Developing Independence in Client with Disabilities

Critical Perspective on Diversity

Introduction

Mandy, a 44-year-old female with moderate learning difficulty, epilepsy, and with a congenital deformity of her limbs has restricted mobility, and limited manual dexterity. Mandy’s condition has caused her to be cared for by her parents since she was born, with the exception of two incidents. Mandy’s father was well informed, he managed to obtain for Mandy full benefit entitlement as well as a substantial payment from the independent living fund before he passed away. Mandy’s mother is the primary caregiver, and the funds that her father set into place before he died pays for her share of living expenses, food, medication, and related allowable expenses. Additionally, the money that Mandy receives permits her to have a carer visit the home for two hours, five days a week, to assist in helping Mandy’s mother. The carer assists in helping to move and wash Mandy as well as dress her and other tasks as a result of the advancing age of Mandy’s mother, whose health is deteriorating.

The loss of her mother’s husband has left her in a state of long term grieving, for which she has been taking anti-depressants as well as anti-inflammatory drugs. Mandy’s mother has always been there for her, but she is approaching 60 years of age. Over the years, Mandy’s mother has become rather rigid in her beliefs concerning what Mandy can as well as cannot do. Mandy attends a respite care unit at a long stay hospital and has informed her key worker she wants to leave home as things there have become tense and Mandy does not get along with her mother presently as she did in the past, owing to her new condition.

Mandy’s respite care is a short term break for patients from their caregivers as well as vice versa, whereby in Mandy’s situation, she is away from home as opposed to someone coming to the house (Rett Syndrome Association, 2006). Respite care is an official program that is a part of the ‘National Strategy for Carers’ that specifically is designed to provide carers with a break from devoting their time to the individual they look after, which is seen as an important component in maintaining a healthy relationship between the caregiver and the patient (Department of Health, 2007a). Prime Minister Tony Blair, in a forward to the ‘National Strategy for Carers’ document stated “The national strategy for carers – the first ever by a Government in Britain – sets out what we have been doing, and what we are going to do. It offers practical help in ways which are needed, and which will work. Carers will have better information. They will be better supported. They will be cared for better themselves” (Department of Health, 2007a). And while Mandy’s mother performs her care giving activities out of love for her daughter, the implication is clear. The publication for the government informs us that the important service rendered by carers is performed primarily by paid caregivers, representing three-fifths of the total number of people that are looking after an individual with a disability (Department of Health, 2007a).

The publication states that women are more likely to be carers than males, and that throughout the United Kingdom there are over 855,000 individuals that care for someone over 50 hours a week, with over 5.7 million, representing one out of every six households (Department of Health, 2007a). In Mandy’s mother’s case, it represents just the ten-hour break she gets on a weekly basis. Respite care is one of the initiatives under the program-implemented buy the government to provide assistance to carers. As mentioned, Mandy has told her key worker that she would like to leave home. Because Mandy attends a respite care unit, there are no cost implications as it is a part of the national program under the National Strategy for Carers (Department of Health, 2007).

Mandy’s disability allowance, as is the case with all social care allotments, requires residency in the United Kingdom, as per the following requirements 1). That the applicant must normally be a resident in Great Britain, 2). The applicant must not be subject to immigration control, 3). The applicant must be in Great Britain when making the claim, and lastly 4). That the applicant must have been in Great Britain, the Isle of Man, and either Jersey and or Guernsey for at least 26 weeks of the last 52 weeks (Directgov, 2007a). As Mandy qualifies and has qualified under the preceding, her desire to change her circumstances from home assisted living to a long stay hospital requires a local council assessment (Directgov, 2007b). The preceding is a part of the regulations and requirements in order for the local council to assess as well as work at the support the patient needs for such a change. As Mandy is learning impaired, and her mother has stated that she is the one who decides what Mandy can or cannot do, Mandy will be filing for the change in carers without the aid of her parent. The learning disability impairment makes the preceding a difficult proposition for Mandy to take on herself, thus she will need help. Her key worker at the respite care unit has offered to help Mandy and thus in order to do so, needs to contact the disabilities teams social worker that is assigned to Mandy’s case, or simply the disabilities team itself, as well as the ‘Valuing People Support Team’ (Care Services Improvement Partnership, 2007a).

The Valuing People Support Team was established by the government to address an unintended yet real concerns and problems faced by people with learning disabilities attempting to either be their own voice, or to be heard in the social care system regarding their own personal desires and wishes (Department of Health, 2007b). Prime Minister Tony Blair aptly sums up the purpose of the Valuing People Support Team in stating that People with learning disabilities can find “… themselves pushed to the margins of our society …” as a result of unintentional circumstances in being able to find “… the right care, health services, education …” and other aspects (Department of Health, 2007b). He continued that “At best they feel obstacles are constantly put in their way by society” (Department of Health, 2007b). The foregoing is easy to understand when one realizes that an individual with a learning disability has problems in not only finding out things to help themselves, they have problems in completing the paperwork and other facets of the system that has been put there to help them, but in many instances in the past did not as a result of the gap between their learning disabilities and communicating their needs to the system without the help of family members or other parties who either might not desire them to take such an action or simply do not have the time to assist them in wading through the process (Department of Health, 2007b).

The Department of Health describes people with learning disabilities as being the most vulnerable as well as socially excluded individuals in the British society (Department of Health, 2007b). In terms of social services, as well as other branches of governmental aid, individuals with learning disabilities faced, in the past, poorly coordinated services, poor planning, and most importantly they had little choice and or “… control over many aspects of their lives” (Department of Health, 2007b). The publications continues that day services, the contact point for people with learning disabilities, were “… not tailored to the needs and abilities of the individual”, the last point being ‘abilities’ as the operative word in this instance. People with learning disabilities may be able, over a period of time, or instantly, to verbalise their wants, needs and desires, however, under a system with so many departments and layers, getting in touch with the right department represented a problem. Under the Valuing People Support Team they have a governmental agency that is their road map as well as navigator and operative arm to help them through the system as quickly as possible to the services they needs and or desire.

If one thinks about it, the Valuing People Support Team also serves another highly important service, one of being in the position of patients accessing the system. Through a governmental agency helping people to use the system their experiences will provide a wealth of feedback from cases via which to monitor the effectiveness of the entire spectrum of services offered and provided by the government in this area, and make recommendation that have power. This inside system handling of the problems of users of services through its cases is the ideal manner by which to not only put the system on its toes, it represents the perfect feed back mechanism via which to implement improvements and change.

In Mandy’s case, this means the first break from one of her parents in her entire life. A prospect, if one is to put themselves in her shoes, that must seem quite intimidating and fearful, in that she has to put her trust in what can be termed as strangers to treat her as family and see to her best interests as her father did. The Valuing People Support Team operates under four key principles, which are 1), Rights, 2). Independence, 3). Choice, and 4). Inclusion as its operational foundation Department of Health, 2007b). Applying these to Mandy’s situation enables one to see the fit and vision of the preceding. The idea is to provide them with choices, thus giving them control over their lives as opposed to being immersed in a society whereby their prospect of finding the appropriate services and or information is left to a ‘well-informed carer’ such as Mandy’s father who waded through all of the necessary steps and information gathering processes to obtain the full benefit for his daughter. In terms of where Mandy is today, in desiring to take control over her life, she needs that same type of assistance, something that was difficult to find.

In order to accomplish the objective of providing individuals with learning disabilities with the options to access the system in the manner in which it is intended to work, the Valuing People Support Team was established to function as a ‘well-informed carer’. In the instance of Mandy, the Valuing People Support Team white paper set forth that it understands and has been established to help learning disabled individuals to access housing and other services that fit their needs. In this instance it entails the shift of Mandy from home care assisted living to hospital stay assisted living. Acting in a real sense as her advocate, the Valuing People Support is there to walk Mandy through the maze of social services to aid her in the achievement of her objective. As per its web site, under the Care Services Improvement Partnership, the Valuing People Support Team is there to work with 1), Learning Disability Partnership Boards, 2), Local people and organizations, and 3), Government Departments (Care Services Improvement Partnership, 2007a). The ‘Team’ 1) offers support as well as advice to people who want to and or are seeking to change services, 2) help people to get together for the purposes of talking and sharing ideas, 3) to listen to what people are saying, and 4) to feed this information back to the government to enable them to have the direct information from the users of the system so that things can be changed and improved for the better (Care Services Improvement Partnership, 2007a).

In Mandy’s instance, the Valuing People Support Team as an advocacy department that has been specifically set up for patients with problems like herself (Care Services Improvement Partnership, 2007b).

Advocacy

The preceding represents the solution to Mandy’s problem, an advocate to listen to her concerns, counsel her as to her options, obtain agreement from Mandy as to the direction she would thus like to take knowing and understanding her options, and then to take the appropriate action based upon the foregoing. The advocacy services segment of the Valuing People Support Team offers the following services 1) self advocacy to enable individuals to speak up for themselves, 2) citizen advocacy whereby people can get to know an individual that has a learning disability and thus be able to get their wishes understood as well as heard, and 3) a short term issue based or crisis advocacy whereby a person is usually paid to speak up for someone regarding a particular issue and or when that person is in a crisis (Care Services Improvement Partnership, 2007b). The Advocacy Toolkit was set up to aid individuals in waking through what this service offers and how it can help. In Mandy’s instance, she received the help of her key worker at the respite care unit to get her to the Valuing People Support Team, which is the same course of action that would have been taken by the disabilities team.

The disabilities team would have also been able to aid and assist Mandy in the getting to her destination. These teams, disabilities, represent service groups in the individual councils that are positioned within the individual authorities, whose service parameters are limited, however, they are there to assist. A typical disabilities team web site indicates its purpose as being a point of contact regarding disabilities issues that affects young people from partner organizations and other agencies (connexions, 2007). It is in place to offer and provide specialist services to young people between the ages of 13 and 25 who have a statement of special education need. They function as well as offer a limited and lower level specialist service in the pattern of the Valuing People Support Team that is on a lower level, yet in the same vein. Specifically they offer 1) support as well as guidance to personal advisers concerning individual cases, 2) training to personal advisors concerning disability issues, 3) a direct service for young people that have complex needs, 4) an innovative working arrangement with partner organizations to help young people identify need as well as secure funding, 5) independent advice, along with guidance and information regarding local as well as national special needs provisions, 6) working with individuals as well as groups as advocates and brokers, 7) and provide access to other personal advisors whereby they can help to fulfill requirements as well as guidance as set by the government concerning young people that have a learning disability and or any other type of disability (connexions, 2007).

The disabilities team would have not been able to assist Mandy in obtaining her objective of changing her carer, as a result of her age, but could have referred her to the Valuing People Support Team in order for Mandy to complete the process. Advocacy, as stated by Valuing People is that the government’s purpose and aim in putting this service into place was to provide a range of independent advocacy services in each area that permits people with learning disabilities to be able to choose the service(s) that best meet and fulfill their needs. The independent nature of the advocacy services represents one of, if not its most important features and facets as it ensures impartiality on the part of the patient (Care Services Improvement Partnership, 2007b).

In addition to advocacy services, the Valuing People Support Team handles many, many other services, including arrangement to place someone at an appropriate residence. Specifically, the Valuing People Support Team states that a long stay hospital does not represent a good place for people with learning disabilities to live in (Care Services Improvement Partnership, 2007c). This option for Mandy is closed as all learning disability patients at long stay hospitals were moved as of March 2006 (Care Services Improvement Partnership, 2007c). Thus, the Valuing People Support Team will need to work with Mandy to hear her needs, wants and desires and advise her on her options. Mandy could not be in better hands than these, as they oversee the full range of services that are available within the health care and social services system. The fact that the Valuing People Support Team oversees the full range of services under the health and social care makes it invaluable to patients as well as those seeking help for the first time. It represents a resource that aids all of the departments in getting the person to the right area quickly and avoid moving people around form service to service, and or having them call, hunt and become frustrated in obtaining the assistance and help that they need. .

Conclusion

Mandy’s situation is in no way unique! There are others that have either similar and or drastically different problems who need empowerment in order to avail themselves of assistance and help when either in trouble or seeking the right governmental services for their condition. The existence of the Valuing People Support Team would be helpful for an immigrant without papers under hospital care in finding out exactly what their options are in terms of support, aid and immigration as a result of a recent event that ended them in that position.

Specifically, the case of a gentleman named Boris who arrived in England twenty years ago and never secured his papers. Having had a reversal in circumstances, Boris has been living illegally in England and would up in a hospital as a result of kidney failure. His circumstance in living in an unheated room at the rear of a commercial establishment was unsuitable for return to after his hospital incident that requires follow up care. And as a result of his status, housing options were not open. The Valuing People Support Team represents a resource to aid Boris and the hospital to help this individual.

The Valuing People Support Team represents an important governmental resource to aid the citizens of the United Kingdom in wading through he huge maze of services regulations and requirements that is the system of health and social services care. It is helping Mandy and countless others, and will be of aid to Boris as well

Bibliography

Care Services Improvement Partnership (2007b) Advocacy. Retrieved on 1 May 2007 from http://valuingpeople.gov.uk/dynamic/valuingpeople61.jsp

Care Services Improvement Partnership (2007c) Long Stay Hospitals. Retrieved on 1 May 2007 from http://valuingpeople.gov.uk/dynamic/valuingpeople127.jsp

Care Services Improvement Partnership (2007) What is the Valuing People Support Team? Retrieved on 1 May 2007 from http://valuingpeople.gov.uk/dynamic/valuingpeople16.jsp

connexions (2007) What is this service. Retrieved on 1 May 2007 from http://www.connexionsteesvalley.co.uk/practitioners/aboutus/diabilities/

Department of Health (2007a) National Strategy for Carers. Retrieved on 1 May 2007 from http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4006522

Department of Health (2007b) Valuing People. Retrieved on 1 May 2007 from http://www.archive.official-documents.co.uk/document/cm50/5086/5086.pdf

Directov (2007b) Care Homes and hospital. Retrieved on 1 May 2007 from http://www.direct.gov.uk/en/HealthAndWellBeing/HealthServices/CareHomes/DG_10031519

Directgov (2007) Disability Living Allowance – what else you need to know. Retrieved on 1 May 2007 from http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10012424

Rett Syndrome Association (2006) Guidance Note 1: Respite Care or ‘Short Term Breaks’. Retrieved on 1 May 2007 from http://www.rettsyndrome.org.uk/_downloads/respite_booklet.pdf