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Introduction
This paper discusses the unfortunate circumstances that learning disabled people faced previously in the days of our fathers and how the care management has changed from institutionalised impersonal management to the deinstitutionalized person centred management of today. A recent incident which occurred stirred my emotions and set me on a path to discover the realities of life which were and which have changed for the better thankfully. The focus is on the learning disabled and the dyslexic. My experience has taught me that nursing requires profound skills of patience and affection but I have not been able to guess how much till now.
Tom
The residents of my area held a function in their yard to welcome new neighbours into our midst. Tom, 20 years old, appeared to be a problem for his parents and his siblings; they were trying to push him back into the house. They related to me the difficulties this child was having since birth, knowing that I was a nurse. That he had a learning disability dyslexia was discovered just recently when they took the boy to a new psychiatrist in the hospital near us. Dyslexia is a common problem now and involves difficulty in reading or writing. Tom could not understand even simple instructions. Sometimes he appeared confused and could not make out left from right. Frequently frustrated, he has never exhibited confidence in any of his activities. This exposes him as a person with low self-esteem. While his siblings are happily moving about confidently working on the computer or excelling in studies, making the parents proud, he feels left out and lost. The dyslexics did not have support from the professionals in the form of diagnosis or care at the national level when Tom was born. I reassured the family and convinced them that I would help out by finding the right places to take him for care. In this attempt I discovered a lot about disabled people and learning disabilities. I was surprised that professionals were not committed to providing care earlier.
Learning disabled children are classed with the mentally handicapped. Previously managed as a group in hospitals around the 1970s, they were practically neglected. (Goffman, 1961 in Malin, 1995, p. 63). The staff maintained a social distance from the children: bare necessities were performed; interpersonal relationships were not maintained (Malin, 1995). The realization that the clinical consultants were not performing their duties to the mentally handicapped led to the appointment of nurses for the mentally handicapped. Effective rehabilitation was also not being done (Malin, 1995, p. 63). Researchers complained of the unchanged plight of the needy children even then: nurses were not doing the job of caring for them then (King et al, 1971 cited in Malin, 1995). This knowledge pains me and I have vowed to do something for the learning disabled in my capacity as a nurse. The concept of community care did not agree with the psychiatrists who wanted to be solely responsible for the mentally handicapped (Shapiro, 1970 cited in Malin, 1995, p. 63). The Seebohm Committee conceded that community care was to be handled by new bodies and that the concept of ineducability which was prevalent till then was to be abolished. The Education (Handicapped Children) Act of 1970 indicated that all children, regardless of handicap, were to be educated and the local education authorities were to be responsible. Social service departments were set up. The concept was better implemented after the White Paper “Better Services for the Mentally Handicapped”. Rehabilitation became the new theme. (Malin, 1995, p. 64). The number of care homes, private and voluntary homes rose. Not long after came the multidisciplinary care (Gunzburg, 1973 cited in Malin, 1995). Day centres were set up for children and adults. The two-tier special school system also saw light.
New policies in 1974 aimed at improving the nursing for the mentally handicapped. The views of the medical, nursing and other professionals were taken into consideration. Community care was strongly advocated after 1983. The Jay Committee report stated that the mentally handicapped had a right to enjoy normal life, to be considered as individuals and to be given the maximum care to tap their potentials (Malin, 1995, p. 68). The public had accepted the norms. Children with disabilities were still finding difficulties in being admitted to normal schools by the new concept. Tom also had this experience. Professionals began to be interested in the mentally handicapped in the 1990s. The needs of the disabled people began to be cared for and specialist care was also made available. The quality of their lives improved. Genetic engineering began to play a role. People with learning disabilities were being sterilized. Pregnancies diagnosed with risk of learning disabilities were aborted. Untreated children with learning disabilities became less. The disabled persons began to make themselves heard. Advocacy and empowerment had been instituted: self advocacy and citizen advocacy were seen.
Tom is lucky that the individualistic care had been taken over by the person centred care management prevalent now. The different professionals in the multi-disciplinary team provide the care management and this includes the community too. Their roles facilitate the self determination of disabled people to learn. Tom and his family would be assisted to take control of their lives and introduced to support services, professionals and the community resources (Cambridge and Carnaby, 2005, p. 34). Each person in the multi-disciplinary team would have something to offer towards the management of Tom’s condition. The professional medical specialist diagnoses the case, medically manages it and refers for a specialist consultation if necessary. The consultant psychiatrist provides further specialist management. The nurse provides the actual bedside care in case Tom is hospitalized for any reason. The social worker advocates for Tom and helps to empower him. Support organizations provide the funding and make the arrangements for Tom to be housed in a care home if necessary and for treatment. Social support by the family enables him to persist in his endeavours. The community provides similar support and includes Tom in activities where his talents are exhibited. He has a talent for drawing, carpentry and creative painting on the computer. Training him in skills for employability is another support by organizations. He is being prepared for the advertising field where his creative abilities may be exhibited. Employers with the business of advertising are prepared to take Tom in their share of the responsibility of supporting them. This kind of approach does provide me with a bigger responsibility of caring for the learning disabled when they are hospitalised or attending the nearby community centre. Tom will have my support even otherwise as he happens to be my neighbour and is within my reach always.
Person centred planning involved the four principles of rights, independence, choice and inclusion (Mansell and Beadle-Brown, 2005, p. 19). The service users like Tom can express his aspirations himself or get someone else to do it for him to overcome the constraints of the outcome: the professional who attends to the disabled person sometimes does not provide the service as required by the service user (O’ Brien. And Lovett, 1992). Occasionally, hurdles are found in the service delivery (Wilcox and Bellamy, 1987).. Individual practitioners and managers play important roles in carrying forward the person centred care planning effectively (Cambridge and Carnaby, 2005, p. 10)
Person centred care for dyslexics
Though much support is solicited from tutors, employers and support groups, dyslexic adults like Tom are also expected to familiarize themselves about their drawbacks and find ways of organizing and preparing themselves for employment (Reid and Kirk, 2001, p. 96). Tom will have to practice target setting, time management, finding a comfortable place to study and using aids to support learning as strategies for organising care activities which he can manage himself but professional support must be behind such ventures. Study programmes must be planned for achieving different targets for work time, personal engagements for meals and shopping, and regular commitments like church. Tom’s family must be committed too.
Though support groups are available, Tom has to practice self advocacy (Reid and Kirk, 2001, p. 153). Useful assistance is provided by support groups boosting Tom’s confidence. Employment success is attained when personal responsibility increases and Tom becomes self-directed and indulges in self-advocacy (Brown, 1997 in Reid and Kirk, 2001). Self advocacy cannot be trained for in school.
Tom will learn to overcome the major shortfalls of his disability. Tom has difficulty in reading accurately or fast. Spelling errors are frequent just like the grammar structure problems, sequencing difficulties and the need to reread text. Planning or organization of written matter cannot be done by him. Memorizing is not for him; he cannot tackle formulae or retain facts. Unable to follow several instructions given together, he has difficulty to plan his written work or studies (Reid and Kirk, 2001, p.3). Application of his learning in practical situations is not possible for him. Timed written examinations are out of the question. Tom has strengths too: he possesses comprehensive skills, problem solving skills, good vision, processes information holistically and has oral skills. However awareness about his shortfalls worries him. By the time Tom has undergone some useful training and support, many of his problems would have found some solution which either corrects him partially or allows the use of his defects to advantage.
Tom has opportunities as an adult dyslexic. Education and work are as necessary to him as any other person (Reid and Kirk, 2001, p. 1). The advice and techniques that were used for children could work for adults too. Specialist one-to-one teaching for a few hours every week would see Tom change into a more able person. Occasionally dyslexics are taught in a specialist school. Using multiple senses make up for what is lost through dyslexia. Structured lessons progressing in small steps and building on previous lessons are used in educating the dyslexics (The NHS, Directgov). Cumulative skills are developed slowly. Regular revision and relearning are necessary for Tom. Activity-based lessons also make more impact. The relevance of the lessons must be imparted to Tom so that he is eager to repeat it. Phonics would be taught so that Tom would use correct sounds to speak (The NHS, Directgov). Word processors and electronic organizers can help with organization of writing (The NHS, Directgov). Tom can adopt a multisensory technique using an MP3 recorder for lectures. Large tasks can be split into smaller more manageable ones. A mind map can be created for making notes about a topic. A mind map uses pictures or images to create visual representations. Support from the parents, community and the other professionals would further help
Tom’s potential would be evaluated and appropriate skill training and employment provided. Informing the employer about Tom’s dyslexia will not disadvantage him before his employer who is bound by law to make some adjustments at the site for him. Voice recognition software, more time for tasks and permission to access information in formats that Tom can understand are the privileges that the employer accords Tom. Tom could actually exhibit talents which are appreciated by his employers. He also may have attributes which are an advantage to his job. Though efforts had been made, it was found that more than 50% of dyslexics could not gain employment (Will, 1984). This pointed to the fact that either the children did not get sufficient training for employability or the training did not incorporate the right aspects (Gerber et al, 1992). Coordination was not seen between the curriculum and the needs for the employment (Hoffman et al, 1987). Hoffman et al (1987) found that specific job training was an essential need of 400 dyslexic adults and 1000 service providers in a study. The dyslexics are not aware of their strengths and weaknesses and so are not able to select the right type of employment by themselves. They need the support of the family or service providers to do this.
Finding employment, maintaining employment and enjoying employment for the dyslexics are the challenges (Reid and Kirk, 2001, p. 72). Most of them lack the academic qualifications and may only possess a diploma after late enrolment in a course. Usually during these courses, they perform exceptionally well. “Employer awareness and support for dyslexic adults” were problems discussed in a study of 200 professionals by Kirk and Reid in 1999. Apart from the jump in the person’s quality of life, he experiences satisfaction through his improved self-esteem, confidence and determination. The social network is more creative in ideas especially in developing social relationships (Emerson and Hatten, 1994). Disabled people need more support than others (Sanderson, 2002).
The Department of Health prioritized the implementation of the person centred care for the Learning Disability Fund and the Implementation Support Team (2001b, p. 15). Then it was decided to have a training program with implementation (Department of Health, 2001a). This was followed by the Learning Disability Partnership Boards consenting to a local framework for the programme in 2002. By 2004, the care for 50000 people attending Day Centres, 29000 people with carers but staying at home(Mencap, 2002) and 1500 people staying in residential areas under the NHS were expected, under the programme for person centred care, to have progressed (Mansell and Beadle-Brown, 2005, p. 20).
“Valuing People” is a programme instituted by the Department of Health in 2001 with a view to establish person centred planning which must not be seen isolated. The Department of Health planned to have this person centred programme as a tool for inciting change Person centred planning includes microorganisational and macroorganisartional arrangements. The former includes care management and arrangements in micro budgeting and the later includes purchasing and commissioning processes (Cambridge and Carnaby, 2005, p. 9). The matters of inspection and standards of services are additional arrangements involved; so are adult protection and risk management working partnerships. Individuals and public services are linked by care management (Cambridge and Carnaby, 2005, p. 9). A broader system link incorporates plans for vocational, housing, health action and communication needs (Department of Health, 2001, p. 50).
Many organizations were found around the 1960s: The National League of the Blind and Disabled, the British Deaf Association, the Disabled Incomes group (1965), the Union of the Physically Impaired against Segregation (1974) and The Spinal Injuries Association in the United Kingdom. The US had the Independent Living Movement. The shift to the user controlled services was the major change seen in the health and social policies for the disabled. The disabled were aware that they were living in a culturally and physically unfavourable environment: the services for them were frustrating rather than empowering them. Soon 93% organizations were found collaborating at a local level and 65% on a national level. Most user-controlled services had social models with the holistic approach to disability. Assistance was available for “information, peer support, housing, assistive technologies, personal assistance, transport and environmental access” (Leathard, 2003, p. 206). Individual and collective advocacy, education, employment and training came to be added and issues on rights became grounds for agitations.
The Department of Health attempted to bring the social and health care provisions together. A new kind of professional who is close to the disabled community is the type now looked out for as he would be more flexible with service delivery (Leathard, 2003, 209). The aim is to allow disabled people to live independently within the community and remove the economic, political, cultural and professional barriers. Policy makers at the National level now believe in the user-controlled initiatives and have introduced the 1996 Community Care Act and the 2001 Health and Social Care Act (Leathard, 2003, p. 210).
The NHS plan of 2000 proposed a single assessment by the health and social departments so as to ensure a quality management of person centred care (Weinstein et al, 2003, p. 162). The features of the plan are a single new assessment, improved coordination between the health and social care departments and the local pooling of budgets. Care trusts were established. Service users were to see only one system of care. Disputes have occurred.
Interprofessional settings have managers who work with democratic principles with professional, users and carers (Weinstein et al, 2003, p. 165). The care programme sought to coordinate the services to both sectors. The integrated services allow the use of a single point of referral, one key worker, a single assessment process and the coordination of roles and responsibilities in the agencies for mental health services and the total involvement of the service users and the carers in the care and treatment (Weinstein et al, 2003, p. 163). The National Service Framework for Mental Health requires the professionals to work as partners with the agencies for housing, training and employment. The Health Act of 1999 allowed more flexibility between the health and local authorities who cooperate and plan the care, pay each other for services and make pooled budgets for improving services.
Interprofessional collaborations require the investigation into the “roles, responsibilities, accountability, power and ideology” of the participants so that the arrangements for working together become effective (Weinstein et al, 2003, p. 165). Skepticism about the success of collaborative care led to much research. Norman and Peck (1999 cited in Weinstein, 2003, p. 165) investigated the series of facilitated group meetings between representatives of the two departments in a community setting which intended to establish interprofessional dialogue. The researchers found that there were reasons for disagreement between the two teams and for sustaining the interprofessional collaboration (Weinstein, 2003, p. 165). The clinical psychologist, the social worker, health worker appeared to believe in non cooperation due to status problems. They wanted professional support and supervision for coordination. The social workers were responsible to the local government too and therefore politicians but they were the ones who made the biggest contribution to the users and carers; they expected appreciation. Bearing the brunt of the emotional strain associated with managing the vulnerable population and developing social and therapeutic relationships with the users, the nurses were popular with the public. The other professions thought that the nurses did not exhibit their skills enough (Weinstein, 2003, p. 166). The psychiatrists could not go along with the new trend and were upset that their power and knowledge did not have sufficient influence of leadership. They did not feel up to sharing power. The other professions felt that the psychiatrists should share power with them and not carry the whole burden but they appreciated the skills of the psychiatrist and their awareness about “discrimination, poverty and social class” (Weinstein, 2003, p. 166). The occupational therapists felt undervalued though they liked the teamwork but they were doubtful about whether they would be able to use their knowledge and skills to the full. Peck and Norman (1999 cited in Weinstein, 2003, p.166) decided that government directions or Acts cannot produce a flawless collaboration.
Conclusion
The sequence of events seen in the history informs us that professionals have not really cared for the mentally handicapped including those with learning disabilities and there was no means of diagnosing learning disabilities then. The holistic approach was absent and the individual needs of the disabled were hardly met. The plight of the disabled was desolate. The present person centred approach hopefully will change the environment and help each beneficiary. Tom has a strong chance of becoming a more able person, learning to overcome his shortfalls, organizing himself and developing his strengths. He would have reached maximum achievement when he can take up an employment and remain in it. The support of his family, professionals, social workers, community, employer and support organizations would be behind his success. The person centred care that he has obtained would provide a picture that works for all disabled people. Interprofessional collaboration proves that the collaborative approach provides the person centred services effectively. The professionals of the different departments must be able to work in unison for providing person centred care. The problems of power, boundary disputes, failures of communication, inadequate decision making processes, opposing models of understanding issues, disagreements about interventions, inappropriate priority decisions, and conflicts must be overcome through dialogue and changes in policy made so that users do not suffer.
References
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