Transitioning From Childhood To Adult With Learning Disabilities - Essay Example

Transitioning from childhood to adult with learning disabilities Before a social policy can be effective in assisting individuals with learning disabilities as they make the complicated transition between childhood and adulthood, policy makers must understand precisely what these individuals are facing and the types of coping skills they may or may not have developed as a result of their childhood education. Since the term was first coined in 1962, researchers in the field have identified nine significant elements of learning disabilities that have remained consistent through the most prominent definitions of the term used in the modern period. These elements include underachievement determination, central nervous system dysfunction etiology, process involvement, presence throughout the lifespan, specification of spoken language problems as potential learning disabilities, specification of academic problems as potential learning disabilities, specification of conceptual problems as potential learning disabilities, specification of other conditions as potential learning disabilities and allowance for the multihandicapping nature of learning disabilities (Reiff, Gerber & Ginsberg, 1993, pp. 114-115). With such a widespread base of elements, ranging from physical to performance deficits, it should not be surprising that the definitions themselves are so widely varying as to make it difficult to establish a working stance. However, the Foundation for People with Learning Disabilities offer a broad definition of the term that can be quickly understood by outlining it as a condition in which there is a presence of “a significant intellectual impairment and deficits in social functioning or adaptive behaviour which are present from childhood” (2003). Working from this definition, it will be shown how various social policies enacted since 2001 have been effective in assisting people with learning disabilities and their families overcome some of the major challenges that arise when the learning disabled child makes the difficult transition into adulthood as well as some of the deficits this program has yet to overcome. To understand the scope of the problem, it is necessary to understand how many people in the UK are currently affected in their daily lives by some sort of learning disability, whether it is mild or severe, simple or complex. Although there remains no reliable official numbers regarding the prevalence of learning disabilities, primarily because of a lack of agreement among agencies regarding an ‘official’ definition as to what exactly constitutes a learning disability, it is estimated that there are approximately 580,000-1,750,000 individuals currently living the UK who suffer from some sort of learning disability, including approximately 230,000-350,000 people with severe disability (Foundation for People with Learning Disabilities, 2003). This is significant because reports show that up to 40 per cent of these people with learning disabilities will also suffer from some sort of mental health problem as well as a high level of unrecognized illness with reduced levels of health services and proper preventative screening. Additionally, the Foundation for People with Learning Disabilities (2003) has found that at least 23 per cent of all adults with learning disabilities have suffered some sort of physical abuse while another 47 per cent have suffered significant amounts of bullying or verbal abuse as a result of their handicap. A survey of 2898 people conducted as recently as 2003 found that most of the learning disabled people who had working positions in society did not actually receive a paycheck while less than one in five of them had never attended school in a mainstream classroom. “One in three people said they did not feel safe either in their homes, in their local area or using public transport. Nearly one in ten people said they had been a victim of crime in the last year. Two out of three people in supported accommodation had no choice over with whom or where they lived” (Emerson, 2003). These findings indicate a great need for social reform in addressing the needs of these people while the legislative record shows a woeful lack of response on the part of government until relatively recently. For thirty years prior to 2001, little to no significant change took place in policies managing the lives of learning disabled individuals. Several initiatives have been put in place to assist individuals with learning disabilities to achieve equal rights to those who do not suffer from these handicaps. The Education Act of 1970, for example, established equal access to education for children with learning disabilities. This Act required the state to provide some level of education to all learning disabled children aged 5-15 regardless of their level of disability. For the first time, families of learning disabled children could also be relieved somewhat of their daytime duties for care. “The Jay Report in 1979 thought this had such an impact on the lives of families with severely handicapped children as to partly explain why far fewer children went into residential care in the 1970s” (Roberts, 1981). White papers published in 1971 called for greater normalization for those individuals living with learning disabilities of varying types, insisting that these citizens “had a right to live lives as close as possible to those of other people, should participate as much as possible in the decisions that affect their lives, [and] should use the same services as everyone else” (Roberts, 1981). This laid the groundwork for the 1990 Community Care Act, which worked to provide new housing choices to adults with learning disabilities. This included the concept that people with learning disabilities had the right to live in normal neighborhoods within the community. While the act also provided for the establishment of numerous agencies each specializing in different aspects of care for the learning disabled, this also served to cause a great deal of confusion in the mental health field and made it more difficult for individuals to find the kind of care they needed. “In 1995 the Disability Discrimination Act was the first step towards fully recognizing the civil rights of people with a learning disability. It made equal opportunities a right for people with a disability” (Stone, 2005). However, it wasn’t until the 2001 White Paper called “Valuing People” in England, and similar papers “Fulfilling the Promises” in Wales and “Regional Strategy and Priorities for Action” in Northern Ireland that the difficulties actually being experienced by those with learning disabilities were addressed, including the difficulties in finding adequate services when making the transition from childhood services administered through the educational institutions to adult services administered by a variety of social service agencies. “Valuing People” set forth several guiding principles designed to make life better for those citizens with learning disabilities by ensuring not only that their rights were protected as much as possible, but also to encourage the various social services, medical and educational agencies to cooperate in managing the treatment and support of these individuals from the cradle to the grave. The paper didn’t just include information provided by health care professionals or government officials, but also took input from people with learning disabilities, family carers and other people associated with learning disabilities (Valuing People, 2001). One of the earliest conclusions of the white paper is the observation that many people with a learning disability live lives that are very isolated within the greater society, frequently only giving them association with family carers, educators, medical health professionals and other individuals with learning disabilities. “It also says that there is a wide national variation in the quality, availability and coverage of services for people with a learning disability” (Congdon, 2006). These differences included the amount of money spent for each individual, the level and quality of services available, the type of housing options offered, the degree of control each individual is able to have over their own lives and the quality of health care provided to each individual, among other things. Through the establishment of Learning Disability Partnership Boards in each area, this larger initiative strives to protect the civil rights of learning disabled people by ensuring they each are given the opportunity to express their right to vote, get married, have a family and have access to a good education. It also works to support their independence, give them more choices in how they will live their everyday lives and to be included in the activities of the greater community. Among the various objectives outlined, one of the most stressed is the need to provide each learning disabled individual with a personal advisor throughout their transition period from childhood to adulthood who will be available to help them plan for their future while ensuring all of their care needs are met. One initiative put in place by the government following the Valuing People white paper is entitled Connexions, which is designed to facilitate the transition between child services and adult services in a more direct and individual way. In 80 to 90 per cent of the cases making this transition, the process is handled by adult rather than child services, exposing a gap in communication among agencies. The Connexions initiative is an attempt to bridge this gap by encouraging organizations to pool their resources as a means of conducting a joint assessment of the young people about to make this transition and develop a stable care package for their future. This is done primarily through the introduction of what is referred to as a person-centered approach. “A person-centered approach includes the full range of options – housing, education, leisure and employment – as well as care and support” (St. Quentin & Disney, 2003). As it sounds, a person-centered approach concentrates on keeping the learning disabled individual at the center of all decisions made regarding the future of that individual. “It focuses its energy on finding out what the person wants to do with her/his life, and the support needed. It is a continuous process. New goals can be set as the person’s experience and expectations grow” (McIntosh, 2001). As part of this process, the person at the center is also the person who makes the initial decisions regarding who should be involved in their planning circle, which serves the double purpose of getting the individual more involved in outside activities and associating with people outside of the immediate family. Aspects covered in person-centered planning include planning for the future, essential lifestyle planning, paths and maps as a means of addressing all of the capabilities of the person and ensuring a well-rounded lifestyle that remains as independent and self-controlled as possible. “One of the outcomes of person-centred planning is that individual hopes and aspirations can be aggregated, and a map can be achieved about what services and supports are required to help individuals achieve these aspirations” (McIntosh, 2001) even while it works to encourage the various social agencies to work more in harmony with each other and with the welfare of the individual in mind. This approach has seemed to accomplish many of the objectives in helping the child transition smoothly into adult services, with a Connexions Somerset manager exclaiming “I think we have uncovered an unmet need!” (St. Quentin & Disney, 2003). However, it has only worked for those individuals aware of the services available, which has not been adequately advocated as yet While the initial results of the initiative, coming out in 2002, indicated a much improved system of management, there remained room for improvement as this approach focused on bringing the agencies together to discuss the individual while the actual involvement of the learning disabled individual him or herself in ensuring all needs were properly addressed was somewhat overlooked. In a report issued in 2004, Rob Greig indicated that the Valuing People program is working in many ways. More people are being listened to regarding their own care and more people are living independently with more control over their own lives. At the same time, more and more organizations are working together in partnership arrangements to meet the needs of learning disabled individuals more completely as more community education is getting out regarding equal rights to learning disabled people. One family writing to Greig in response to a call for input regarding how the Valuing People program was working for them indicated the level of despair they felt when they were told family services would stop for their family upon their son’s 18th birthday. “Just because he was going to be 18 didn’t mean he no longer needed support. We felt so disempowered and tired of fighting” (Greig, 2004). However, through the knowledge they gained from their new social worker and the policies set forth in Valuing People, they indicated they were able to retain the types of services they needed to take care of their now-adult child. Despite the fact that more people are gaining greater control over their lives through Direct Pay of support, increased access to jobs and greater choice regarding where they are going to live, families are still reporting that one of the most difficult times in a learning disabled person’s life is during their transition from childhood to adult status. Although Valuing People and the policies that have been initiated are soundly based on evidence that allowing these several agencies to work in conjunction in providing the learning disabled individual the care and support they need, thereby enabling them to each bring in their own skills, expertise and resources, studies conducted by the Department of Work and Pensions (2004) have indicated that there is not enough cooperation happening between these agencies to be of benefit to the actual individual they are attempting to assist. “A key theme of Valuing People was that learning disability services needed to work in partnership with agencies in housing, employment, health, education and leisure to enable people with a learning disability to access these services. (We are referring to adult provision - there is little evidence that Valuing People has influenced multi-agency planning in children and young peoples services.)” (St. Quentin & Disney, 2003). One core problem with this system, though, remains in the difficulty in obtaining appropriate funding from the various core agencies to properly address the needs for these services. Also, because of the way these services are structured, disabled people are finding it necessary to determine the various different criteria necessary to qualify for various services offered through each individual agency, causing many needs to remain unmet as individuals become confused in seeking services or have difficulty locating the appropriate agency. In a study by Morris (2002), it was determined that the greatest degree of inter-agency coordination was occurring in the precise transition area between children and adult social services as well as between educational and social service departments. A great many of these issues are brought forward when researchers take the time to talk to the learning disabled individuals themselves. The Developing Connexions report, published in 2004, concluded that more learning disabled youngsters needed to be included in making decisions regarding their future and what types of services they would benefit most from as most children are only provided with a limited range of options. In addition, it was found that it remains true that very few learning disabled individuals are consulted when it comes to developing new social policies and services that might meet some of the more blatant challenges being faced by those living through it. In addition, the Greig report (2004) indicates that the Connexions staff was frequently overworked and undertrained in how to provide adequate services to young people with learning disabilities. These problems have been widely recognized within several government agencies, however, and efforts have already been undertaken to try to expand the services available to those individuals going through this transition phase. A study conducted in Somerset County illuminated several areas in which better service could be provided for learning disabled young people making this transition to adulthood as well as those individuals charged with their care. According to St. Quentin and Disney (2003), the Connexions service does seem to be the most appropriate and effective service agency to handle the transition process as they coordinate the various service agencies and communicate with the learning disabled person to help them realize their individual goals. However, several caveats must also be in place. The study emphasizes the importance of ensuring there is adequate communication occurring between the various agencies as well as the individual and his/her family from the time they are diagnosed with a learning disability until their eventual death. To ensure that all learning disabled individuals have access to housing, employment, leisure and educational opportunities, it is also necessary that advocacy services for the learning disabled are adequately developed, agencies continue to work on better partnerships with stronger commitments to planning and transition plans for each learning disabled individual should be developed and firmly in place at least six months before the individual reaches his/her 18th birthday (St. Quentin & Disney, 2003). Other initiatives have since been introduced as well, with similar aims to improve services and aid the transition process from one level of service to another. The Disability Discrimination Act was changed in 2005 to ensure public bodies were responsible for enforcing policies making all rail vehicles accessible to people with disabilities, including wheelchairs, changing the Blue Badge Parking Scheme for people with disabilities and increasing the duties on reasonable arrangements to landlords and others in charge of rental properties. The Mental Capacity Act was also created in 2005 in order to provide a legal structure that would help empower and protect people with learning disabilities who are incapable of making their own decisions (Stone, 2005). From these studies, it has become apparent that one of the most difficult periods in the life of a learning disabled individual remains in their transition period between childhood and adulthood. This is not only because of the difference in expected increased responsibilities on the parts of both the community and the individual, but also because of the change in available services and service organizations that serve adults as opposed to children. Because of the way in which these services have been divided among various different organizations, it has become difficult for individuals, whether they are the learning disabled individual him or herself or their family caregiver, to determine which agencies can provide the support necessary and what type of qualification criteria are expected before receiving aid from said organization. Although significant strides have been taken to ensure that learning disabled individuals retain as many rights and privileges as other citizens in the UK and are enabled to retain as much control over their own lives as is possible through recent initiatives such as Valuing People, there remains insufficient community education regarding these services getting into the public to ensure that the majority of learning disabled individuals and their families are aware of the help available. In addition, initiatives specifically targeted to assist with the difficult transition phase, such as Connexions, remain equally unheard of by those people who would benefit most from it. While these are all steps in the right direction toward making this transition easier and more productive for learning disabled people as well as the community at large, more needs to be done to ensure that the voices of the individuals most affected are heard and that these people gain access to the services and advocacy groups available to them. References Congdon, David. (31 August 2006). “Valuing People: A Strategy for Learning Disability for the 21st Century.” Ask Mencap. Mencap. Retrieved 2 September 2006 from < http://www.askmencap.info/IFM/GenInfo.nsf/GenInfo/EBFD08AB46845D3A80256E94004EA9F9?OpenDocument> Department of Work and Pensions. (2004). Research report no. 204 – “Making the Transition: Addressing Barriers in Services for Disabled People.” “Developing Connexions.” (2004). London: Foundation for People with Learning Disabilities. Emerson, E. (2003). “Adults with Learning Difficulties in England.” Office for National Statistics and Health and Social Care Information Centre. Foundation for People with Learning Disabilities. (11 July 2003). “Statistics on Learning Disabilities.” Fundamental Facts: All the Latest Facts and Figures on Learning Disabilities. London: Foundation for People with Learning Disabilities. Greig, Rob. (2004). “The Story So Far…Valuing People: A New Strategy for Learning Disability for the 21st Century.” Valuing People Support Team. McIntosh, Barbara. (2001). “Person-Centered Planning: Making it Work in the UK.” Foundation for People with Learning Disabilities. Morris, J. (2002). “Moving into Adulthood: Young Disabled People Moving into Adulthood.” Joseph Rowntree Foundation. Reiff, Henry B.; Gerber, Paul J. & Ginsberg, Rick. (1993). “Definitions of Learning Disabilities from Adults with Learning Disabilities: The Insiders’ Perspectives.” Learning Disability Quarterly. Council for Learning Disabilities. Roberts, Andrew. (1981). “Timeline.” Mental Health History Timeline. Retrieved 2 September 2006 from < http://www.mdx.ac.uk/www/study/mhhtim.htm#1970> St. Quentin, Paul & Disney, Janet. (October 2003). “Transition: The Experience of Young People and their Families in England.” Tizard Learning Disability Review. Stone, Liz. (30 September 2005). “Learning Disability.” Ask Mencap. Mencap. Retrieved 2 September 2006 from < http://www.askmencap.info/IFM/GenInfo.nsf/GenInfo/DBBF32FE55FA560880256E92004A4E6C?OpenDocument#Header4> Valuing People. (2001). White paper. Care Services Improvement Partnership. Retrieved 2 September 2006 from < http://valuingpeople.gov.uk/dynamic/valuingpeople4.jsp> Read More