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Traditionally people with learning difficulties/disabilities have suffered from social exclusion, discrimination and marginalisation. By exploring how successful the Human Rights Act 1998 has been in promoting the rights of people with a learning disability through legislation, policy, advocacy, the care commission and SSSC and personalisation of service provision, will show if services have enabled people with learning disabilities to enjoy these rights and lead a fulfilling live as an equal citizen.
Historically Human Rights have been intricately tied to the laws, customs and religions throughout the ages. The great religions of the world contribute profound ideas on the dignity of the human being, and are concerned with the duties and obligations of man to his fellow human beings. (Brownlie,1992) The earliest rules about standards of behaviour among people were seen as fundamental to the well-being of society, under the influence of philosophers such as Grotius, Hobbes and Locke. Then, these rights were called ‘natural’ rights, or ‘the rights of man’. (Habermass, 1990)
At an international level, human rights are rules that protect people from severe political, legal, and social abuses. They include all fundamental freedoms and are based on mankind’s demand for a life in which the inherent dignity and worth of each human being will receive respect and protection. These rights exist as morals, values and ethics in human society, requiring the government comply and enforce the rights as law at both national and international levels (Anaya 2004)
The Human Rights Act 1998 is a piece of legislation that adopts the European Convention of Human Rights 1950 which has been made British law containing 30 articles which detail rights and freedom, for example Article-8 states that everyone has the right to respect for private and family life. Another European initiative is the Charter of Fundamental Rights of the European Community, signed in December 2000. It is not law, but everyone is expected to respect the charter declaring the rights of all European citizens to ‘dignity, freedom, equality, solidarity, citizen rights and justice.’ (Owen, 2008)
There have been marked improvements in the lives of people with learning disabilities in the last 30 years since the Community Care Act 1990. The current based philosophy of care has changed the instititionalised care that excluded people from the community at the beginning of the 1900’s, to community care that has enabled people with learning disabilities to live in the community as an equal citizen. However people with learning disabilities are still socially excluded, have no control or choice over their own lives and “were “more likely than others to have bad things happening in their lives” questioning to what extent are the rights of people with learning disabilities being met, on their right to ‘dignity, equality, respect and autonomy.’ (DoH 2008)
People with learning disabilities have greater health needs than the rest of the population. As it has been documented that people with learning disabilities are more likely to suffer chronic health problems. Thus requiring more frequent treatments and health care checks. (DoH, 2001). Research has also shown that these general health needs are not being met through lack of promotion and under-identification of ill health of people with learning disabilities. As people with learning disabilities still face institutional discrimination within the NHS. (Mencap,2007)
The launch of Mencaps ‘Treat me right!’ campaign, has brought to light many cases of appalling treatment that people with learning disabilities have had to endure in hospitals around the U.K. Thus bringing to light serious concerns about the way that people with learning disabilities are treated within our healthcare system. Families came forward to tell Mencap charity for learning disabilities about their experiences and the unexplained death of their loved ones that resulted from discrimination and lack of understanding in treatment from health professionals. In the hope of changing, how people with learning disabilities are treated in the health care system for the future. (Mencap,2007)
As Allan, the father of Mark, who died in August 2003 of bronchopneumonia states:
“We believe that Mark died unnecessarily. Throughout his life, we encountered medical professionals who had no idea how to deal with people with a learning disability or what it is like to be a parent of someone with a learning disability – to know their suffering, to see their distress. If only they would listen…” (As cited in ‘Death by Indifference’. Mencap.org: 2007)
Marks father explains that Mark had a severe learning disability and had very little speech, though he had his own way of communicating his needs, which his family understood. Mark was just 30 years when he died. Two months before his death, Mark had been admitted to hospital with a broken femur. While operating he suffered severe blood loss, Mark was discharged and re-admitted twice in two months, finally dying in intensive care eight and a half weeks after the operation. Mark was left suffering in great pain and distress in the days before his death due to lack of knowledge about learning disabilities. As Marks family believe that it was failure by medical professionals to understand his medical needs or the seriousness of his condition that led to his death. Stating that Marks life could have been saved if medical staff had listened to the family in the first place about Marks condition. (Mencap, 2007)
This lack of understanding from healthcare professional goes against the basic rights of people with learning disabilities by breaching their right to life and access to healthcare (Article 2) Hospital staff awareness and knowledge of learning disabilities is very poor. As staff are often ignorant of issues around consent and capacity to the extent that the person with learning disability is often denied treatment, as staff can be unaware of people’s rights. Staff can be patronizing and speak to people with learning disabilities as if they are children, being completely unaware that people with learning disabilities cannot communicate problems to them or use fancy jargon that people do not understand.
Therefore the healthcare system needs to put in procedures that safeguard the human rights of people with learning disabilities. Current Medical staff should be made more aware of the needs of people with disabilities and it should be statutory that all future medical staff should be taught about learning disabilities when they are students. Mencap put forward recommendations to the Government after their enquiry ‘Treat me right!’ and ‘Death by Indifference’ the outcome is ‘Valuing People Now: The Delivery Plan 2010â€‘2011 ‘Making it happen for everyone’ indicates the changes the government plans to implement in improving healthcare services for people with learning disabilities. (Mencap,2007)
People with learning disabilities are at greater risk of having crimes committed against them and face greater hurdles to achieving justice compared to other people in society. People with learning disabilities are often targeted specifically because of their disability, making them more vulnerable to abuse. For many people with a disability, this violation of their human right is seen as a normal part of their everyday life. Therefore people with learning disabilities are less likely to report crimes and seek the help they need to stop these crimes happening. Some people with learning disabilities do not know what is being done is a crime or are unable to communicate and tell someone about the crime committed against them. (Crime and Abuse, 2007)
The report Behind Closed Doors states that people with learning disabilities find it difficult if the complaint is about the person providing care as a person with learning disabilities may fear the loss of care, accommodation or other support if they make a complaint or report to the police. Once a complaint has been made, the Crown Prosecution Service state that the complainant with learning disabilities is not capable of giving evidence, or it will be too stressful for them to do so and this may reduce the likelihood of a successful prosecution. (Crime and Abuse, 2007)
Everyone person with a learning disability has the right to protection of property and person;(Article 3). Theft from adults with learning disabilities is not uncommon. As many people with a learning disability have to rely on personal assistants or carers assist to them in the management of their financial affairs and this trust can be violated. As the following report states, residents with learning disabilities at Dove House in Kirby Muxloe, Leicestershire became victims of crime, when the care homeowner was convicted for stealing money from residents that lived there. Leicester Crown Court reported that Caroline Rice kept half the money she withdrew on behalf of residents from their bank accounts and used false accounting to hide her crime. Rice was convicted of three counts of theft totalling £500, and eight offences of false accounting to conceal thefts, totalling £745. (Community Care, 2007)
People with learning disabilities can suffer abuse in a care setting by losing there right to freedom of movement. (Article 2) As a care inspection carried out in supported living found that staff were unaware that it was unlawful to detain people against their will. The staff, rather than the residents held the keys, which meant residents could not lock their bedroom doors. Staff locked internal and external doors to restrict movement, preventing people from freely entering and leaving and restricting access to communal areas, which they had the right to enter into. (Healthcare Commission, 2006)
However, The Regulation of Care (Scotland) Act 2001 has ensured a system of care regulation in Scotland. The purpose of the Act is to provide greater protection for people requiring care services. The National Care Commission is required by the Act to regulate these care services. By registering and inspecting services against a set of National Care Standards. The standards outline the quality of service that care users have the right to expect. They have been developed with the purpose that the quality of care provided and received throughout Scotland will be consistent. The standards also ensure that all care services will be measured against the general principles of Privacy; Choice; Safety; Realising Potential; Equality and Diversity. (NCSC, 2003) ) This ensures that all people are “safeguarded from physical, financial or material, psychological or sexual abuse, neglect, discriminatory, abuse or self-harm, inhuman or degrading treatment, through deliberate intent, negligence or ignorance.”(NCSC, 2003) If these standards are not being met, then people have the right to complain with no fear of victimisation or repercussion.
As Marcia Ramsay, Director of Adult Services states ” We are tough on poor practice and use enforcement action when necessary, including closing some services. (As cited on Care Commission.com).
However there are limitations within the Care Commission. In that the care standards are not laws, they are just guidelines that the care commission uses in inspections. Poor practice is not always picked up in care settings when the care commission carries out inspections. What about people who cannot communicate to complain or who might not understand what represents poor practice?
People with learning disabilities face a higher risk of sexual assault, rape and domestic violence than the general population. These crimes are regularly committed in care settings by the very people who are meant to be caring for them. Breaching the persons human right to liberty and security and the right to freedom from exploitation, violence and abuse; (Article 5) (Crime and Abuse, 2007)
The Healthcare Commission reported a case of rape and allegations of sexual assault. The judge described the betrayal of trust when he sentenced Peter Clark to six years in prison. Clark was employed to care for a woman in her 40’s who had severe learning disabilities and a mental age of two years. The sexual abuse carried out by Clark was even more unforgivable as Clark had known that she had already been the victim of sexual abuse by a previous carer. (Healthcare Commission, 2007)
All staff in the care sector are now required to be registered with the Scottish Services Care Council and are unable to work if they are not registered. The Scottish Social Services Council (SSSC) is responsible for registering people who work in the social services and regulating their education and training. Its role is to increase the protection of people who use social services, to raise standards of practice and to increase public confidence in the sector. When a social service worker applies to register with the SSSC, they must agree to abide by the Code of Practice for Social Service Workers, which sets out the conduct expected of social service workers and informs people who use social services and the public about the standards they can expect. The Code supports the human rights of people who use care services. (SSSC,2009)
The SSSC can investigate the conduct of registered social service workers. When an allegation of misconduct comes to the attention of the SSSC, it will consider whether there is an issue about a social service worker’s suitability to remain on the register. If serious misconduct has been found the SSSC publishes information to prevent people deemed unfit to look after vulnerable people from ever gaining employment in another area of the U.K. As The Scottish Social Services Council state in their code of practise “Checking criminal records, relevant registers and indexes and assessing whether people are capable of carrying out the duties of the job they have been selected for before confirming appointments”(SSSC,2009)
However the limitation of the SSSC is that some cases of misconduct might not come to their attention, as people with learning disabilities are dependent on paid or unpaid carers and might not report abuse or misconduct through fear of not receiving care. Also some members of staff might not report misconduct through fear of victimisation or repercussion. It does not prevent abuse, as misconduct can still occur in situations where carers are not registered.
An important step in protecting human rights for people with disabilities is to inform them about the nature of their rights. As people who do not know their rights or understand they have rights are more vulnerable to having them abused and cannot speak up for them selves to complain. (Flowers 1998).
One way of promoting human rights for people with learning disabilities is through advocacy. Which is ‘the representation of service users’ interests in order to improve their situation’ (Thomas and Pierson 1996:11). Advocacy can help can people with learning disabilities be heard by giving a voice to people who would not be able to stand up for themselves. As people with learning disabilities can be ignored if they have difficulty in communicating their views or opinions, leading to them becoming marginalized and socially excluded. If people are powerless at making decisions over what happens in their lives, they can suffer learned helplessness that will impact how they live their lives. Therefore advocacy is a tool than can ensure that people with learning disabilities have a means of gaining the same life opportunities as others in society. The advocate can help the person with learning disabilities achieve equality in society by promoting and helping the person speak up for their human rights.(Thomas, 2003)
However advocacy can have limitations for promoting human rights. Many older people remember being punished if they spoke up for themselves from the past when they were institutionalised and could still scared of speaking up now. Many people also fear services being withdrawn if they try to complain, so might not want to impose. Some people with autistic spectrum disorder do not like interaction and might not talk to an advocate, just to avoid them.
Another way of promoting human rights for people with learning disabilities is to let people take control of their lives by allowing them to make their own choices about how they want to live their lives. As Barber (1996) states that people need to experience feeling in control if they want to achieve a successful outcome in their life. (Thomas, 2003)
A method that allows people with disabilities to achieve equality and lead a fulfilling live is through Personalisation of service provision. ‘Valuing people 2001’ is the Governments strategy for implementing Rights, Independence, Choice and Inclusion through personalisation. By delivering public services in a way that gives people using that service more choice, responsibility and control in relation to the service they receive. Personalisation means thinking about public services and social care in an entirely different way. (SCIE ,2008)
The traditional methods of service provision operated around the individual receiving the service, with health and social care professionals making all the decisions on the type of support the individual received. The traditional model was disempowering to people with learning disabilities as it focused on the persons medical problems, ignoring the qualities of the person as human being. (JFK, 2006)
Personalisation starts with the person rather than the service, reinforcing the idea that the person with learning disabilities knows best. They can be responsible for themselves and make their own decisions about what they require and should be given the information and support to enable them to do so, through direct payments, individual budgets and self directed support. (Stalker and Campbell, 1998)
One of the goals of personalisation is independent living, which means “having choice and control over the assistance and/or equipment needed to go about your daily life having equal access to housing, transport and mobility, health, employment and education and training opportunities” (ODI, 2008)
However there are limitations to personalisation. The philosophy behind personalisation sounds good in theory. However people with learning disabilities have different needs in comparison to other service users such as the elderly or mental health patients. The Government has just used personalisation as a broad term that will fit everyone.
The other problem with personalisation is the time period it takes to implement, in allow everybody to improve his or her life chances through personalisation. As the Government states in the ‘Improving the Life Chances of Disabled People 2005’ that they hoped to achieve pesonalisation for all people in Britain by 2025. (ODI, 2008)
In conclusion people with learning disabilities have historically suffered from social inclusion, discrimination and being marginalised resulting from legislation and policies from the past. However the Human Rights Act 1998 has given people with learning disabilities the right to live as an equal citizen through legislation that entitles them to the right to freedom (Article 8) the right for private and family life (article12) right to protection of property and person (Article 3) and the right to life through healthcare (article 2) Services have come far in enabling people with disabilities to live fulfilling lives. Personalisation has allowed people to make choices and decide which services they would to need to live the life they want. This has given people greater freedom and enabled them to be empowered.
However although everyone is entitled to healthcare in the U.K and it is their right to receive treatment. People with learning disabilities are still being excluded, discriminated and marginalized in this area, with health professional’s breaching human rights of people through lack of knowledge and understanding of learning disabilities and lack of knowledge about legislation.
People with learning disabilities are still being victimized and abused because of their disability leading to vulnerability. The Care Commission has ensured that all cares services are regulated to prevent abuse and ensure human rights are not breached. The Scottish Social Services Council code of conduct allows for human rights, through registering of staff, training and making sure severe case of abuse and misconduct from care staff never happen to people with learning disabilities by gathering formation about offenders to make sure they never work with vulnerable people ever again.
Human rights have come far in enabling people with learning to lead lives as equal citizens giving them dignity, freedom, equality, solidarity, citizen rights and justice. Nevertheless although human rights are the law and must be abided, people with learning disabilities are still having their human rights breached through lack of respect, ignorance and prejudice. Suggesting there is still along way to go before everyone with a learning disability enjoys the life they are entitled to.
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