The Impact of Living in a Long-stay Institution on Learning Difficulties - Research Paper Example

The Impact of Living in a Long-stay on Learning Difficulties” - Mabel Cooper’s Life Story - Table of Contents I. Summary of Mabel’s Story ……………………………………… 3 II. Introduction ……………………………………………………… 4 II. Quality Treatment Received by Patients with Learning Disabilities/Difficulties ………………………………... 6 III. The Need to Send off Institutionalised Patients to Community …. 7 IV. The Adverse Effects of Living in a Large Institution on Patients with Learning Difficulties ……………..……………. 8 V. Solutions to the Adverse Effects of Living in a Large Institution . 9 VI. People First: Self-Advocacy on Learning Difficulties ………….. 12 VII. Prevailing Policies and Legislation on Learning Difficulties …… 12 VIII. Conclusion ……………………………………………………… 15 References ……………………………………………………………… 16 - 18 Summary of Mabel’s Story Mabel Cooper lives most of her childhood and adolescence life in a children’s home and a long-stay hospital. As an individual, she did not have the comfort of living with her family. As a young person, she learned from her auntie Edith that her mother had passed away a long time ago. Edith told her that she never knew about her father except that her parents were married. Mabel has five cousins that live far away from her. From time to time, she would visit her auntie. Each time she visits her auntie, she has to be accompanied by a nurse named Mary Mason because she never had the chance to attend school all her life. Her illiteracy in reading and writing adds up in losing her self-confidence in going out of the institution alone. She is afraid of getting lost along the way. The only learning these people get from the institution is the skills on weaving baskets, cooking, doing the laundry, and other workshops. Since the institution takes in as much as 75 patients in each ward, the nurses have been too busy to teach them how to read and writer. In order to keep a tight monitoring over the huge population at the hospital, no patient is allowed to leave the vicinity without permission. Just like a prisoner, everyone has to comply with the schedule provided. Everything within the institution follows a daily routine. As a residence of the Hospital, she lives all her life following the house rules. For many years, Mabel made a few close friends inside the institution; namely: Gloria – a patient; Mary Mason and Eva – both Nurses. Most of her friends got married except for her. She never had any close male friend because of the strict separation of men and women inside the hospital. When Mabel finally left the hospital at the age of 31, she encountered a lot of difficulties coping with the life situation in the community. The first time she saw simple things such as children running around playing, escalators, riding the bus and train, and walking through the underground pass fascinated her a lot. Her life at Isabel’s is much better than living at the hospital. She had the opportunity to join the People First where she learns to be more self-confident. Since the place is much smaller than the hospital, Mabel was able to attend class with the help of her personal carer. She learns new things including reading and writing. Her carer also contributes a lot in her learning process. Introduction The story of Mabel Cooper is a good example of a patient with learning disabilities who grew up under the strict guidance and security of a children’s home and a long-stay hospital. Based on her life story, this paper will discuss about the role of parents’ in building the self-confidence of a child with learning disability as well as the effects of growing up in the absence of parents to provide them with the necessary tender loving care. The quality treatment that St. Lawrence hospital has provided to Mabel including the reasons behind the declining quality care will be elaborated in comparison with a reported journal coming from the British Medical Journal (BMJ). Another point of discussion will be the reasons why these long-term institutions are gradually sending off patients with learning disability to live in a community setting. Based on the personal experience of Mabel in the story, the solutions to the adverse effects of living in a large institution like the St. Lawrence hospital will be discussed. In line with this solution, this paper will highlight the importance of a social group such as the People First in the life of Mabel and other people with learning disability as well as the need to develop a self-advocacy, and how it was effective in mobilizing Mabel into successfully adapt with the life in the community. On the last part, the existing policies and legislation regarding people with learning disability will be enumerated. This will give us an insight on how the government is extending their support to these people as a way of valuing the human rights of each citizens of the country. The Role of Parents’ in Molding the Self-Confidence of a Child with Learning Disability It is inevitable that some parents hide their child’s disabilities in order to avoid being institutionalised. According to Oswin (1994), the main reason why parents would keep their children at home is because of the “threat of having their child put away into a big long-stay hospitals where they would be neglected.”1 Some parents also believed that asking for help is an admission of failure on their own failure.2 It is natural for parents to care for his/her child. These people are legally responsible in protecting their child against external harm. Since childhood, Mabel never had the opportunity to experience the warmth of having a family. Her mother was never with her to teach her how to read and write. She never had anyone to send her to school for a formal education. This is one of the major factors of Mabel’s lost of self-confidence in dealing with so many things on her own. Quality Treatment Received by Patients with Learning Disabilities/Difficulties Based on a BMJ report, a huge number of patients with learning disabilities are currently receiving a less quality treatment as compared with the general population.3 Specifically a Dutch teenage psychiatric patient with learning difficulties did not receive a suitable care for five weeks because of the institutions’ failure to arrange for proper care for the patient.4 It was noted that the failure could have been resulted from improper and lack of training among the doctors when it comes to managing patients with learning disabilities. Sometimes, this could be due to silent discrimination or simply a matter of having an understaffed institution. This issue was seen in the case of St. Lawrence Hospital wherein each ward is composed of 75 patients. The beds were small and close to one another. The little space provided to each patient make them sacrifice their own privacy. They were not even allowed to own anything or wear their own cloths and shoes. Privacy has really been a serious problem with living in an institution. In case Mabel gets upset or needs time to be alone, she would simply go around the field area for an hour or two and go back as soon as she feels better. Since there were too many patients residing the hospital, they were not allowed to cook in the ward kitchen. Generally, the food being served for the patients were vile. It was really horrible but they were left with no choice but to eat. The service that Mabel was getting from the St. Lawrence hospital was really unsatisfactory. The Need to Send off Institutionalised Patients to Community Based on the prediction of Roth (1973), the demand for institutional care-provision will continue to grow because of the increase in ageing population and people with learning difficulties.5 Due to the gradual increase in the demand for long-stay care, the limited space diminishing number of hospital beds available in such institution resulted to a change in the national policy. The market trend for long-stay care institutions changed over time.6 During the late 1970s, only 16% of the long-stay care institutions were established for profit purposes; 20% were managed by voluntary agencies; and 64% owned and operated by the local authorities. In 2005, as much as 76% of home care were aiming for profit; only 15% is owned by voluntary organization; and only 9% are operational under the supervision of the local government. Today, because of the high demand for such hospitals and home care facilities, the number of beds available in home care institutions has started to decline.7 The increase in demand for long-stay institutions has attracted a lot of business people in entering the health care industry. Since majority of the long-stay hospitals in the United Kingdom today are concerned with the ‘profit’, many times the quality of services rendered to the patients with learning disabilities is suffering. The nine percent of the long-term institutions that are officially run by the local authority is not enough to meet the needs of the less fortunate citizens of the United Kingdom. For this reason, a lot of used to be institutionalised patients have to be released from the hospitals and/or nursing homes. After many years of staying at the St. Lawrence hospital, Mabel was transferred to the ‘Whyteleafe House’ where the patients that were given the option to work outside stay. The main reason for the transfer is because the hospital has been over-crowded for many years and there were enough space available at the Whyteleafe House. The transfer of Mabel from the hospital to the house served as a training ground for her in terms of having the feeling of living in a less confined society. At first, the hospital would pick up Mabel from the Whyteleafe house to the hospital using the in-house car. She stays at the hospital during the daytime to work. After work, the service would drive her back to the Whyteleafe house where she stays at night. This became a daily routine until she decided to go out on her own. The Adverse Effects of Living in a Large Institution on Patients with Learning Difficulties The low quality services that St. Lawrence’s staff were providing the patients resulted to a lot of negative psychological effects such as fear of trying something new and lost of self-confidence. This effect was evident in the case of Mabel. She was never given the opportunity to learn how to read and write except on doing some household chores like doing the laundry, cooking, or sometimes weaving a basket. The lack of self-confidence becomes a hindrance for her to have a strong self-determination in going out of the secured area to live on her own. Living in a large institution such as the St. Lawrence hospital only contributed to Mabel’s inability to deal with other people through a group social interactions and gatherings. Since the institution staffs are very much occupied in performing their daily routine tasks, they no longer have the time to conduct a special event designed to give encouragement and entertainment for patients’ with learning disabilities. These special events are necessary when it comes to enhancing the personality of Mabel and the other patients as an individual. Most of the time, Mabel as well as other patients were locked-up within the premises of the institution to ensure their safety. This process does not have a long-term benefit to each patient especially once they decide to start living in the outside world. Since these patients were taught to live in an enclosed world, many of them fail to cope with the fast pacing life in the community once they leave the secured place. Mabel herself had a hard time dealing with the sudden changes in her surroundings. These people often experience a ‘culture-shock’ once they are already living in the community. It takes time for them to adjust with a different setting. Therefore, it is advisable for them to go attend continuously join existing social groups within their community. Solutions to the Adverse Effects of Living in a Large Institution Many institutionalised men and women requires a considerable health and social support once they have moved out of the institution into some degree of independent living within the community.8 This will help people with learning difficulties (that recently came out of the institution) in dealing with a wide range of emotional difficulties during the process of resettlement. In line with these changes, it is necessary for the health care professionals to make extra effort to involve the patient’s family, relatives, and/or friends regarding the decision-making process of choosing a future home for the patient as well as the necessary activities during the transition of moving from the institution into a community setting. This will help them understand the major changes that the patient is going through. Health care professionals should also advice the patient and his/her family, relatives, or friends to immediately coordinate with the nearest health and social care services, the voluntary and private sectors, or some specialist service providers such as People First in order to help the patients adjust mentally, psychologically, and socially within the community. It helps a lot for the patient to talk with other people who are experiencing what he/she is going through. This will encourage him/her to accept the environmental and social changes easily. So far, there is no specific policy on which agency is expected to take care of the needs of patients with learning disabilities.10 Patients with learning difficulties such as Mabel need special care and attention in order to learn. Being diagnosed with learning difficulties does not mean that these people are not capable of learning at all. However, it may take a longer time and effort for them to be able to learn new things including reading, writing and performing basic mathematics. For this reason, learning in a small group is more effective since each patient would need personal guidance during the process of learning. Mabel herself has found it to be more effective than studying in a large group of students with learning disabilities. On the other hand, depriving them from the necessity of education would only make things hard for them to cope with the society once they leave the institution. Over the years, a lot of research has been conducted on how well people with learning difficulties that left an institution ‘adapt’ to the life in a community. Based on one of the research studies that was conducted by ‘Disability and Society’, specifically the relationship of a child with her parents is one of the most important factors that affect an individual’s perception on the quality of living.9 Many times, parents who are overprotective could make the child grow with less confidence, inability to make their own decisions, and scared of living on their own. The same is true with people who grew up in the absence of their parents or living in a highly secured large institution. Over controlling institution staff also provides a little or no support in preparing and mobilizing the patient to be ready to face the real challenges in the outside world. Despite the fact that Mabel never lived with her parents, she experienced all her life being in an overly controlling institution. However, the tight control in a large institution is unavoidable because of the large population of patients that are confined within the institution. Other factors that could affect a person’s quality of living include: personal choice, privacy, and social life.11 Among these factors, personal choice is the most important in making a patient successful in ‘adapting’ with the community life. The whole process of Mabel’s decision to be successful in living within the community area started with her decision to live in a less secured place. When Mabel decided that she needs to have a little adventure in her life, she started to learn to become friendly with other people. This was the time she met Gloria’s friends and the rest of her acquaintances. Basically, people with learning difficulties were found successful in moving into community residences provided that these people are aspired to adapt with life in the community. Many times, their relationship with their family, friends, and staff are considered the central factor in achieving such aspiration. People First: Self-Advocacy on Learning Difficulties People First is a social institution that provides support for people with learning disabilities like Mabel. The mission of People First is to inspire all adults with learning difficulties throughout different state to become a confident self-advocate(s) through proper teaching and guidance.12 This group helped out Mabel restore her self-confidence by simply attending the trainings that were provided with regards to learning disability and self-advocacy skills that are necessary to empower and encourage her to learn. They also provide personal self-advice when necessary. The trusted people behind the People First were the main source of inspiration for Mabel in taking the necessary steps such as making her own decisions in order for her to gain control over her own life. Self-Advocacy is very important in the life of Mabel because it teaches her that as a human being, we all have the right to be treated with respect and dignity.13 In line with establishing her self-confidence, gradually she learns to adapt with the life in the community. In the absence of a special organization such as the People First, it would be much difficult for Mabel to meet people with the patience needed in dealing with her slow ability to learn as well as to understand their emotional and psychological state. Most of these psychological and emotional injuries are caused by their own physical and mental disabilities as well as the external sources like children bullying them, calling them with ‘foul’ names, or even shouting at them. Prevailing Policies and Legislation on Learning Difficulties Over the years, a lot of policies and legislations were implemented to give support to people with learning disabilities. In 2003, the UK Office of the Deputy Prime Minister (ODPM) commissioned a non-statutory good practice guide on accessible play space for disabled children.14 The recognition on disabled children to have the same entitlement with normal kids when it comes to the opportunity of playing has been approved recently. Most of the disabled children go to special schools away from their own neighbourhood. Therefore, the availability of having a local play space could provide them an opportunity to develop friendship with other local children. It is believed that allowing disabled children to experience being a part of the local community could give a sense and belonging and self worth which could later influence their attitudes towards participation and citizenship.15 The Human Rights Act of 1998 includes the prohibition of discrimination but not explicitly on the grounds of disability. For this reason, the most important legislation on the rights of people with learning difficulty would be the Disability Discrimination Act (DDA) of 1995. This is because DDA provides a clear definition of disability and measures that is necessary to prevent discrimination on the ground of disability in the areas of employment; access to goods, facilities, and services; and buying or renting land and/or property. Since 1996, DDA has made it unlawful for any service providers to treat and provide disabled people with unequally care and opportunities.16 The increasingly ‘reasonable adjustments’ are required as it gives a legislative effect to the goal of making open public play spaces fully accessible to anyone. This includes the legal and human rights context of allowing children to play within their local communities safely. Over the years, the DDA was extended to cover other areas such as education and employment rights. The Special Educational Needs and Disability Act of 2001 (SENDA 2001) covers educational rights to be in school and higher education. It is the Local Education Authorities who are responsible in assessing the Special Educational Needs (SEN) that result from a learning disability.17 In the case of employment, Disability Discrimination Act of 1995 Regulation 2003 (DDA Regulation 2003) was enforced back in October 1, 2004. The Disability Discrimination Act of 2005 (DDA 2005) created in 2006 focuses on ‘Disability Equality Duty’ on public Sector organizations in order to counter discrimination in employment and to actively promote disability equality in terms of work environment. The DDA and its subsequent amendments apply to England, Wales, Northern Ireland and Scotland. Some of the regional amendments of DDA apply to different jurisdictions of UK. Specifically the Scottish Parliament legislates to ensure that all its features are provided in the policy. Over the past years, a lot of large hospitals have been established for the purpose of providing care and segregation rather than with a therapeutic purpose. Some members of the staff attempted to address all the physical and mental health needs of their long-stay patients. As these hospitals became overcrowded, the normal standards of care suffered. Since then, a lot of problems related to health care institutionalisation became rampant. As a result, a policy of resettlement from hospital to the community has been in operation in the UK for over 30 years but is not yet complete. Major policy reviews at the government level regarding some considerable implications for the future provision of health care services is likely to happen in years to come. This is in line with the international and national changes on the services being provided to people with learning disabilities as well as the changes in the attitudes of society towards them.18 Conclusion The changes in the market trend of the health institutions resulted to the decline in the quality service that was provided by the St. Lawrence hospital to Mabel. The constantly increasing demand for a long-stay hospital makes the institution overly crowded. This resulted to failure for St. Lawrence to providing necessary care needed by Mabel in order to enhance her learning skills. Most of the hospital staffs have been too preoccupied with their daily tasks to even spend some time in developing some programmes that could enhance the social and learning skills of the patients. The food provided to Mabel was also less appetizing, etc. There are psychological effects when Mabel lived in a long-stay hospital. Many times she would feel neglected and unwanted. Since she was enclosed within the institution for a very long time, she got herself used to the routine system that makes her find it difficult to adopt with the life in the community. Over time, with the help of the People First, Mabel was able to solve the negative psychological effects she developed out of living in a large institution. The social group helped her regain her self-confidence during the process of attending the scheduled group orientation. For this reason, it is generally advisable to encourage people with learning difficulties to actively get involved in special groups for the purpose of enhancing their personality. *** End *** References: 1 Oswin, M. (1994) Response to ‘Where Next for Research on Carers?’ Appendix 1. In Where Next for Research on Carers? Ed. G. Parker. pp. 17 – 21. on page18. Leicester: Nuffield Community Care Studies Unit. 2 Walker, C. & Walker, A. (1998) ‘Uncertain Futures: People with Learning Difficulties and their Ageing Family Carers’ Brighton: Pavilion / Joseph Rowntree Foundation. 3 Murray, V. et al. (1996) ‘Needs for Care from a Demand Led Community Psychiatric Service: A Study of Patients with Major Mental Illness’ British Medical Journal. June 22, 1996; 312: 1582 – 1586. 4 Dutch, S. (1999) ‘Crisis in Care of Learning Difficulties’ British Medical Journal. 1999;318:78 5 DOH (1999) ‘National Service Framework for Mental Health’ Modern Standards and Service Models. London: Department of Health. 6 Kerr, M. (2004) ‘Improving the General Health of People with Learning Disabilities’ Advances in Psychiatric Treatment (2004) 10:200 – 206. 7 Atkin, K. and Ahmad, W. (2000) ‘Family Caregiving and Chronic Illness: How Parents Cope with a Child with a Sickle Cell Disorder or Thalassaemia’ Health and Social Care in the Community. 8: 57 – 69. 8 Roth, M. (1973) ‘The Principles of Providing a Service for Psychogeriatric Patients’ In Wing, J. and Hafner, H. (Eds.) ‘Roots of Evaluation’ London: Oxford University Press for Nuffield Provincial Hospitals Trust. Pp. 215 – 238 9 Macdonald, A. and Cooper, B. (2007) ‘Long-term Care and Dementia Services: an Impending Crisis’ Age and Aging 2007 36(1):16 – 22. 10 Netten, A.; Darton, R.; and Williams, J. (2003) ‘Nursing Home Closures: Effects on Capacity and Reasons for Closure’ Age Ageing 32; 332 - 337 11 Hubert, J. and Hollins, S. (2000) ‘Working with Elderly Carers of People with Learning Disabilities and Planning for the Future’ Advances in Psychiatric Treatment 2000;6:41 – 48. 12 PAMONA (2004) ‘Annex VIII: The United Kingdom’ Retrieved: May 9, 2007 < http://ec.europa.eu/ > 13 People First of Norfolk (2007) ‘Why is Self-Advocacy Important?’ Retrieved: May 9, 2007 < http://www.peoplefirstofnorfolk.org/ > 14 Fitzgerald, J. (1998) ‘Time for Freedom? Services for Older People with Learning Difficulties’ London: Centre for Policy on Aging/Values into Action/Joseph Rowntree Foundation. 15 Cattermole, M.;, Jahoda, A.; and Markova, I. (1990) ‘Quality of Life for People with Learning Difficulties Moving to Community Homes’ Disability and Society, Volume 5, Issue 2, 1990. pp. 137 – 152. 16 ODPM (2003) ‘Developing Accessible Play Space: A Good Practice Guide’ Office of the Deputy Prime Minister. 17 Swain et al. (2003) ‘Controversial Issues in a Disabling Society’ Buckingham: Open University Press. 18 Dunn, K. and Moore, M. (2005) ‘Developing Accessible Play Space in the UK: A Social Model Approach’ Children, Youth and Environment. 15 (1); pp. 331 – 353. Read More