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‘To what extent are disabled adults empowered to determine their own needs and choose their own support services? Firstly this assignment looks at defining disability and the introduction of empowerment within the disabled community. It will consider the situation as it is now and where the future lies for disabled adults.
There are many ways to define disability but the United Nations definition of disability seems to be a more generalised definition
“Impairment: Any loss of abnormality of psychological or anatomical structure or function.
Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal, depending on age, sex, social and cultural factors, for that individual” (cited by Kaplan, 2012, [online]).
Since the 1940s there have been dramatic political and policy innovations focused on the disabled population, these can be seen to rise from the creation of the British welfare state. The shift from institutionalising and controlling people with disabilities, to empowering individuals who are living with disabilities, was more noticeable in the later part of the twentieth century with the formation of the Centre for Independent Living (CIL) in the 1980s. This was an organisation run and controlled by disabled people; it focused on supporting disabled people in taking greater control of their lives and in choosing the services that they used (Glasby, & Littlechild, 2009, p.12). The CIL developed into the more recent National Centre for Independent Living (NCIL). As from the beginning the concept of personal assistants (PAs) working under the control of and providing disabled adults with support in education and other areas of their life, remained a central feature of independent living.
Independent living is the concept of the empowerment of disabled people. Empowerment is a process by which people gain greater control over decisions and actions affecting their health and welfare. The term empowerment describes a process were individuals and groups can express their needs and concerns and create strategies for involvement in decision making and achieving political, social and cultural action to meet those needs (Nutbeam, 1998, p.354).
The concept of empowerment paved the way for the direct payments agenda, which was intended to allow service users to have a greater choice (Glasby, & Littlechild, 2009, p.12). Prior to direct payments, receiving personal assistance for the disabled was obtained through the Independent Living Fund (ILF). The ILF marked the start of empowering disabled people by taking away the control of others and allowing disabled people to exercise choice by providing money. This helped in avoiding going into residential care and also allowing disabled people to determine the help they required and how and when they required it (Kestenbaum, 1993 p.35).
Even though there were potential advantages for empowering disabled people with the ILF, direct payments were illegal under the 1948 Community Care Act. This made the passage of the 1996 Community Care (Direct Payments) Act key to empowering disabled individuals in purchasing their own care (Glasby, & Littlechild, 2009). So the turn of the 21st century has brought many new hopes and with the emergence of disabled peoples organisations; Britain has seen policy change focusing on greater rights, choice and control for disabled people. “Changes in social attitudes, environmental accessibility, new technologies, user-controlled support services and rights based legislation have all impacted in various ways upon peoples experience of family, education and work” (cited by Priestly & Shah 2010, p.181).
Moving into the 21st century and with direct payments, it has shown great promise for empowering disabled adults, with the choice of care providers chosen by the service user. This progress can be seen through the experience of a disabled service user Lorraine Cherry, 40, from Peterborough. Lorraine receives domiciliary care from local services and she started to live independently in 2002. Lorraine made changes to her care after the introduction of the Independent Living Support Service (ILSS) in her area. Under the ILSS service users can choose from many approved providers who are assessed and regulated by local authorities. She explained how she was not getting on with one of her morning carers and that they did not provide the service she required. Lorraine spoke to social services and explained her problems and that she wanted her evening care provider to provide all her care needs day and night. This was achieved within a week. Lorraine believed that the ILSS offered her more choice and was a more efficient service than she was previously used to. She previously was unaware of having the option to change provider and the speed in which it could be achieved (Samuel, 2009, p.26).
With this growing personal choice for disabled people, what are the challenges faced by service users choosing to make independent choices. Service users are now faced with the challenge of assessing their own risks and safeguarding issues when making independent decisions this can be seen in the story of a young disabled adult Andy.
Andy finished his college and wanted to pursue his desire of working with cars. Andy found a course at a College in Cumbria where he lived, based on his love of cars. People around Andy worried he might not cope with the course, managing money, meals etc. The main worry was that Andy would be vulnerable to abuse or exploitation (SCIE, 2011, [Online]).
“Andy got a personal budget and wrote a support plan. This made it clear that the course was so important that the risks were worth it. So the money from social services enabled him to go to college. Andy used the support of the college’s pastoral care team, and made friends as any other young person would do. However, during his first months at college, Andy lost several hundred pounds, and his PSP games console. He thought these were ‘loans’ to people he could trust. He got support to speak to the police and his supporters helped him to learn from this experience so he wouldn’t be exploited again. Andy successfully finished his course and now has a part-time job working voluntarily at Halfords and a paid part-time job as a project coordinator for People First Cumbria” (cited by SCIE, 2011, [Online]).
This story from Andy shows that even though independent living is good thing it can leave a service user exposed to abuse and exploitation, but is this not the same for any able person because there is always a risk of people being taken advantage of by others. The extent of empowering disabled adults seems to be putting disabled adults on par to able adults when it comes to choice allowing life experience and taking risks. Andy’s comments from his experience were interesting he said “if he had been completely protected from risk, he would never have learned about trust and gained the confidence to deal with people trying to take advantage. ‘People learn by making mistakes. I needed to make mistakes too so I could learn” (cited by SCIE, 2011, [Online]). This statement shows how a positive risk can have benefits in developing life skills necessary for independent living and also highlights how far empowering personal choice has come, which based on framework is implemented within support plans as enabled risk.
Andy’s story shows that support plans need to be created with service user input, but this also outlines the risk of abuse and exploitation. With the support plan in place it will tackle most risks and weigh up positive risk, this creates a more person centered approach empowering the service user to make personal choices that suits their personal needs.
So looking what future plans are to be implemented and were does independent living sit at the moment. Sue Bott from the NCIL refers to the current government stance towards independent living.
“We have moved on a considerable way over the years in government understanding of independent living. We are happy with the progress that has been made, but where we have concerns is on making the understanding of independent living a reality across all government departments. Our feeling is that there is a substantial amount of understanding but perhaps there could be more joined-up thinking on independent living that encompasses the whole of a person’s life, rather than just part of it. We feel that where the Government are at the moment is that independent living is often considered to be a matter for one particular department or another, whereas we contend that independent living should concern the whole of Government”(cited by Bott, 2011, p.3).
Over the last thirty years there has been a big drive by disabled societal movements which has pushed governments for policy change to promote independent living and empowering individuals to the extent of many individuals being able to make the most basic and complex life choices. But looking at the current austerity measures implemented by the current coalition government will this remain? The disabled community sits in the welfare system and it is being targeted for cuts to entitlements and more stringent eligibility criteria. With the cuts to the public sector as well this would have a big impact on services used by the disabled community. According to studies done by charities Demo and Scope estimated that disabled people in Britain would lose £9 billion in welfare support in the next five years (Grant & Wood, 2012, [Online]).
In light of this grim outlook for the disabled community and future cuts how has new government policy affected direct payments? Well research into this area has been conducted as the government has urged local authorities to double the amount of people eligible to receive personal budgets by 2013. This has caused a reaction from social workers who feel the push for targets is resulting in managed or virtual budgets being created more often. Managed and virtual budgets are not necessarily a bad thing with some disabled adults happy not handling money, but this is supposed to be an option. The Association of Directors of Adult Social Services (ADASS) surveyed 132 local authorities and found that budgets are being created by working out the value of services and taking away the freedom of choice (Brindle, 2011 [Online]).
So the future looks a little misty for the disabled community with their independence being threatened by government cuts. So maybe the extent of empowering the disabled community is maybe viewed as too much of an expense and control measures may be applied once again, to control public expenditure.
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