Social Needs of Older People with Learning Disabilities - Research Paper Example

What are the Health and Social Care Needs of Older People with Learning Disabilities? Introduction This study addresses an important and often overlooked subject, ageing with a lifelong disability, such as learning disability. It deals with an area of major tension for social work policy, namely how best to plan for the lives of people whose needs and circumstances commonly fall into the interstices separating disability services and services for older citizens (Bland et al., 2003, 323-324). It is a dilemma that has not yet been satisfactorily resolved, not least because the challenges involved have been far from adequately deconstructed. Background Comprehensive population based studies (Cooper, 1998, 212-220) in the UK has revealed that people with learning disabilities aged 65 years or older include equal number of men and women, and many of them may have profound learning disabilities, probably relating to a differential mortality rates. They also differ in aetiology of learning disabilities as opposed to younger individuals (Cooper, 1998, 212-220). The most important feature of the social lives of these people relevant to social work is that fewer elderly people with learning disabilities live with relatives. Drawing upon the UK scenario, the majority of these subjects reside in residential care settings (Hatzidimitriadou and Milne, 2005, 341-359). They tend to use both learning disabilities services and services designed for the general population of older people. Their social networks are restricted, and as a result, their time spent in enjoyable social interactions and activities are quite limited (Cambridge et al., 2005, 1039-1062). This suggests that the current social and healthcare services are not yet sufficient to meet the needs of these people. Therefore, a social work research is indicated to determine the needs of this population so an appropriate service can be designed depending on these needs (Alborz, McNally, and Glendinning, 2005, 173-182). In developed countries, people with learning disabilities are living much longer, and therefore able to experience the joys and tribulations of all the life cycle demands like everyone else (Stanley, 1998, 23-30). This therefore puts a premium on supports and care being available to help people to anticipate and plan to realize their hopes and dreams throughout the life span. Besides having considerable resource implications, it also suggests the importance of understanding ways in which the expertise of informal as well as formal care supports both in the social and health fronts can be harnessed in ways that serve these people’s interests as they age. Health is one of the most vital qualities of everyday life (Cambridge, 1999, 393-415). When it is jeopradised, this becomes a salient and central concern. Despite advancement of science and human desire to lead a quality life even at the terminal stages has led to the concept of making sense of health and health care (Cooper, 1997, 331-338). A person-centred approach puts emphasis on individual experiences, perception, and satisfaction about the care provided in the existing system, and the social realities of health and illness are thus obvious areas of focus while understanding these needs which distinguishes modern life (Holland, 2000, 26-31). The idea of the patient as a social actor corresponds well with the empirical problem of the patients behaviour that had been discovered in medico-social surveys. Ageing with a lifelong learning disability is a relatively new phenomenon (Bowey and McGlaughlin, 2007, 39-54) which is illustrated by the dramatic changes in life expectancy for people with learning disabilities from about 20 years in 1930 to 70 years in 1993. Ageing throws up new opportunities and challenges not for only individuals and their families but also for the helping professions and human service systems. Research on the characteristics, needs and aspirations of older people with a lifelong learning disability and related policy and service developments are of recent origin (Bowey and McGlaughlin, 2005, 1377-1392). Responding effectively to ageing with a learning disability is very much uncharted territory for human services. Neither Disability nor Aged and Community Care service systems have significant experience, knowledge or expertise around the issues it presents, nor of strategies for tackling these. Evidence suggests that many older people with lifelong disabilities are not ageing successfully. They have high rates of unmet health needs (Concannon, 2008, 131). Thus with people living longer, the global trends are to prevent premature institutionalization. Although this is a workable solution, this prevents independence (Lennox et al., 2003, 34-50). It has been suggested that introduction of government acts, policies, and social care strategies can effectively contribute to supporting older people in maintaining their health, safety, and independence and psychological health (Lindsey, 2002, 138). This is only possible keeping the needs of these people at the heart of the matter and by considering existing and future care needs of such people. Justification Therefore, it can be safely stated that despite the increase in the numbers of older people with learning disabilities, the age and disease related health and social care needs of this population is yet to be researched, understood, and addressed. Consistent endeavour by social and healthcare providers has led to some positive development, but the current provision of service is quite fragmented with very limited resource and choice of specialist care (Abbott and Mcconkey, 2006, 275-287). Although there are policies, there is no consistency in meeting and application of those policies in reality. Due to confusion and lack of clarity about the health and social care needs of this population, service planning is hardly coherent and person-centred (Cassidy et al., 2002, 123-126). As a result, there is gap in care delivery where the elderly with learning disability receive poor-quality non-specialist care since the staff is inadequately trained to manage and to intervene in often multiple and complex needs of this user group. Therefore, there is need for co-joined service development involving both social and healthcare and research challenge in this emerging field (Kerr, 2004, 200-206). More specifically, if older people with learning disabilities are to receive quality care, a coherent service planning system that involves articulated agency partnerships, information and research about care needs, research information-based practice developments (Caffrey and Todd, 2002, 223-233) in the field of learning disabilities in the elderly, gerontology and dementia care that are linked to evidence about effective models of care, which incorporates users and their perspectives in the planning would be essential (Hatzidimitriadou and Milne, 2005). Objectives The organization of care management in the community in terms of social and health care of the elderly people with learning disabilities is erratic and inconsistent due to difficulty involving person-centred social and health care management in their localities through knowledge of their care needs (Manthorpe, 2003, 269-281). This is necessary due to incomplete knowledge, lack of inclusion of these people in mainstream care provisions, and lack of integration of care in the wider policy and practice context (Gravestock and Bouras, 1997, 197-199). To be able to do this, evidence will be sought from literature to design a methodology to assess care needs in the wider social and healthcare practice contexts. Aims To design a research methodology to enhance knowledge about the social and healthcare needs of elderly people with learning disabilities. Review of Literature Research is an important aspect of social work practice and services. As in this case, research may shed light on the processes and outcomes of practice, thus assisting in knowledge building and skills for practice. In addition, most practitioners undoubtedly are aware of the increasing interest in evidence-based-practice (EBP) within social work and other helping professions, including medicine (Dyeson, 2005, 316-319). EBP involves a process of systematically searching and evaluating current research related to a particular clinical problem in order to inform and guide practice with the best evidence available. It is reflective of a desire on the part of many social work researchers to develop a systematic, research-validated knowledge base for practice (Webb, 2001, 57-79). In this relation an inclusive qualitative research would be useful. The issues of what makes inclusive research, how it is done and what its implications are, are contentious for all those involved in it (Redmond, 2005, 75-86). The principles upon which inclusive research is based are as follows: that research must address issues which really matter to people with learning disabilities, and which ultimately leads to improved lives for them, that it must access and represent their views and experiences, that people with learning disabilities need to be treated with respect by the research community (Fook, 2002, 79-85). Therefore, there is a need for context that must correlate with the criteria above. A contextual qualitative enquiry has something to offer to both practice and research. The social workers need contextualized usefulness, not decontextualized statistical power of a quantitative design, since the context provides meaning to the work. The centrality of context in research also assigns a value to observations both for research and social work practice (Higham, 2001, 197-212). Even when social workers are able to gather extensive information prior to intervention, skilled clinicians recognize that they are basing the treatment decisions on a “working hypothesis” about the client’s problem, its causes, and its solution. This tentative hypothesis is validated, refined or totally rejected in the course of treatment as new information about the client’s situation emerges (Orme and Powell, 2008, 988-1008). Since it has been determined that the prospective client can benefit from what the social worker and the agency have to offer, further specification must take place in the assessment process. This process involves refining and coherently organizing information about the client’s problems and needs in order to determine appropriate targets of social work intervention (Hughes, 1997, 110-114). In most cases clients have presenting problems that consist of many interrelated difficulties that may require intervention. In addition, any instruments used to gather information must be reliable and valid among the group of people to which the client belongs as a member. The information gathered must then be interpreted with awareness of clients’ world view and cultural norms (Montigny, 2007, 95-120). Further, when determining eligibility, social workers must examine whether the services offered are respectful of clients’ needs within their cultural contexts. Finally, the prioritization and specification of problems and goals for intervention must be compatible with the client’s cultural values and beliefs (Hugman, 2003, 1025-1041). Three key research concepts that directly relate to the adequacy and accuracy of information are reliability, validity, and representativeness. Reliability refers to the extent to which the information gathered is internally consistent. Validity concerns the accuracy of the information. Representativeness involves the extent to which the information gathered characterizes the clients’ life circumstances (Springer, Abell, and Hudson, 2002, 408-439). The research interview is perhaps the most powerful and versatile of techniques for gathering information directly from another person. Successful interviewing requires that interviewers give a good deal of attention to the research instrument as well as to their role in the interview situation. The interviewers’ primary goal is to gather relevant data by encouraging, facilitating, and guiding the respondents to provide unbiased and clear answers to necessary questions (Roulston, 2006, 515-534). A highly structured interview is organized according to themes or topics and presents the respondent with a set of specific questions the interviewer reads aloud. The answer categories are also structured, so that the respondent must choose from a set of pre-designated or forced-choice response categories. The highly structured interviews are not suitable in this care due to questionable ability of the subjects to answer such questions (Westcott, 1992, 519-533). Given the topic and its nature and the disabilities of the prospective subjects, the approach of unstructured interview is best suited for studying highly sensitive or unexplored subjects in depth. Rather than offering the respondent forced-choice response categories, the unstructured interview presents open-ended questions that may be answered in any way (Poindexter, 2003, 383-409). However, this needs subjective responsiveness and skills of the interviewer and more resources such as content analysis to culminate into a finding which is a time-consuming affair (Shaw and Norton, 2008, 953-970). McGlaughlin et al. in their article highlights the housing needs for adults with learning disabilities (McGlaughlin, Gorfin with Saul, 2004, 709-726). Apart from the extensive influence of the principles of normalisation or social role valorisation, other themes are identifiable in the thinking behind community care developments. One important issue concerns the identity, aspirations and true needs of service users (Gale, 1998, 110-115). Much more respect has, belatedly, come to be given to people’s cultural, ethnic, gender and personal identity. It has also been acknowledged that people aspire to relationships rather than simply physical settings and conditions (Smiley, 2005, 214-222). Social role valorisation is fundamentally about improving the relationships of people with others in society, to counteract processes of social devaluation (King et al., 2006, 902-925). This task is likely to require commitment to the ideal of inclusive communities, flexibility and lateral thinking, and work to develop ‘competent communities.’ The ideal has become clearer: it is for the equal acceptance and valuing of people in competent, caring, mutually beneficial communities, based on respect for the personal identity and aspirations of people while acknowledging their vulnerability. It is to be achieved through flexible, creative services that support good relationships for people in society (McConkey and Mezza, 2001, 309-318). Now there are many options other than residential care available for this powerless and oppressed population. These are group home living, supported living projects, adult placements, low support networks, support within family home, and home ownerships (Rourke et al., 2004, 12-29). There is considerable focus in promoting independence, but the reality is that the provisions for the elderly with learning disabilities are still limited and the voice of the users frequently is unheeded (Slevin et al., 2007, 329-342). This as suggested by the researchers are due to the barriers and structural problems that limit the opportunities of people with learning disabilities to live in their own homes (Thompson, 2002, 115-122). Researches into these issues are of limited validity due to two reasons. These mainly contain views of the researchers or professionals and opinions of family carers and the tendency of these people with learning disabilities to say yes irrespective of the question asked (Treloar, 1999, 358-364). Attention to formatting of the questions with accompanying pictures may increase the validity. This tendency has been more prominent when the answers are not known; questions are complex, but more related to their lack of control in their lives than to their disabilities. As people with intellectual disabilities age, support from family tends to decline and formal services play a more significant role in their lives than is the case for older people in general (Barton, 1998, 79-88). In the areas of accommodation, lifestyle planning and support, maintenance of relationships with family and friends and health promotion (Oakes, 2000, 7-26), older people with intellectual disability are particularly dependent on support from formal services (Keene and Li, 2005, 1145-1161). Not surprisingly, formal service provision organizations have a significant influence on their lives. People with learning disabilities are more prone to a wide range of additional physical and mental health problems than the general population. There are barriers and problems they face accessing full range of healthcare services (Sowney and Barr, 2004, 247-265). There is not much of evidence base and lack of research in this area. These barriers are "problems with communication, inadequate facilities, rigid procedures and lack of appropriate interpersonal skills among mainstream health care professionals in caring for these patients." Moreover, even in the area of primary healthcare provision, research has shown that even the GPs do not know much about the primary care needs of this population, and health promotion activities with this population is ignored. The reasons are "less frequent surgery attendance of people with learning disabilities, people with learning disabilities do not mention their symptoms to carers/GPs, lack of interest/knowledge of GPs, and a difficulty for GPs in reaching a diagnosis" (Stanley, 1998, 23-30). It is well known that ageing is associated with some degree of dementia. Over the top of learning disability, the dementia also sets in as the age increases in this population. It is difficult to make an accurate diagnosis of dementia in these subjects (Kirk, Hick, and Laraway, 2006, 257-264). The difficulty in diagnosis also leads to a problem of mislabeling these people as dementic, since quite often it has been found that thoughts and opinions of the carer differ from those of the patients. Use of cognitive tests have been suggested to solve these issues since many a cases paid workers may not have access to detailed information regarding the patients. All that required is careful development of relationship with these people so their thoughts are revealed (Mundt et al., 2002, 461-464). Methodology To address all these issues, a research design is important. The sample can be collected from the residential care facilities and from the records they maintain. The interview can be based on an instrument selected from this purpose. Two instruments will be used, one for health care needs, one for social care needs. The mental health needs can be assessed through a valid instrument (Parley, 2001, 299-308). These interviews will be semi structured with allowance of the participants to speak whatever they want to on the interview question, and then a content analysis and relevance assay will be made to analyse the information. The sample size should be large across facilities to give validity, reliability, and generalization to the information gathered. Conclusion It is expected that this study will allow the needs assessment of the elderly population with learning disabilities, and the analyses of the data will provide clues to their needs and views about existing services. Due to evident reasons explained earlier, through this qualitative design, the needs assessment may provide a guide to the gaps in social and healthcare needs of the population specially in terms of residential needs, varied healthcare needs, mental health needs as related to dementia. These may help the social care work in practice who can facilitate resolution of their needs on a person-centred basis through an interagency collaboration. Reference List Abbott, S. and Mcconkey, R., (2006). The barriers to social inclusion as perceived by people with intellectual disabilities. Journal of Intellectual Disabilities; 10: 275 - 287. Alborz, A., McNally, R., and Glendinning, C., (2005). 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