to give a picture of the sources of happinessand sadness for these young people and how they dealtwith unhappiness. A small number of families gaveevidence in writing and through telephone and face-to-faceinterviews.

Questionnaires for professionals were distributed throughadvertising in specialist journals and information on theFoundation’s web site. Some 700 forms were sent to staff inspecial schools and further education colleges, socialservice departments, health trusts, research departments,and in child and adolescent mental health services. Oralevidence was taken at each meeting from professionals andfrom family carers. Focus groups were held in Belfast,Cardiff and Glasgow and members of the committee madevisits to further inform the inquiry.

The importance of schools and collegesA clear remit for the Committee of Inquiry was thec o n t ri bution of all major service prov i d e rs. It wa srecognised from the outset that education has a key role toplay. For too long, teachers have been told that mentalhealth issues are not their problem. However, latterly theclimate has changed; the DfES (2001) has published helpfulguidance on Promoting Children’s Mental Health withinEarly Years and School Settings. A Mental Health Adviserhas also been appointed to the DfES. At last it is becomingpossible for teachers to talk positively and creatively aboutthe emotional well-being of their pupils.

Indeed the figures are compelling – the Office of NationalStatistics (Melzer, Gatward, Goodman & Corbin, 2000)reported that one in five children has special educationalneeds, but that those children are three times more likely tohave mental health problems.

The age focus for the Committee of Inquiry was 13 to 25years, and the committee recognised that schools andcolleges are integral to supporting young people duringtheir adolescence and into early adulthood. They have as p e c i fic role to play, fi rs t ly in ack n ow l e d ging thevulnerability of young people and the risk to their mentalhealth during this age period and secondly, therefore, informulating the first line response. Schools and collegeswill see the indicat o rs of mental ill health and the

disintegration of a young person’s emotional well-being.Staff in schools and colleges must ensure that there arestrategies for action within their pastoral system in order tosupport young people during these times, and that theythemselves know how to refer young people to otheragencies should additional support be required.

Throughout the inquiry we constantly asked ourselves:‘How do we keep our young people emotionally strong?’The pressures on them in modern society are enormous butthis art i cle sets out to ex p l o re some of the potentialresponses presented to the Committee of Inquiry.

A whole-school approachAtkinson and Hornby (2002) recommend a framework forpromoting mental health in schools which focuses upon:

• school ethos;• whole-school organisation;• pastoral provision;• curriculum practice.

How young people are perceived and valued in a schoolwhen they have learning disabilities is extremely important.This applies both to special and to mainstream schools.Managers within school systems have a real responsibilityfor ensuring that inclusive practices benefit the youngperson in all aspects of their development. To fulfil thisresponsibility the pastoral provision within a school needsto be responsive and have the capacity to support individualneeds as well as promoting good mental health among thestudent population as a whole.

Yet it is in the classroom that the young person withlearning disabilities will be most at risk. The demands ofthe classroom environment can generate confusion andpersonal trauma if the teaching and learning strategies arenot explicit. The curriculum has to be a responsive vehiclefor meeting individual needs and empowering the youngperson to make confident decisions and choices. Jordan(2003) has highlighted, in relation to young people withautistic spectrum disorders, approaches such as cognitiveteaching where young people are given strategies such as‘plan – do – reflect’, and explicit teaching for meaning andintention. Luke Jackson (2002), a young man with Aspergersyndrome, recalls how the normal pace of a secondaryclassroom left him feeling confused. He needed specificsignals for listening and visual support for oral instructionsgiven as part of any lesson. Further he recalls how manyteachers failed to understand this and thus berated him,which did little for his self-esteem.

Curriculum opportunitiesThere are inbuilt opportunities within the curriculum thata l l ow schools to give positive support to the emotionalwell-being of their young people with special educationalneeds. These particularly rest in personal, social and healtheducation (PSHE) and citizenship which has recently beengiven statutory status as a curriculum subject at Key Stages3 and 4. Within these subjects there are opportunities for

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young people to look at personal development, activecitizenship, relationships, and their own health and safety.Through PSHE, young people can gain the knowledge,skills and understanding to:

• take and share responsibility;• feel positive about themselves;• participate and take part in discussions;• make real choices and decisions;• meet and talk and work with people;• develop relationships through work and play;• consider social and moral dilemmas;• ask for help/find information and advice/provide

advice;• prepare for change.

Young people with learning disabilities can deve l o pconfidence and responsibility through these curriculumareas, particularly in relation to self-esteem, self-awarenessand self-advocacy. Lawson and Fergusson (2001) describeh ow positive self-image can be taught through young peoplel e a rning about themselves, their ap p e a ra n c e, ab i l i t i e s ,strengths and weaknesses, likes and dislikes, own feelingsand personal qualities. For many young people withl e a rning disabilities the wo rld carries many illogi c a laspects. They have difficulties grasping the value system,and this needs to be made explicit to them, enabling them todetermine their own values within a moral framework(deciding, for example, what is fair and unfair, right orwrong).

Promoting emotional resilienceA useful concept, which emerged in the inquiry, was that ofemotional resilience. In practice this would involve youngpeople learning a range of problem-solving strategies, forexample, that there is more than one way to look at as i t u ation and more than one possible solution.Communication skills such as assertiveness and negotiationare crucial, and these can be aided by ‘scripts’ whichexplore a range of social situations. This approach givesyoung people an opportunity to practise and rehearsesituations. Hearsey (2003) advocates this as a way of copingwith anxiety, a feeling that young people giving evidence tothe inquiry reported many times. Through the scripting of as i t u ation, young people can enhance their socialunderstanding and clarify what is expected of them andother participants in a social setting. Scripting teachescoping strat egies and can incorp o rate activities tominimise anxiety and develop appropriate communicationstrategies. It is important that young people know whatsupports are available to them, and how and when to usethem.

This has particular implications for pastoral systems inschool. Do young people with learning disabilities feel ableto approach their tutor? Is there a clear system to enableyoung people to contact the senior manager responsible forpastoral work? Is there a school counselling system, eitherthrough a visiting counsellor or sixth formers offering peermentoring?

Support through transitionsThe potent cocktail of significant learning diffi c u l t i e scombined with the illogical hormones of adolescence meanthat there are many pitfalls during this age phase for youngpeople with special educational needs, and none more sothan in times of transition. There are also many transitionpoints for young people in the age ra n ge 13 to 25, andthese can be challenging and potentially disorientating.Young people with learning disabilities need to be wellprepared with a range of strategies to deal with those majort ransitions, such as from secondary school to furt h e reducation, from school to the workplace, or from home toindependent living. Nothing is straightforward for them.The committee heard oral evidence about the importance ofestablishing links between school and college so that, forexample, contact is made from the age of 14 plus. Inductioncan take place over a period of time including weekends andh o l i d ays and young people can play a full part innegotiating their learning goals.

Transition in life inevitably brings with it change and thiscan invoke a sense of intense loss in young people, perhapsthrough leaving a friendship group that was supportive tothem. It is important that the curriculum prepares them tocope with loss, and to develop processes of personaldecision making, personal choice and self-determination.This may be ach i eved through the setting of simplegoals.

The importance of meaningful opportunitiesIn the inquiry, families would describe a lack ofopportunities for their son or daughter upon leaving schoolt h at left them disheart e n e d, disappointed and,understandably, depressed. In England, the ConnexionsService has the potential, through its personal advisers, toco-ordinate agencies to enable young people to makechoices and lead a more satisfying life after they leavefull-time education.

Working with other agenciesHowever, again and again the Committee of Inquiry heardof young people and their families precipitated into whatone parent called ‘a nightmare’ when their son or daughterbegan to develop emotional behavioural problems, veryoften an unders t a n d able response to incidents orexperiences anyone would find difficult. There seemed tobe particular problems for families where their child’s needsexceeded the remit and responsibilities of the school orc o l l ege and re fe rral to ex t e rnal agencies was needed.Parents recalled the difficulties in accessing child andadolescent mental health services; they described a lack ofresources that effectively imprisoned young people in theirfamily home because there was no one to help themovercome the anxiety or depression that stopped them goingout. The alternative often offered was simply to prescribemedication for their son or daughter and to ignore the rootcauses of the pro blem. Fe a rs we re ex p ressed ab o u texcessive reliance on medication. One parent said: ‘Our sonwas over-medicated to the extent that he could hardly standup and slept excessively.’ The inquiry findings indicated the

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importance of a range of agencies, including schools andcolleges, working together to provide the support for youngpeople in a holistic way. In each area, there needs to beclarity about care pathways so that young people do not fallthrough the gaps between services but gain the support theyrequire. Without this continuity of approach, their schoolexperience will be fragmented leading to lack of academicattainment.

Hearing the voice of young peopleIn their recent book Encouraging Voices, Shevlin and Rose(2003) rep o rt the ex p e rience of young people withdisabilities who describe how low expectations have had an egat ive influence on their school care e rs and theirsubsequent life paths. In the evidence given to the inquiry,young people themselves reported the following factorswhich were important in their lives:

• Friendships – ‘I just like hanging out with myfriends.’

• Social activities – ‘It makes me sad when they don’task me to play football.’

• Work opportunities – ‘I have a job working in a cafetwo days a week and I get paid money for that. I feelbetter doing all these things.’

• Money – ‘We arranged for 15 hours worth of directpayments for Thomas to choose someone of his ownpeer group to help him access activities.’

• Further education – ‘Jackie was very clear about herwish to go to university, and get a certificate incooking.’

If we are to create an educational environment that willaddress the emotional well-being of all young people,whatever their needs, then we have to begin by listening toyoung people themselves. As Shevlin and Rose (2003)s t ate: ‘Really hearing their pers p e c t ives and concern sprovides the ideal starting point.’ This is particularly true ifwe are to value diversity and develop inclusive schools thatcan offer an inclusive curriculum.

Empowering adolescenceSo what is the answer to the question: how do we keep ouryoung people emotionally strong? Below are some of thefa c t o rs that can empower adolescents with learn i n gdisabilities:

• feeling that they are a respected and valued member ofthe school, college and family community;

• becoming more stress resilient, including learning todeal with failure;

• learning to expect to succeed and assume control;• learning about personal strengths and weaknesses;• learning higher cognitive and independent learning

skills;• learning to deal with a range of people and situations.

The responsibilities of schools and collegesThere are particular implications for schools and collegesfrom the 23 recommendations of the inquiry:

1. Inclusion – Young people who present mental healthneeds during their school or college careers should notautomatically be excluded. They should be respectedand valued and given opportunities to enjoy the qualityof learning experiences that will help to address someof these needs.

2. I n fo rm ation – Young people need info rm ation about howto keep themselves mentally healthy just as they needinformation on other health issues such as drugs ands ex education. The Fo u n d ation for People with Learn i n gDisabilities (2003a; 2003b) has produced accessibleinformation for young people and their families.

3. Promoting positive mental health – The emotionalwell-being of young people should be a major concernof all schools and colleges, and through their ethos andcurriculum they should enable young people to developtheir self-esteem and self-efficacy.

4. Planning – All prov i d e rs of education should ensure thatthey do not discriminate against students with specialeducational needs and mental health problems, and thattheir policies are pro a c t ive and progre s s ive ly improv i n gaccess and inclusion for this group of young people.

5. In-house structures – In addition to a strong pastoralsystem within a school, the Special Educational NeedsCo-ordinator (SENCo) should have the designatedresponsibility for providing information and supportingthe needs of young people with special educationalneeds and mental health problems.

6. Service networks – Schools and colleges should beaware of the agencies that can offer them additionalsupport for their work with young people with mentalhealth needs, and which agencies they should refer towhen situations become complex.

7. Training – There is a need in all phases of teachereducation to make the profession more aware of mentalhealth needs in young people generally, andspecifically for those with special educational needs.

Emotional difficulties are part i c u l a rly common in adolescence,and anxiety, depression, phobias and behaviour difficultiesmay be features of this time of life (Emerson, 2002). Thisinquiry has highlighted how a failure to meet their mentalhealth needs particularly affects the lives of young peoplewith special educational needs and learning disabilities. Ithas been an all-encompassing inquiry, seeking informationand representation from all sections of the United Kingdom.It has, through its rep o rt and re c o m m e n d ations (Fo u n d ation fo rPeople with Learning Disabilities, 2002), tru ly ack n ow l e d ge dthe central role of schools and colleges in supporting youngpeople throughout this ever-changing phase of their lives.

There is now a clear evidence base to support schools andcolleges in adapting their systems and modifying theircurricula to ensure that emotional well-being is promotedand mental health problems prevented. The inquiry heldc e n t ral to its wo rk the voice of the young peoplethemselves. Every meeting was grounded in their views andinformed by their opinions. The report stands firmly withthis marginalised group of young people in advocatingCount Us In.

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ReferencesAtkinson, M. & Hornby, G. (2002) Mental Health

Handbook for Schools. London: Routledge.DfES (2001) P romoting Childre n ’s Mental Health Within Early

Ye a rs and School Settings. Nottingham: DfES Publ i c at i o n s .E m e rson, E. (2003) ‘The prevalence of psych i at ric disord e rs

in children with and without intellectual disabilities’.Jo u rnal of Intellectual Disability Research, 47 (1), 51–58.

Foundation for People with Learning Disabilities (2002)Count Us In. The Report of the Committee of Inquiryinto Meeting the Mental Health Needs of YoungPeople with Learning Disabilities. London: MentalHealth Foundation.

Foundation for People with Learning Disabilities (2003a)Meeting the Emotional Needs of Young People withLearning Disabilities: a booklet for parents and carers.London: the Mental Health Foundation.

Fo u n d ation for People with Learning Disabilities (2003b) A l lAbout Feeling Down: a booklet for young people withl e a rning disabilities. London: the Mental Health Fo u n d at i o n .

Hearsey, K. (2003) ‘Behaviour and anxiety in youngpeople with autistic spectrum disorders’. Paperpresented to the TEACCH UK 2003 Conference,University College Northampton, June 2003.

Jackson, L. (2002) Freaks, Geeks and Asperger Syndrome.London: Jessica Kingsley.

Jordan, R. (2003) ‘Mental health needs of individuals withautistic spectrum disorders’. Lecture to the ConferenceMental Health and Young People with AutisticSpectrum Disorder, Worcester, May 2003.

L awson, H. & Fe rgusson, A. (2001) ‘PHSE and Citize n s h i p ’ ,in B. Carpenter, R. Ashdown and K. Bovair (eds)Enabling Access: effective teaching and learning forpupils with learning difficulties. London: David Fulton.

Melzer, H., Gatward, R., Goodman, R. & Corbin, T.(2000) Mental Health of Children and Adolescents inGreat Britain. Survey carried out on behalf of theDoH, the Scottish Executive and the Welsh NationalAssembly. Office for National Statistics.

Mental Health Foundation (1999) Bright Futures:promoting children and young people’s mental health.London: Mental Health Foundation.

S h evlin, M. & Rose, R. (eds) (2003) E n c o u ragi n gVoices: respecting the insights of young people whohave been marginalised. Dublin: National DisabilityAuthority.

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AcknowledgementsThe Foundation particularly wishes to acknowledge thegenerosity of the Baily Thomas Charitable Fund, whichmade the inquiry possible, and to thank the Fund’s trusteesfor their support and advice.

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Address for correspondenceHazel MorganFoundation for People with Learning Disabilities83 Victoria StreetLondonSW1H OHWEmail: hmorgan@fpld.org.uk

Manuscript submitted: July 2003Accepted for publication: September 2003

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