Ethical implication in relation to policy implementation
The Department of Health (2001) has implemented key policy known as Valuing People (2001) to enable young people with learning difficulties to be in control over their lives. The policy states people will be able to have control over their lives through use of advocacy and person centred transition planning. Person centred transition planning should recognise peoples desires, aspiration and respect the individuals choices ( DoH of Health, 2001). However, some issues have risen as result of policy implantation in the areas of transition, these issues are discusses below .
Valuing people (2001) document highlights the need to make transition process a positive experience and every local agency should have a multi agency transition strategy (DoH, 2001). Local governments have devised person centred transition strategy for young people with learning difficulties as response to Valuing People (2001) policies( DoH, 2001). The Halton councils Local transition strategies point out that transition plan are to be developed in a person centred way, with young person being central to the process and in control (Halton Borough Council, 2007). However, in reality studies and literature reviews have shown that in practice person centred planning doesn’t always put the person at the centre as instructed by Valuing People (2001) strategy (Mansell and Beadle-Brown, 2004). Choices and control seem to be the central part of transition policy in valuing people, but in reality I believe policies and strategies are not adequately providing young people with opportunities to make choices for their future.
Making choices is often taken for granted by non-disabled people, choices are made all the time, there are less important choices such as the clothes one should wear and there are far more important choices like where one lives and what job or level of education one takes on (Edge, 2001). Choice is a basic human right which provides individuals with self-determination and empowerment, choice can also open up new opportunities and give people opportunities to be in control of their lives and be more independent (Swain et al, 2003). However, Antaki et al (2008) have highlighted the fact that for people with learning difficulties making choices is not an easy option; they might even find it difficult to get the opportunities to make choices concerning their lives. Their opportunity to make choices can be limited because they might find it difficult to express their likes and dislikes through sound, behaviour and expression (Edge 2001). However in order to respect the person right to choice, the way peoples express their preferences must be recognised and used as stepping point to allow them to express their choices ( Edge, 2001). I believe with appropriate support and opportunities young people with learning difficulties can be supported to make complex decisions and choices, such as whether they want to go college or attend day centres etc. However, Rights of children and young people in statutory decision and choice making is not often recognised by society and culture, therefore professionals and agencies are stepping upon uncharted territories in attempting to give a voice to young people ( Littlechild, 2000). In Uk the NHS and Community Care Act (1990) makes references about the need to inform, consult and Involve service users (DOH, 1990), However according to Edge (2001) people with learning difficulties generally have little or no say in services they receive. Although, Valuing People now (2009) recognises the importance of supporting people to make their own decisions and choices , and for those who are not able to make their own decision the Mental Capacity act (2005) provides a statutory framework for acting and making decisions on their behalf (DOH, 2009). However it is demonstrated within the literature that putting systems in place to allow and encourage choice and decision making may be easier said than done, but by listening and breaking barriers to communications empowering people to make choices can be done (Harris, 2003).
Valuing people (2001) strategy has stressed the importance of Direct Payment on the road to offering choice and control. Direct Payments was introduced in the Community Care (Direct Payments) Act 1996 to enable people to receive money to pay for their own support, for example the young person could use the money to engage in different range of activities when, where and how they want (Carmichael and Brown, 2002). Direct payment allows the person to be in control of their choices (Edge, 2001). However, from a parental point of view giving the financial freedom to an inexperienced young person can be worrying, parents may fear their “disabled” child might make unwise choices or perhaps be exploited ( Pascall and Hendey, 2004). But it ‘isn’t always possible to understand why the person has made the decision they have and people in general should not be expected to make perfect decision (Edge, 2001).
Further research has highlighted issues lack of accessible information and another issues was how direct payment would be managed by young people (Abbott et al, 2003). In my opinion these studies have highlighted central flaws in policies. Policies and initiatives are not very accessible nor are they user friendly, if a young person doesn’t understand what’s out there for them they cannot be empowered to make informed choices. Ethically speaking, I believe by not adapting to the person needs, policy makers and service providers are creating barriers and segregating young people with learning difficulties.
Choices can be made possible if transition plan implements multi-agency co-coordination approach, services can come together and offer range of opportunities the person can choose from (Cameron, 2001). Valuing people (2001) policy states multiagency working is a key to delivering a successful transition service to adult services (DoH, 2001). The Department of Health (2001) is a fanatic of multi-agencies working together, and when it comes to person centred Transitions it places high emphasise on multi-agency services cooperating together ( Sloper et al , 2010). Over the years there have been some significant issues around multi- agencies working together. the problems in provision of appropriate services to support transition and in achieving positive outcomes for young people have been acknowledged in government policy and are highlighted in Improving the Life Chances of Disabled People (2005), A Transition Guide for All Services (2007) and Transition: Moving on Well (2008), all of which promote the development of better coordination of services (Sloper et al, 2010). However, Sloper et al’s (2010) study found number of problems in achieving a coordinated approach to transition including lack of agency working; lack of holistic approach; lack of accessible information for young people and parents; insufficient attention to young people’s priorities; lack of appropriate services and provision to which young people can transfer to (Sloper et al 2010).
Although Sloper et al (2010) has raised some significant issues in their study, but their data collection method could be bias. The study collected data from parents and young people going through transition using qualitative interviews, people’s negative experience could have influenced how they felt about multi-agency services (Punch, 1998). Perhaps also if the researchers interviewed few multi-agency staff they could have understood why multi-agency services were unsuccessful during transition process.
Moreover, valuing people aims to provide holistic transition service through multi-agency partnerships ( DOH, 2001). And it seems authors like Ward et al (2003)) have acknowledged the importance of holistic person centred approach to transition planning which takes into account the “whole person”. However, research shows that current transition planning techniques are far from being holistic, the plan tend to focus on limited, short term goals and do not look at the person as a “whole” (Beresford, 2004). A holistic transition plan should include the young person previous dreams as well as their future goals. It is recommended that the understanding of the young person’s history and taking on a holistic prospectus should be an important base to person centred planning ( Clegg et al, 2001). Research shows that often professionals might see transition process as a fresh start and perhaps ignore the history of the person, this can be disempowering because often person’s past shapes the future, and it’s important to acknowledge this ( Clegg, et al, 2001).
Additionally, another ethical issue is caused by constant assessment and review, valuing people (2001) states that in order to provide tailored a care package people need to be assessed and reviewed to determine service level (DOH, 2001). In fact transition assessment and reviews can create feeling of segregation and highlight differences between young people with learning difficulties and non disabled peers. What’s more Flynn and Russell(2005) cited research by Russell (2003) who found that many young people with learning difficulties were aware of the constant reviews, assessments and target setting. in fact many felt transition support workers and families focused too much on what the person couldn’t do rather then what they could do (Flynn and Russell, 2005). In terms of learning disability literature, assessment and reviews can sometimes be Individual Model of disability led, this is due to high focus on the impairment of the person (Thomas, 2004).
However, in order cater for young person’s health, social, economical and emotional needs assessment need to be done. But a good assessment should not appear to be anything other than a support network, and should take ethical issues into consideration. For Young people with learning difficulties constantly being assessed can highlight differences in their experience of transition compared to non disabled peers, who are very rarely assessed, this can affect their self-esteem and self-worth negatively ( Valas, 1999) . Policies and legislations like Education and Skills Act (2008) and 139A assessment play major role in the lives of people with learning difficulties, by constantly highlighting need for change and re-assessment(DCSF, 2007). Unfortunately this an inevitable part of a disabled persons life, and only by doing these assessments and reviews can services truly provide a meaningful needs led lives ( clegg et al, 2010, Flynn and Rusell, 2005).
Moreover, reading literatures, policies and legislations on transitions has highlighted lack of research and policies on supporting young ethnic minorities with learning disabilities through transition. The valuing people paper (2001) doesn’t particularly make any clear suggestions nor does it mentions ways to deal with transition challenges for ethnic minorities, although it does in general make brief comments about meeting the needs of ethnic minorities, but not a lot of detail as to how these needs will be met, this in my opinion raises ethical concerns (DOH, 2001). A research conducted by Mac an Ghail and Haywood (2005) on young Bangladeshi peoples experience of transition highlighted major cultural differences in the definition of an adult status. Some authors have looked at what factors makes a successful transition and they have highlighted “independent living ” and employment to be the key to successful transition (Pascall and Hendey, 2004). However, Mac an Ghail and Haywood (2005) study has highlighted that for young Bangladeshi leaving home and starting work were not indication of making shift to adulthood. However for young white people leaving home and starting work was the main shift towards transition to adulthood. The study has highlighted some cultural issues that need to be addressed in policy making and implementation to cater for ethnic minorities with learning difficulties who are facing transition. However, the main reason why policies like valuing people white paper (2001) have proven to be unsuccessful could be due to lack of information on ethnic minorities ( Mac an Ghail and Haywood 2005)
Conclusion and recommendation
Reading and reviewing policies and literature on person centred transition planning shows there are areas of transition planning that needs specific attention and readjustment. Significant holistic planning needs to be allocated to support young people with learning difficulties through transition to adult service. To enhance the quality of life and better provision of services families and the young person with learning difficulties need to be fully involved from start to finish of transition planning (Carnaby et al 2003). Currently in Uk there’s are key policies and proposals such Valuing people(2001), Improving the Life Chances of Disabled People (2005), A Transition Guide for All Services (2007) and Transition: Moving on Well (2008), all of which promote the development of better transition services. However, since the election of new coalition government most policies and framework are under reviews and changes are being made, the coalition governments has told every disabled child matters national campaign (2010) that new changes to policies and legislation that will occur from April 2011(EDCM, 2010).
Therefore, currently there are great uncertainties about transition planning; in fact many services that are key players in transition planning are under threat and disappearing (Parliament, 2009) . what’s more Connexions service plays the most important role in guiding and overseeing the entire transition process (DOH,2001), Connexions services to a degree have removed barriers to learning and progression and have enabled young disabled people to make the transition into adulthood and working life (Cope, 2003). The new coalition government decision to cut grants from the Department for Education to local authorities will strike Connexions services at a high level (Parliament,2010) . As a result of this I believe young disabled people with learning difficulties will be worse affected. According to Cope (2003) reports of social care Inspections carried out in 2001 suggested that Connexions service were seen as having the potential to make a positive change to transition services ( Cope, 2003, Beresford, 2004). However, connexions services have been criticised By Grove and Giraud-Saunders’ (2003) research who identified difficulties in reference relation to providing connexions services to young people with learning difficulties, connexions advisors lacked in specific skills and expertise in the fields of learning difficulties. However, benefits of having connexion service do indeed outweigh the cost.
Another recommendation I would make is for policies to help build better relationship between schools and adult services, better co-coordination can lead to greater choices and flexibility specially for those with profound learning difficulties (Sloper et al , 2010, Caranby et al, 2003). Policies need to adapt to make the transition process feel natural, currently the adult social care outcome framework and every child matters framework (2004) is assisting services to make each step into adulthood natural and continuous as possible (Beresford, 2004). To provide a “natural” services I would recommend policies should aims for services to be more user lead, in another word services should grow with the individual and be flexible to meet their growing needs and desires. Services would need adapt policies and strategies provide the user with control and power (Edge, 2001).
References
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1. Abbott, D. and Heslop, P. (2009) Out of sight, out of mind? Transition for young disabled people in out-of-area residential schools and colleges. British Journal of Special Education, Vol 36 (1), PP. 45-55.
2. Abbott, D. Morris, J. and Ward, L. (2003). “The best place to be?” Policy, practice and the experiences of residential school placements for disabled children, Joseph Rowntree Foundation
3. Antaki, C., Finlay, W., Walton, C. And Pate, L (2008) Offering choices to people with intellectual disabilities: an interactional study. Journal of Intellectual Disability Research. Vol 52 (12) pp. 1165–1175
4. Beresford, B. (2004) On the road to nowhere? Young disabled people and transition, Child. Care, Health and Development, Vol 60 (6), PP. 581-87
5. Cameron, A. (2001) The Art of Partnership: A Practical Guide. Kidderminster: British Institute of Learning Disabilities
6. Carnaby, S., Lewis, P., Martin, D., Naylor, J., and Stewart, D. (2003) 'Participation in transition review meetings: a case study of young people with learning disabilities leaving a special school, British Journal of Special Education. Vol 30 (4), pp.187-193
7. Carmichael, A. and Brown, L. (2002) The Future Challenge for Direct Payments, Disability & Society, Vol 17 ( 7) pp. 797 — 808
8. Clegg, J., Murphy, E. and Almack, K.(2010) Transition: A Moment of change. In: Grant, G., Ramcharan, P., Flynn, M. and Richardson, M. (2nd Eds), Learning Disability: A life Cycle approach .Maidenhead: Open University Press
9. Clegg, J., Sheard, C., Cahill, J. and Osbeck, L. (2001) 'Severe intellectual disability and transition to adulthood'. British Journal of Medical Psychology. Vol 74 (2), pp.151-66.
10. Coles, J. (2001) The social modal of disability: what does it mean for practice in services for people with learning difficulties? Disability and Society, Vol16(4), PP.501-510.
11. Cope, C. (2003) Fulfilling Lives: Inspection of social care services for people with learning disabilities, London: Department of Health
12. Department for Children, Schools and Families.(2008) Transition: Moving on well . London: DCSF.
13. Department for Children, Schools and Families. (2007) A Transition Guide for All Services: key information for professionals about transition possibilities for disabled young people. London: DCSF.
14. Department for Children, Schools and Families (2007) Aiming high for young people: a ten year strategy forpositive activities. London: HM Treasury
15. Department of Health. (1996) Community Care (Direct Payments Act: Policy and Practice Guidance). London: Stationery Office
16. Department of Health. (2005) Mental Capacity Act. London: HMSO
17. Department for Education and Skills (2001) Special Educational Needs Code of Practice. London: Department for Education and Skills
18. Department for Children, Schools and Families.(2008) Transition: Moving on well . London: DCSF.
19. Department of Health (1990) NHS and Community Care Act. London: HMSO
20. Department of Health (2001) Valuing people: a new strategy for learning disability for the 21st century, Government White Paper. London: HMSO
21. Department of Health. (2009) Valuing people Now: a new three-year strategy for people with learning disabilities: London: HMSO
22. Dowling, S., Manthorpe ,J. and Cowley, S. (2007)Working on person-centred planning: From amber to green light? Journal of Intellectual Disabilities. Vol 11(1) PP.65-82
23. Edge, J.( 2001) who’s in control. London: Values into action
24. Every disabled child matters (2010) Disabled children: an agenda for the new Government. London: EDCM
25.Flynn, M. and Russell, P. (2005) Adolescents and young adults: Narrative accounts. In: Grant, G., Goward, P., Richardson, M. and Ramcharan, P. (1st Eds), Learning Disability: A life Cycle approach to valuing people .Maidenhead: Open University Press
26. Glendinning, C. (2002) Partnerships between health and social services: developing a framework for evaluation. Policy and Politics. Vol 30 (1), PP. 115–127
27. Grove, B. and Giraud-Saunders, A. (2003) Connecting with Connexions - the role of the personal adviser with young people with special educational and support needs. Support for Learning, Vol 18(1), PP.12-17.
28. Halton Borough Council (2008) Halton Multi Agency Transition Strategy for Young People with Complex Needs. Halton: Halton Borough Council
29. Harris, J. (2003) Time to make up your mind: why choosingis difficult. British Journal of Learning Disabilities. Vol 3 (1) PP. 3-8
30. Heal, L. W. (1999). Are normalization and social role valorization limited by competence? In: Flynn, R.J and Lemay, R. A (Eds.), A quarter-century of normalization and social role valorization: Evolution and impact . Ottawa: University of Ottawa Press
31. HM Government (2004) Every Child Matters: Change for children. London: Department for Education and Skills.
32. HMSO (1993) Education Act. London: HMSO
33. HMSO (2008)Education and Skills Act. London:HMSO
34. HMSO (1986) Disabled Person’s Act. London: HMSO
35. HM Treasury (2007) Aiming high for young people: A ten year strategy for positive activities. London: HM Treasury/Department for Children, Schools and Families
36. Leece, J. (2002) ‘Changing direction: direct payments and disabled children’, Representing Children, Vol 14(4). pp.215-225
37. Littlechild, B.(2000) Rights of children in statutory decision making. In: Payne, H. and littlechild, B.(Eds), Ethical Practice and the Abuse of Power in Social responsibilities: leave no stone unturned. London: Jessica Kingsley publishers
38. Mac an Ghaill, M. and Haywood, C. (2005) Young Bangladeshi People’s Experience of Transition toAdulthood, York: Joseph Rowntree Foundation
39. Mansell ,J. and Beadle-Brown, J.( 2004) Person-centred planning or person-centred action? Policy and practice in intellectual disability services. Journal of Applied Research in Intellectual Disabilities. Vol 17(1), PP. 1-9
40. Patton, G.C. and Viner ,R. (2007) Pubertal transitions in health. Lancet. Vol 369(9567) PP. 1130–1139
41. Parliament (2009) Memorandum submitted by the Special Educational Consortium and Transition Information Network. [online]available at: http://www.publications.parliament.uk/pa/cm200910/cmselect/cmchilsch/memo/youngpeo/me42.htm#_ftn16 [accessed 4/03/2010]
42. Pascall. G. and Hendey, N. (2004) Disability and Transition to Adulthood: The Politics of Parenting. Critical Social Policy, Vol 24(2), PP.165–186
43. Punch, K.(1998) Introduction to social research: Quantitative and Qualitative Approaches. London: Sage Publication
44. Prime Minister’s Strategy Unit .(2005) Improving the life chances of disabled people. Final Report January 2005. A joint report with Department for Work and Pensions, Department of Health, Department for Education and Skills, Office of the Deputy Prime Minister. London: HMSO.
45. Sloper, P., Beecham,J., Clarke. S., Franklin.A., Moran, N. And Cusworth,L. (2010) Models of Multi-agency Services for Transition to Adult Services for Disabled Young People and Those with Complex Health Needs: Impact and costs. York: Social Policy Research Unit, University of York
46. Stein, M. and Munro, E.R. (eds) (2008) Young People's Transitions from Care to Adulthood: International Research and Practice. London: Jessica Kingsley Publishers.
47. Swain, J., French, S. and Cameron, C. (2003) Controversial Issues In a Disabling Society. Buckingham: Open University Press.
48. Thomas, C. (2004) How is disability understood? An examination of sociological approaches. Disability and Society, Vol 19 (6), PP.569-583
49. Valas, H. (1999). Students with learning disabilities and low-achieving students: Peer acceptance, loneliness, self-esteem, and depression. Social Psychology of Education, Vol 3 (3), PP. 173–192.
50. Ward, L., Mallett, R., Heslop, P. and Simons, K. (2003) 'Transition planning: how well does it work for young people with learning disabilities and their families?', British Journal of Special Education, Vol 30 (3), pp. 132-137.
51. Wolfensberger, W. (1998) A Brief Introduction to Social Role Valorization: A higher-order concept for addressing the plight of societally devalued people, and for structuring human services. Syracuse, NY: Training Institute for Human Service Planning, Leadership & Change A gentry (Syracuse University).