Valuing People: Policy and Practice - Essay Example

 Introduction In the past, people with learning disabilities lacked opportunities to be treated like the others. They were usually discriminated. Their rights were abridged, their choice taken away from them, they had no independence to speak of, and they were excluded most of the time. While we cannot directly say these have been eradicated totally, the government of the United Kingdom introduced the White Paper because it wanted to change things. It showed how the government wanted to work with people with learning disabilities, their carers and local services catering to their needs to make life better. For these people, to be able to make choices and have control over their lives cannot be more emphasized. Valuing people has since then been the guiding post of service providers, carers, and the government itself since 2001 when it came to people with learning disabilities. The White Paper, said to be the first of its type in a generation, expressed government’s will in looking for new ways of implementing it. But then such implementation was found to be more difficult than its creation. Hoping to provide a sense of direction and vision for all concerned, the government hopes the speed of local processes will hasten as would other expected changes. This paper looks into Valuing People as policy and describes what has been practiced. Particularly, it looks into the aims of the policy, its origins and links to other policies and legislation, and its philosophical basis. It ends with six cases where my reflections about things that are happening are also registered - Valuing People having impacted upon me a heightened consciousness about how things should properly be in my work. Valuing People: policy and its aims Learning disability has to be understood by anyone wanting to be true to the tenets of the UK white paper, Valuing People.1 Learning disability, the object to be tackled, is said to include “the presence of a significantly reduced ability to understand new or complex information, to learn new skills with a reduced ability to cope independently, which started before adulthood, with a lasting effect on development”.2 There is lack of official data regarding the number of people in the UK who have learning disabilities.3 Reviews of prominent studies in Europe, North America and Australia that have screened whole populations, however, have found that 6 people per 1,000 of the overall population have learning disability, mild or severe.4 The white paper, Valuing People, is based on four key principles: civil rights, independence, choice and inclusion, and sets out an ambitious and challenging programme of action for improving services,5 and working in partnership with people with learning disabilities on a national level is its vision. 6 Valuing People has cross-Government backing and its proposals are intended to result in improvements in education, social services, health, employment, housing and support for people with learning disabilities and their families and carers.7 Recent laws such as the Disability Discrimination Act and the Human Rights Act are suggested to be able to help these people get what they need if they are not allowed these choices, or if people put barriers in their way.8 Already, the government had created a new National Learning Disability Task Force including people.9 The Service Users Advisory Group since then had changed to become the new National Forum for People with Learning Disabilities. It is including more people from all over England and has since then helped the Task Force and the Government to look at services and policies for people with learning disabilities.10 Valuing People describes itself as a new strategy for learning disability for the 21st Century. It was presented to Parliament by the Secretary of State for Health on March 2001. Including relevant appendix, it is a 149-page three-part document of ten chapters about the status of learning disability, the problems and challenges, the new vision for people with learning disabilities.11 Valuing People is based on the premise that people with learning disabilities are people first, and the focus throughout is on what people can do, with support where necessary, rather than on what they cannot do12 Policy aims. The policy aims to ensure that disabled people gain maximum life chance benefits from educational opportunities, health and social care while living with their families or in other appropriate settings. It wants to ensure continuity of care and support and equality of opportunity for as many learning-disabled people as possible in education, training, or employment.13 Through this policy also, the Government aims to enable people with learning disabilities to lead full and purposeful lives in their communities and develop a range of activities including leisure interests, friendships and relationships.14 But even as this happens, a group campaigning for a charter called Millfields Charter wanted it to be signed. In the care of psychiatric patients, the group wanted “a stop to methods using restraint in the prone / face down position which are dangerous to physical health and are degrading; mechanical restraints, which tie, strap or in other ways prevent movement; methods which cause pain and involve locks to joints; methods which do not involve user or advocate choice; and methods which cause fear and increase anxiety.”15 Latest events. Relevant to the white paper on Valuing People, latest events reveal a critical public watchful of legislations on persons with learning disabilities. In the second semester of last year, The Guardian, for example noted that sending looked-after juveniles to care homes by the seaside might sound like a good idea, but said that a new report from Kent warns that 'dumping' young people far from their own communities is “creating an explosive mixture that could lead to tragedy.”16 It was also about this time that the Mental Health Foundation had responded to the National Institute for Clinical Excellence (NICE) on consultation on Social Value Judgements.  In its response, the charity warned NICE that the emphasis placed on economic factors in the guidelines will increase discrimination against these kinds of individuals: 1) older people, 2) people with learning disabilities, 3) people with mental health problems, and 4) those who self-harm.17 A ticklish event towards the end of the year 2005 was the creation of the first national ‘tsar’ role for a person with learning difficulties. The paid position is said to expand on the current responsibilities of the co-chair of the Learning Disability Taskforce, a government advisory body. 18 After a week, however, Health chiefs were said to have sparked controversy by announcing the post of “learning disabilities tsar” — who MUST have learning disabilities. Campaigners were angry and branded it a politically correct “gimmick” that will be a waste of taxpayers’ money.19 New rights today extend legal protection to thousands more people against discrimination effectively from the point they are diagnosed with cancer, multiple sclerosis or even HIV.20 Valuing People: origins and links The United Kingdom government had come to a decision to address problems facing learning disability services.21 These were broadly defined as social exclusion problems, inconsistency in service provision, and finally, (mis)management of services. Despite the efforts of some highly committed staff, public services have failed to make consistent progress. 22 There are several issues that have to be addressed. For example, higher cost of education as a result of the child’s disability coupled with diminished employment prospects; inadequate housing needs; non-coordinated approach to support by health, education and social services; significant unmet need for short breaks; young disabled teens leave school early; carers feel undervalued by public services, or lack the right information to meet caring responsibilities.23 Furthermore, advocacy services are inconsistent, direct payments to clients have been slow to take off, substantial health care needs often go unmet and clients can die prematurely.24 Moreover, some large day centres offer little more than warehousing. 25 Valuing People is grounded in legislations that confer rights on all citizens including people with learning disabilities, namely: the Human Rights Act 1998, the Disability Discrimination Act 1995, the Race Relations Act 1976, the Race Relations (Amendment) Act 2000, the Sex Discrimination Act 1975, and the UN Convention on the Rights of the Child adopted in the UK in January 1992, and now the Mental Capacity Act of 2005 expected to be implemented by April 2007. 26 The Human Rights Act 1998. This act that came into full force in October 2000, is a key part of the Government’s programme that modernises relationships between people, and between people and the State, and embeds in a new way, values of fairness, respect for human dignity and inclusiveness in the heart of public services. It makes it unlawful for any public authority to act in a way which is incompatible with a Convention right. 27 The Disability Discrimination Act (DDA), 1995. This was passed in 1995 to end the discrimination that many disabled people face. It protects disabled people in employment, access to goods, facilities and services; the management, buying or renting of land or property; and education. 28 Carers and Disabled Children Act 2000. This Act examines the needs and rights of carers who look after those who are in need of additional care, assistance or support associated with disability. 29 Mental Capacity Act 2005. This Act aims to empower people who lack capacity to make decisions, put them at the heart of the decision-making process, and provide clear safeguards for them and their families. It establishes important principles for professionals who work with this client group.30 The philosophical basis of Valuing People Many quarters have been expressing in many forms to government what they thought should be done. For example, all disabled people, including those with learning disabilities, should be enabled to gain full access to their legal rights.31 More so, people who are vulnerable to exploitation have to be protected in Law.32 Reports also claim that young citizens craved to be treated more like brothers and sisters, wanted to do the things other children do, and be given the chance to be independent, get a job and have a home. 33 Research further reveals that parents of disabled children would like key workers to help coordinate services, and that impairments be identified early and given early intervention. They also wanted simple accessible information about available services, and greater access to family support, some short breaks and some government support.34 These are reasons more than enough for the UK government to come up with Valuing People. In response, many organisations got involved in the venture, prominent of which are the Mental Health Foundation, the Foundation for People with Learning Disabilities, and the National Institute for Health and Clinical Excellence. (NICE). As they interacted to fulfil their objectives, however, they ironically cross ways in the manner they interpreted their roles – at times discriminating with clients. The Social Value Judgements created in April 2005 can therefore be said to be a test case for these support agencies. Social Value Judgements: There have been debates for instance on interpretations of these government guidelines, hence the constant exchange of notes by various agencies. The foundations therefore urged NICE to be very explicit in its guidelines -1) that decisions about the provision of treatment should not be made based upon general assumptions or beliefs about self-inflicted causes of the condition; and 2) that the guidelines should explicitly cite self-harm as examples where discrimination is unacceptable.35 Among other concerns, the Foundation for People with Learning Disabilities had registered its vehemence that the NICE guidance does “not support the use of interventions - for which evidence of clinical effectiveness is either absent or too weak for reasonable conclusions to be reached.”36 The Foundation for People with Learning Disabilities noted that often the stigma and discrimination experienced by older people, people with learning disabilities, and people with mental health problems often manifests itself in a view that people in these groups are a financial “burden” on society.37 In fact, the Government’s Social Exclusion Unit’s report about mental health found that stigma and discrimination was considered to be the greatest barrier to social inclusion by people with mental health problems.38 Often, young people experience prejudice and discrimination from health care practitioners if they present themselves for treatment having self harmed,39 being “not worth treating because you did it to yourself.” 40 Men are not uniform. As part of methodology, use of value judgments requires that one understand different types of value judgments that play distinctive roles in the life of reflective, social beings.41 Things are not fixed and absolute; therefore people have to revise their thinking if necessary as men are not uniform in all aspects. As John Dewey’s moral philosophy suggests, “Value judgments are [merely] tools… We test our value judgments by putting them into practice and seeing whether the results are satisfactory — whether they solve the problems they were designed to solve, whether we find their consequences acceptable. 42 Valuing People: Impact on my work 43 Reflections about my work are embedded in the cases that follow, as an impact of Valuing People. All these cases address rights, independence, choice, and inclusion which are the four principles spelled out in Valuing People, although they overlap in many ways. Somehow, these things overlap as you cannot really separate them into boundaries. One principle often affects the other. Case 1: Mrs. Johnson’s empty chair. One day, Mrs. Johnson went downstairs to the dining room for dinner and decided to sit on another table - not the one allocated to her. She sat in one of the tables I was supposed to serve. There was a big fuss to want to take Mrs. Johnson back to her normal sitting place. She refused and the staff member working there decided that she was not going to serve Mrs. Johnson and she didn’t. At first, I thought she was just saying that, but that was not the case. Mrs. Johnson was not to be given any food unless she returned to her everyday sitting place. I was new to this job and I was very confused as to what to do or say as a result of that. Should I say something? Looking back, anybody can sit anywhere they like in the dining room and eat. It seemed to me that while it may have been a good idea, not everyone liked it! There was plenty of space, and there were many tables anyway. I was told by one carer that I should not serve Mrs. Johnson until she goes back to her chair. My thoughts were that it was ridiculous, and so I asked Mrs. Johnson what she would like on the menu and I served her. Obviously that didn’t make me popular in that home. By now, I could maintain I was right for allowing her, her choice, and I wouldn’t care. Case 2: Mr. Smith and his (lost) right. Mr. Smith had very limited physical ability as he could not wash or dress himself or walk. He used a wheelchair and needed someone to push him around. He was able to eat slowly but within a very short time he lost that too. Usually an assessment is done to know the needs of residents and a review is usually in place in about six months. Mr. Smith became unable to pick up the knife and fork and eat fast. He started eating with his hands and most of the time was the last one in the dining room. Several times, Mr. Smith was being hurried up and having his food taken away because he was eating with his fingers!! No one showed any concern as to his deteriorating condition. During handover, a member of the staff said Mr. Smith has become very lazy to pick up his knife and fork and wants to be fed and so we should not do those things for him. I wondered why it was such a big deal that Mr. Smith was eating with his fingers. To me, it was because this thing was stressed many times during the handover. I said, isn’t it better that at least he is eating although he eats with his fingers? And shouldn’t he have another review to assess his needs as obviously his condition has changed? No, he is just being lazy; that’s all that was said by the staff member. I took compassionate leave for two weeks from work because of a family problem and on coming back I found out that Mr. Smith had died! His family filed a complaint against the home, saying that Mr. Smith was abused. The manager was suspended but was later brought back to work as she was cleared in the investigation. The family was right; Mr. Smith was abused, as his rights were taken. He came to live there paying a lot of money and we just could not provide the services we were purposely there to provide. It was very sad for me because I quietly liked Mr. Smith. I meant people were not very kind to him. The first time I went to his room to assist him with his personal care (I was shadowing a permanent staff), I felt very bad as to the way that staff member was talking over his shoulder like Mr. Smith didn’t exist. He meant well to show me what to do, meaning how to support Mr. Smith, but Mr. Smith was there and this carer who I shall call C because he was cruel just talked and talked, this is how you do this, etcetera. C was loud and was also not very gentle, and when he was turning Mr. Smith on one side he just shoved him off!! I looked at Mr. Smith and he was looking at me helplessly!! I asked C whether Mr. Smith was in any pain and he said no, why? I said I think he is because when you were turning him he was showing signs of distress. Many times Mr. Smith rang the bell indicating that he wanted to use the toilet but no one would immediately get up and attend to him. In that home bells used to go like mad. In a staff meeting we were told that all the bells now are connected to the ground floor and management will be monitoring how long the bells rang before it was answered. I thought: cool, that should do it! But only to find out that my colleagues were going there and switching off the bells when they ring or sometimes even unplugging them! Many staff members do these things. Once I asked another staff member who was not very kind and also was old and wrinkled. Had she ever thought about living in a nursing home when she gets older? She said yes, I will soon retire and can easily see my son starting to look for a home for me. I asked her how she would like to find this home she will be living in. Ooh, I would like to go up north, she said. She knew they have much better homes over there and staff members are not as cruel as in the south of England! Case 3: Mr. Mounsey and his bells. Mr. Mounsey was a writer and I had the privilege of reading his work while we were there. He liked to talk about his younger days when he travelled to many places around the world. He even got the chance to interview Idi Amin during his dictatorship regime, and he was able to write a book about that. Mr. Mounsey could wash, dress and eat by himself with little support from the carers. He liked watching films and he had a big collection in his room. He was also a late sleeper and that used to piss off night staff members as they wanted to make sure everyone was on bed and lights were off before they go to sleep themselves! These staff members were not allowed to sleep on duty, but they did. Several times, Mr. Mounsey would ring the bell and ask for water, to go to the toilet or to have his films changed. Because he could talk, the staff members could not just ignore him or switch his lights off but they would complain so much that he doesn’t want to sleep early. They would go to his room and say, “Hi, Mr. Mounsey, we are very busy at the moment with the other residents and will be right back with you as soon as we finish.” In one of the staff and residents’ meeting, Mr. Mounsey told of how he rings the bell and no one attends to him and how long he has to wait from when he is told to wait and someone will be with him shortly. He was told the matter will be investigated but up to the time I left employment, I didn’t see much change. Getting into this kind of work is not hard. All you need is a clean criminal record. Education level doesn’t matter. Most of the carers I work with are illiterate, from having very bad handwriting to actually not being able to even hold a conversation. Most of them seem to think people like me are wasting our time going back to school. I still think there should be proper courses and training before people join this work. At the moment anyone can join in and do an NVQ. NVQ or National Vocational Qualifications are work-related, competence-based qualifications reflecting the skills and knowledge needed to do a job effectively. Within reason, NVQs do not have to be completed in a specified amount of time. They can be taken by full-time employees or by school and college students with a work placement or part-time job that enables them to develop the appropriate skills. There are no age limits and no special entry requirements. What happens in care work is that lots of people get their work done by other people and that's a disadvantage because the purpose of NVQ is to teach them about different aspects of care they miss out.  For example, X is a support worker and she is doing an NVQ. When she goes home her children or husband does the questions for her and she can just show that to her NVQ assessor. Case 4: Mother Pat’s complaint. Pat decided to visit her son and unexpectedly found him sitting on the commode. Carers were at the back and when Pat rang the bell, one of the clients who was able went and opened the door. Pat came in and went to her son’s room straightaway and found Michael on the commode. She went to sit in the lounge and was there for quite a while. She didn’t see anybody around so she decided to go on the back where she found the carers having coffee and cigarettes. There were five gentlemen clients in that house and this required five staff members who were all present then. They were shocked to see Pat there and all quickly went in the house. She demanded to know how long the son had been there and was told Michael was just put on before she came in. Pat answered that she had been in the house for 45 minutes and Michael hadn’t been attended to after he was put on the commode. She reported this to the area manager and the area manager investigated. Pat also called social services and reported neglect and abuse. As a result, all the five staff members were suspended and to date we didn’t come to know the outcome. Many times parents complain because they come and see bruises and other signs of neglect or they are just not happy with the level of care their people receive. I have seen only one case where a member of the staff was expelled from work but she was free to go and work somewhere else! In these homes, it is always the small things that go wrong. But these small things are important and they matter. Case 5: Shahid, the Muslim. Shahid is a Muslim boy of Pakistan origin. Because of his religion he has special dietary requirements. He eats only halal food. There is a short break care where clients of one of the organizations in this county are sent to give time off to parents and carers. Shahid’s needs were assessed of course and it was determined quite early on that he should eat only halal meat and vegetarian meals during his stay. Shahid went there to stay for three days. One shopping day, groceries were bought but unfortunately they forgot to buy halal meat for Shahid. By the time our shift came, they couldn’t find the meat, so they said Shahid can have vegetables only with mashed potatoes. People like Shahid pay £120.00 a night to stay there and yet he is to be left to eat vegetables and mashed potatoes for his dinner! If I went for a holiday I knew exactly what to expect and what I wanted. There is a convenience shop nearby where Ben (one of the staff members) suggested that we go and buy him some vegetarian sausages or meat and cook for him. The others, however, replied that Shahid wouldn’t die if he didn’t have meat for a day! Despite them, Ben went to the shop and bought meat and free vegetarian sausages; and Shahid enjoyed his dinner. Suppose Ben wasn’t there? Case 6: Reporting Jim. Jim used to be a chef and he cooked a very delectable dinner that Sunday: roast chicken, potatoes and vegetables. We all ate and after the pudding, he took a drink for himself and went to the lounge, sat down and watched football. I went to the kitchen, too, and put the kettle on and came back to ask clients who would like what, i.e. coffee, tea, or cold drinks. Jim heard me and said I can have a drink if I like but “don’t worry about them.” I asked him, didn’t they want drinks too? And everybody said, I want his; I want that. So I went to the kitchen and made drinks. Jim became very angry with me and said, I don’t work there permanently and so I don’t really know what they need. I answered, yes, that’s true but I know they would like a drink because I have done some shifts before and saw that they always have a drink after dinner. He said a mouthful against me and I was very upset. I couldn’t understand why, because the drinks were there, they belong to them and we were in their home. We were just there to help the clients meet their needs and nothing else. Also, he had a drink himself in these poor people’s home! I phoned my Agency and reported him, who in turn reported it back to the home manager. He got suspended after the investigation. Conclusion Valuing people as a policy is good in so far as its aims are concerned. Carrying out the aims are however different. Where the four principles of rights, independence, choice, and inclusion as envisioned by the policy are stolen from the clients, the aims cannot be said to have been fulfilled. There is still a need to closely monitor the implementation of the policy. The services of care, education, vacation, voting rights, residence, justice, and the like, have to be delivered properly to the clients. Otherwise, what may obtain are conditions supporting only those who make a living out of these services, rather than what had been intended. No matter how sincere the government is, if any sector does not cooperate, the aims of this policy may not be achieved. In terms of monitoring, therefore, it should be the training of carers that should closely be guarded. To encourage this, the policy should be broadened to include proper accreditation – of both carers and carer services. The six cases happened not only due to unsatisfactory work ethic but due to incompetence. It is largely because majority of carers do not have avenues to see themselves clearly as they work - unless someone tells them to their face. Their training, if they ever had, lacked feeling, and the nuances of really caring, valuing people. The bottom line is – they should reach a certain level of education - enough to understand the needs of people with learning disabilities, and again, such carer’s course should be accredited - so that not everyone who needs a job becomes a carer. Endnotes 1 ‘Valuing People: A New Strategy for Learning Disability for the 21st Century,’ Presented to Parliament by the Secretary of State for Health by Command of Her Majesty, learningdisabilitiesuk.org, Mar 2001. 23 Jan 2006, Available at: http://www.learningdisabilitiesuk.org.uk/sitedoc/5086.pdf 2 ‘Learning disabilities white paper,’ www.dh.gov.uk, 24 Jan 2006, Available at: http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/LearningDisabilities/LearningDisabilityPublications/fs/en?CONTENT_ID=4032080&chk=w%2Bvo48 3 ‘Statistics on learning disability,’ learningdisabilities.org.uk>statistics, 24 Jan 2006, Available at: http://www.learningdisabilities.org.uk/page.cfm?pagecode=ISBISTMT. [The information in this factsheet is taken from a variety of sources, including Fundamental Facts: All the Latest Facts and Figures on Learning Disabilities. Foundation for People with Learning Disabilities, 2000. It was last updated on 10 Jun 2004]. 4 Ibid. 5 “What is Valuing People?” Care Services Improvement Partnership. & DOH. 5 Apr 2004. 25 Jan 2006. Available at: http://www.valuingpeople.gov.uk/ValuingPeople.htm 6 Ibid. 7 Ibid. 8 ‘Introduction: Nothing about us,’ [New plans of the government for improving lives of people with learning difficulties], 24 Jan 2006, Available at: http://www.publications.doh.gov.uk/learningdisabilities/access/intro3.htm 9 Department of Health, 2001, ‘National Service Framework for Older People,’ Cited in Foundation for People with Learning Disabilities (2005) London: Mental Health Foundation. 10 Ibid. 11 ‘Learning disabilities white paper,’ www.dh.gov.uk, 24 Jan 2006, Available at: http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/LearningDisabilities/LearningDisabilityPublications/fs/en?CONTENT_ID=4032080&chk=w%2Bvo48 12 Ibid. 13 Ibid. 14 Ibid. 15 “The millfields charter against abusive practice.” Millfieldscharter.com. 25 Jan 2005. http://millfieldscharter.com/charter.aspx 16 ‘Latest news on policies and legislation affecting people with learning disabilities,’ Disabilities learningdisabilities.org.uk > profile news, Last updated 05 Dec 2005, 24 Jan 2006, Available at: http://www.learningdisabilities.org.uk/profilenews.cfm?areacode=ld_policy_legislation_news&pagecode=PSLGLN 17 Ibid. 18 Ibid. 19 The Sun, 28/11/2005, cited in learningdisabilities.org.uk > profile news 20 Office for Disability Issues, 05/12/2005, cited in learningdisabilities.org.uk > profile news). 21 ‘Learning disabilities white paper,’ www.dh.gov.uk 22 Ibid. 23 ‘Policy and legislation affecting people with learning disabilities,’ 24 Jan 2006, Available at: http://www.learningdisabilities.org.uk/page.cfm?pagecode=PSLGLG 24 Ibid. 25 Ibid. 26 Winterton, R, (Minister of State, heal Services), ‘Consultation of the Independent Mental Capacity Advocate service,’ DH/Older People and Disability, CSOP&D, 5 Jul 2005, 24 Jan 2006, Available at: http://www.dh.gov.uk/assetRoot/04/11/52/25/04115225.pdf. 27 The Human Rights Act 1998, www.dh.gov.uk 28 The Disability Discrimination Act, 1995, drc-gb.org 29 Carers and disabled children act 2000, omni.ac.uk 30 Winterton, 2005 31 Disability Rights Commission established in April 2000 32 Sex Offences Review, Setting the Boundaries 33 Main messages coming out of consultation with disabled children, cited in Winterton (2005). 34 ‘Valuing People,’ learningdisabilitiesuk.org, 35 The Mental Health Foundation & Foundation for People with Learning Disabilities ‘Response to NICE Consultation on social value judgments,’ learningdisabilities.org.uk. > response, Apr 2005, 24 Jan 2006, Available at: http://www.learningdisabilities.org.uk/html/content/NICE_social_values.pdf 36 Recommendation 3, learningdisabilities.org.uk > response 37 learningdisabilities.org.uk > response 38 Social Exclusion Unit, 2004 39 Comment of a student as reported in: Foundation for people with learning disabilities. learningdisabilities.org.uk, ‘Learning Disability Training,’ Last updated 9 Jan 2004, 23 Jan 2006, Available at: http://www.learningdisabilities.org.uk/page.cfm?pagecode=OWSVTR 40 learningdisabilities.org.uk >Learning Disability Training 41 ‘Dewey's Moral Philosophy,’ plato.stanford.edu, 23 Jan 2006, Available at: http://plato.stanford.edu/entries/dewey-moral/ 42 Ibid. 43 I have been in this work since 2002 and I had cared for both young and elderly people. 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