People with learning disabilities experience loss and bereavement - Analyse how services might support people in these circumstances.
"For many years people with a learning disability have had...forgotten grief and have often become forgotten people when it comes to meaningful support over the death of a loved one" (Read, 1997, p.5). This assignment will analyse how services might support people in these circumstances by examining the historical context of people with learning disabilities, considering the social model of disability, anti-oppressive practice and service delivery.
The World Health Organisation defines learning disability as "a state of arrested or incomplete development of mind", and somebody with a learning disability is said also to have "significant impairment of intellectual functioning" and "significant impairment of adaptive/social functioning" (World Health Organisation, 2001). This means the person will have difficulties understanding, learning and remembering new things which may result in difficulties with a number of social tasks, for example communication, self-care and awareness of health and safety (Northfield, 2001).
The day-to-day lives of people with learning disabilities and their families are affected by the way they are perceived and treated by the communities in which they live. Historically, public and private attitudes have been of intolerance and lack of understanding. The right to freedom from discrimination for people with disabilities, including those with a learning disability, has been enshrined in the 1995 Disability Discrimination Act, however there is still much to be done to change public attitudes (Mencap, 2002).
The creation of Poor Laws in 1834 and the subsequent building of 'asylums' and 'institutions' to remove people described as 'mad' from society continued into the early 20th Century. Reforming educationalists later succeeded in passing laws that encouraged the building of schools for 'feeble minded' children. However general opinion was that people with learning disabilities were inferior and should be segregated. This philosophy affected huge numbers of people admitted to institutions up until the late 1980s (Mencap, 2002).
Public concern due to increased media attention surrounding poor conditions in 'mental handicap' hospitals led to a 1971 government White Paper, 'Better services for the Mentally Handicapped'. This laid the foundations for 'care in the community'. Despite government intentions, services continued to be poor. Research into hospitals and other newer forms of residential care published in 1978 identified many failings; under-staffing, inadequate resources, poor standards of hygiene, lack of specialist services and extreme social isolation (Mencap, 2002).
The concept of 'normalisation' began to influence the delivery of care for people with learning disabilities during the 1980s. Normalisation theory recognised institutions as a major barrier to inclusion and emphasised the unique value of the individual, their right to choice and opportunity, and their right to extra support needed to fulfil their potential (Mencap, 2002).
The idea that everyone in society has the right to a life with choice, opportunity and respect, with extra support according to their needs, helped to change the way services were planned and delivered. The 1990 NHS & Community Care Act recognised the rights of disabled people to be an equal part of society, and to have the support they need (Mencap, 2002).
To enable people with learning disabilities to access ordinary facilities, changes in professional, parental and public attitudes are crucial. In today's society it is now generally accepted that people with learning disabilities have the right to live as independent lives as possible (Oswin, 1991). However, despite advances made in changing attitudes, in the area of loss and bereavement people with learning disabilities are not receiving enough consideration, or appropriate support.
In situations of grief, people are likely to behave in ways that are out of character, yet people with learning disabilities are rarely given the same level of understanding shown to people without learning disabilities (Oswin, 1991).
Before the needs of bereaved people with learning disabilities can be met, they must firstly be acknowledged. The social model of disability considers how society oppresses disabled people rather than viewing the disabled person as the 'problem'. It highlights specific areas for change, in particular identifying negative attitudes and communication barriers as major areas for improvement. It enables disabled people to express their situation in terms of human rights, taking the focus away from what disabled people cannot do and putting the emphasis on what society should do as a whole to bring about equality (Morris, 1997).
This philosophy recognises the emotional, physical, intellectual and social needs of people with learning disabilities. Emotional needs following the death of a loved one may include feelings of low self-esteem, depression and seeking reassurance from other relatives, friends and care workers. Examples of physical needs could result from the death of a parent, and having to move out of the family home "...so they also suffer the loss of home, possessions, local friends, pets, even their own clothes" (Oswin, 1991, p.27). Loss of appetite and the need for increased physical contact are also examples of physical needs following ...
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This philosophy recognises the emotional, physical, intellectual and social needs of people with learning disabilities. Emotional needs following the death of a loved one may include feelings of low self-esteem, depression and seeking reassurance from other relatives, friends and care workers. Examples of physical needs could result from the death of a parent, and having to move out of the family home "...so they also suffer the loss of home, possessions, local friends, pets, even their own clothes" (Oswin, 1991, p.27). Loss of appetite and the need for increased physical contact are also examples of physical needs following bereavement.
Intellectual, communication and language difficulties can prevent understanding; Oswin (1991) describes a widowed mother whose son wanted to go to the cemetery to dig up his father, he did not understand that his father had died, and what this meant.
Staff working with bereaved service users must be consistent in their language. Phrases such as 'passed away' or 'gone to sleep' may cause confusion; it is therefore essential that clear, honest explanations are used so the service user is in no doubt that the person has died (Read, 1997).
Social needs of bereaved people with learning disabilities must also be met, including listening and allowing them to talk about their grief. Communication problems can be overcome by using alternative methods of communication; storybooks, artwork and photographs may help the individual make sense of what is happening. Familiar daily routines should be continued as these provide a sense of stability and normality (Conboy-Hill, 1992).
To access the unique world of a bereaved person with learning disabilities "...requires an element of creativity and adaptability from the bereavement counsellors involved" (Read et al, 1999, p.104). However, Conboy-Hill (1992) argues that people with learning disabilities need access to ordinary counselling and support services, but professionals working in the field are not skilled to meet their specialised needs, and the services themselves are not free.
People with learning disabilities therefore have less opportunity to access bereavement counselling. Being unaware of bereavement services and having to be offered them means they are disempowered service users. Furthermore, if family and carers do not see the value in counselling then it is even more unlikely that the needs of bereaved people with learning disabilities will be met Conboy-Hill (1992). Other barriers to a person with learning disabilities accessing bereavement services, may be problems with communication (some service users communicate through Makaton) or challenging behaviour, in these instances the individual has even less opportunity to access counselling services.
Death and grief creates fears and uncertainty for most people, and the combination of bereavement and people with learning disabilities, is described by Oswin (1991) as "...a double taboo...usually considered so fraught that the problems have been swept under the carpet" (p.26).
Oswin, in 1991, wrote: "...despite all the advances made in changing attitudes to people with learning difficulties...in the area of loss and bereavement they are still not receiving...the appropriate support that they require" (p.26). In 2002, some eleven years on, support continues to fail most bereaved people with learning disabilities, depending largely on learning disability services and support in each individual service users' locality.
In April 1995 the 'Shoulder' bereavement project was initiated in Staffordshire specifically to address the bereavement care needs of people with learning disabilities. The project also supports people facing changes that sometimes follow bereavement such as moving from residential care into the wider community. It also offers support to professionals and parents caring for people with learning difficulties (Read, 2000). The project is free and is the only service specifically tailored to meet the bereavement care needs of people with learning disabilities in Staffordshire. Service users from other counties may access the project but have to travel to do so.
The Down's Syndrome Association UK run an Information Service dealing with queries including "...support for carers of relatively elderly people with Down's Syndrome with concerns about the future" (www.dsa-uk.com/frameset.htm). They produce a range of literature including one publication addressing death and bereavement, 'Depression in people with a learning disability' (Appendix A).
Down Syndrome Scotland (www.dsscotland.org.uk) offers support to parents and others and gives members the chance to share their experiences. Whilst they do not offer bereavement care services, they produce a range of publications including 'Let's talk about death' which discusses the feelings that may be experienced when a loved one dies (Appendix B).
Whilst people with learning disabilities are not excluded from accessing general bereavement counselling, the majority of support services cater for bereaved adults, children and young people and does not extend to people with learning disabilities who need a service that recognises their specific needs, welcomes and values them (Read et al, 1999).
'Cruse', despite being the leading UK nationwide charity for "anyone who has been affected by a death" and 'Winston's Wish', a nationwide charity meeting the needs of "bereaved children and young people" offers no support aimed specifically at people with learning disabilities, nor do their training and consultancy services specialise in working with people with learning disabilities (www.crusebereavementcare.org.uk and www.winstonswish.org.uk).
Read (1997) criticises the lack of specialist education, training and supervision for service providers working with bereaved people with learning disabilities, arguing it is crucial that service providers are adequately trained to know how best to care for these service users.
In May 2001, an 'ARC' (Association for Residential Care) report: 'Phase II Training & Development Outcomes Index Project' stated learning disability services had the least amount of trained staff. Government National Minimum Standards state 50% of service providers should be trained to NVQ Level 2 by 2005, yet in terms of service user group learning disabilities has the lowest qualification levels with nearly one-third of establishments having no qualified staff. Furthermore, despite the 'Valuing People' White Paper emphasising the importance of involving services users in the way staff are trained, learning disability services scored low on service user involvement in training issues (www.arcuk.org.uk/trainingservices/TDOIphase2report.pdf).
Despite ARC's findings, the organisation has contributed to the development of National Vocational Qualifications (NVQs) in Care and run training days, seminars and produce publications and activity packs to support staff working with people with learning disabilities (www.arcuk.org.uk/aboutarc/arcexplained.htm).
The 'British Institute for Learning Disabilities' run events and training courses aimed at helping service providers evaluate ways they can help people with learning disabilities understand their losses (www.bild.org.uk/certificates/training_and_support.htm).
A carer's role in providing support to a bereaved person with learning disabilities involves finding out how much the person knows, or what they need, and identifying what can be done to help. This is crucial as there are many circumstances when people with learning disabilities are not told about a death "...because it is thought that they will 'not understand' or 'will start fussing' or 'cause difficulties'" (Oswin, 1991, p.29).
It is extremely important that someone's loss and its significance to them are acknowledged. Communication must be clear, simple and truthful - alternative communication methods may be useful in helping the person come to terms with the situation (see p.4). It should not be assumed that a person does not feel grief because they cannot verbally express it (Oswin, 1991).
Social care workers can help service users by recognising that all people grieve, regardless of learning disability. Staff should be able to recognise common responses to loss and if a person with learning disabilities displays such responses, it should not be regarded as 'problem behaviour'. Sadness, anger, irritability, anxiety, over-sensitivity, dependency, becoming withdrawn, lacking interest and forgetfulness are all normal grief reactions and they should be recognised for what they are - natural reactions to grief (Thomas 2000).
Teaching an emotional vocabulary by using creative helping approaches such as encouraging the use of words, drawing pictures or painting can help to express feelings and emotions. Involving the individual as much or as little as they want, before, during and after the death, provides them with the opportunity to be included in the rituals surrounding death (Read, 2000).
Changes in behaviour may indicate that a person is struggling to make sense of their grief. It is better for carers to be over cautious and refer someone to counselling than to be under cautious and allow a person with bereavement care needs to be unsupported. Conboy-Hill (1992) recognises the complexity of cognitive ability, limited attention span and limited emotional vocabulary in people with learning disabilities and suggests that an average one-hour counselling session could be too demanding and 15-minute sessions would be more appropriate.
People with learning disabilities are often viewed as children by society. While researching this assignment, the writer contacted 'The Child Bereavement Trust' explaining specifically what information was required. The writer received information relating to bereaved children, but nothing relating not to bereaved people with a learning disability (Appendix C).
This common assumption, that it is acceptable to treat people with learning disabilities as children, results in service users failing to receive appropriate help because families or care workers think they do not understand death. Silence, lack of questions or apparent indifference by a person with learning disabilities may be interpreted as a lack of awareness or understanding, or as a state of coping that should not be disturbed. Whilst well intentioned, this can do more harm than good, e.g. not allowing the person to attend a funeral, may mean they will always expect to see that person again (www.dsscotland.org.uk).
Different therapies may help a bereaved person with learning disabilities come to terms with their loss. The use of behaviour therapies, such as reminiscence work, drama, poetry, family trees, photography and life story work helps service users understand or explain their feelings better than words alone. Drug therapy may be necessary to help people with learning disabilities, e.g. if their bereavement causes loss of weight and poor sleep, anti-depressants may be prescribed (Down's Syndrome Association, 1996).
Thompson (2001) describes oppression as: "inhuman or degrading treatment of individuals or groups" (p.34). Anti-oppressive practice seeks to combat all forms of oppression through the ways in which it is practised. Prout & Strohmer (1994) suggest that when caring for people with learning disabilities, true anti-oppressive practice should take into account issues such as cultural diversity - showing respect for users' cultures and views, and dealing sensitively with differences in people's backgrounds. This could include showing photographs of temples, Saddhus/Bhikshus (Hindu/ Buddhist priests), explaining funeral rituals and dressing appropriately, e.g. it is customary to wear white to a Hindu funeral.
This assignment has concentrated on loss through bereavement; however social care workers should also acknowledge other losses. Leaving friends behind when moving into different residential settings or a member of staff leaving may feel like a form of bereavement. A pet dying can cause grief and if parents divorce or separate, one parent leaving the family home can constitute a loss - likewise when siblings leave home. Any loss felt by a person with learning disabilities should be recognised by staff and the service user should be listened to and have opportunities to talk about their sadness (Oswin, 1991).
All people in situations of grief are likely to behave in ways that are out of character, yet people with learning disabilities are rarely accorded the understanding shown to others (Oswin, 1991).
Having a learning disability does not stop a person from feeling, from expressing emotion or from missing loved ones when they die. By addressing the special requirements that a bereaved person with learning disabilities may have, appropriate bereavement counselling and support can be made more accessible to those who need sensitive help and support (Read et al, 1999).
Nearly all long-stay hospitals are now closed and many rights are now enshrined in the 1995 Disability Discrimination Act, however the reality is that many people with learning disabilities are still denied equal treatment and social inclusion. This assignment has demonstrated that the greatest challenges facing agencies working to improve the lives of people with learning disabilities are to change public attitudes, raise understanding and provide appropriate services (Mencap, 2002).
BIBLIOGRAPHY (TEXTS/JOURNALS/PUBLISHED PAPERS)
Conboy-Hill, S., 1992 in Waitman A. & Conboy-Hill, S (Eds), 1st Edition, Psychotherapy & mental handicap, London, Sage Publications
Down's Syndrome Association, 1996, 1st Edition, Depression in people with learning disability, London, Down's Syndrome Association
Morris, J., 1997, 1st Edition, Community Care: Working in partnership with service users, London, Venture Press
Oswin, M., 1991, 1st Edition, Am I allowed to cry? - A study of bereavement amongst people who have learning difficulties, London, Souvenir Press
Prout, H. T. & Strohmer, D.C. (Eds), 1st Edition, Counselling & psychotherapy with persons with mental retardation & borderline intelligence, New York, Clinical Psychology Publishing
Read, S., 1997, 1st Edition, A sense of loss: working with loss and people who have a learning disability, Nursing Standard Learning Unit 071, 11 (36)
Read, S., Frost, I., Messenger, N. & Oates, S, 1999, 1st Edition, Bereavement counselling and support for people with a learning disability: identifying issues and exploring possibilities in British Journal of Learning Disabilities, Vol. 27,
Read, S., 2000, 1st Edition, A year in the life of a bereavement counselling and support service for people with learning disabilities, Journal of Learning Disabilities, London, Sage Publications
Thomas, J., 2000, 1st Edition, Someone died - it happened to me, High Wycombe, Child Bereavement Trust
Thompson, N., 2001, 3rd Edition, Anti-discriminatory practice, Basingstoke, Palgrave
INTERNET BIBLIOGRAPHY
Association for Residential Care, ARC explained, www.arcuk.org.uk/aboutarc/arcexplained.htm, accessed: 01/05/02
Association for Residential Care, ARC explained, www.arcuk.org.uk/trainingservices/ TDOIphase2report.pdf, accessed: 01/05/02
British Institute of Learning Disabilities, Training and support, www.bild.org.uk/certificates/ training_and_support.htm, accessed: 18/04/02
Cruse Bereavement Care, Cruse bereavement care, www.crusebereavementcare.org.uk, accessed: 20/04/02
Down's Syndrome Association UK, Factsheets, www.dsa-uk.com/frameset.htm, accessed: 28/04/02
Mencap, Changing attitudes to people with a learning disability, www.mencap.org.uk/html/ about_mencap/changing_attitudes.htm, accessed: 18/04/02
Northfield, J., British Institute of Learning Disabilities, Learning disability factsheet, www.bild.org.uk/information/factsheets/what_is_learning_disability.htm, , written: 20/07/01
Scottish Down's Syndrome Association, Information, www.dsscotland.org.uk, accessed: 28/04/02
Winston's Wish, Winston's wish, www.winstonswish.org.uk, accessed: 20/04/02
World Health Organisation, 2001, World Health Report 2001 - Mental health: New understanding, new hope, www.who.int/whr/2001/main/en/chapter2/002e6.htm, accessed: 02/05/02
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