ISSUES OF DIVERSITY, CULTURE AND THE NEEDS OF OLDER PEOPLE WITH LEARNING DISABILITIES
‘People with learning disabilities from minority ethnic communities are at particular risk of discrimination in gaining access to appropriate healthcare .... Staff who understand the values and concerns of minority ethnic communities and who can communicate effectively with them have an important role to play in ensuring that minority ethnic communities can access the healthcare they need.’
(Department of Health 2001a, pp. 62–3)
The Government clearly outlines the necessity to profile cultural considerations in Valuing People (Department of Health 2001a). It further commissioned a report, Learning Difficulties and Ethnicity, in 2001, to specifically explore the needs of black and minority ethnic communities.
Comment is often heard from individuals and their families stating that they are doubly discriminated against, both having a learning disability and coming from a black or minority ethnic community:
‘The simultaneous disadvantage experienced by individuals in relation to race, disability and gender has been termed “double disadvantage” or “triple jeopardy” in some research studies (Baxter et al. 1990; Butt and Mirza 1996).’
(Mir & Raghavan, cited in Grant et al. 2005)
When working with adults with learning disabilities, an obligation to provide culturally sensitive care is required. To do this, we have to develop our knowledge base and awareness of issues of diversity and how they impact on people within their current context.
Gender considerations, for example, need to be considered, as many supported living environments provide a service for both men and women. The staff complement within these establishments employs both men and women. However, in some Asian communities, such mixed-gender environments are at odds with cultural values and beliefs (Shah 1992). People with learning disabilities may be limited in their abilities to express themselves as cultural beings. The need to be informed in order to provide appropriate opportunities for this expression is paramount. Being familiar with cultural heritage, religious beliefs and value bases will enhance the ability to explore creative ways in which to ensure that these aspects of a person’s life are highlighted.
The use of interpreters, for example, is a practical way of communicating with people for whom English is not their first language. However, this does not absolve you as a carer from increasing your awareness and appreciation of culturally specific issues for the people with whom you work. Assumptions that interpreters or people who share a common cultural heritage will work more effectively with a person with a learning disability may not always be valid or be the person’s preferred option. Noting issues of diversity within black and ethnic minority communities themselves can identify conflicts where the life experience of the minority ethnic group carer may have little in common with the person with whom s/he is working. The key is partnership, working with individuals, families and other support networks, in line with the recommendations of PCP – ensuring that people with learning disabilities have access to information presented in a format that they can relate to. For example, using pictures to support the written word, supplementing written or pictorial information with personal contact and discussion, and ensuring that information is delivered in the appropriate language/dialect can all help to increase opportunities.
It is also important to be aware of the ‘broader picture’, as difficulties are not only related to language information or access barriers, but may also relate to a care system structured to fi t within Western value structures, thus creating a mismatch with other cultures and belief systems (Payne 2005). The challenge is to ensure that care is delivered in a culturally sensitive, flexible and adaptable way in partnership with adults with learning disabilities.
The ‘double’ discrimination noted earlier also reverberates in thinking of the needs of older people with learning disabilities, who, in themselves, can be viewed as a further ‘minority’ sector within an already disadvantaged group of people. Older people within society as a whole have experienced discrimination in relation to lack of access to services or support, and in being devalued in terms of their contribution to society.
The life expectancy of adults with learning disabilities has increased, to be very much in line with their contemporaries (Bigby, in Grant et al. 2005). Their individual needs are directly related to their life experiences, just as they would be for anyone else. However, in exploring this, it becomes evident that life experiences of people with learning disabilities may differ from those of older people within the general population. This will influence their needs and the role that you will undertake in supporting them.
Deterioration in both physiological and mental health can be a feature of older age. Some conditions associated with age can be more prevalent for people with learning disabilities; adults with Down’s syndrome, cardiovascular disease and problems with thyroid function, for example, have some potential physiological health implications, as well as a higher risk of early-onset dementia or Alzheimer’s disease (Moss & Lee, in Thompson & Pickering 2001). As carers and students involved in supporting people, you need to be aware of this potential, and ensure that you are informed of the signs and symptoms to look for, and from whom to seek appropriate help and support for the individual.
There also appears to be an assumption in society that older people suddenly change their interests with the onset of progressing years; it is important, therefore, to safeguard older people’s rights to participate in society from a person-centered perspective. This involves allowing them to make their choices and decisions, rather than assuming that particular activities will be of interest simply because the person is older. In doing this, attention needs to be given to ensure that appropriate resources are made available for individuals to continue to lead expressive lives, despite the onset of older age. Older people bring with them their vast knowledge and experience of life, and can be an invaluable source of information and support for others.
Student nurses have reflected their interest in talking to older people with learning disabilities who, having lived a significant portion of their lives in institutional settings, provide an invaluable insight into the changes and progression of services and the need for us to be vigilant in continuing such developments. Regardless of age or disability, the needs, wants, desires, dreams and expectations of each person must be considered on an individual basis. There is a variety of ‘tools’ which enable us to support adults with learning disabilities to take control of their own lives and ensure that they are fulfilled.
The next section will explore the application of empowerment, advocacy and PCA to providing support to individuals and how these can enable adults with learning disabilities to experience opportunities for greater choice, expression of rights and participation in the planning of their own lives.
Case study
Jennifer Carter is a 20-year-old white woman who lives at home with her parents, Elisabeth and John, and her younger brother, Ben, aged 17 years.
Jennifer has a learning disability and epilepsy, although this is well controlled with medication.
Elisabeth and John describe themselves as caring but over-protective parents and have always been reluctant to allow Jennifer too much independence, as they are concerned for her safety.
Jennifer states that she has a good relationship with Ben, but is often angry with him and her parents, as Ben gets to go out freely whilst she feels curtailed by her parents and their concerns regarding her health issues.
Jennifer attends college three days a week and is undertaking a cookery course. She would like to get a job in the catering industry, and has recently seen an advert for a part-time job in the college cafeteria.
Jennifer has regular visits from a community learning disability nurse to monitor her epilepsy, as well as infrequent visits from a social worker when required. The social worker supported Jennifer to access the college.
Recently, at a review meeting, Jennifer asked the social worker whether she would help her to apply for a job. Elisabeth and John were surprised and a little angry with Jennifer, as she had not told her family that she wished to apply for the job and this was the first time they were aware of it.
John explained that Jennifer could not possibly hold down a job. Jennifer appeared frustrated and told her father that he was unfair, as Ben was able to do other things. Jennifer explained that she wished to leave home and lead her own life.
Jennifer’s parents were hurt and surprised at this ‘outburst’. However, the social worker explained that Jennifer had the right to express her needs and suggested that they arrange a PCP meeting to explore Jennifer’s wishes. Her parents reluctantly agreed.
Prior to the meeting, the social worker and community nurse met with Jennifer to discuss her concerns and wishes, and seek her advice on how she would like the meeting to be conducted, where it should be held, who should be present and what the agenda for discussion should be. Jennifer was advised to have an independent advocate present at the meeting. It was explained that this could be a person that Jennifer knew or could be from one of the local advocacy support groups. Jennifer opted for an independent person and a meeting was arranged between Jennifer and Chris tine, from the local advocacy support group.
During the meeting, the family found it difficult to support some of Jennifer’s wishes; however, Jennifer was clear that she wanted more independence. A person-centered plan was drawn up, identifying Jennifer’s needs and wishes and noting her parents’ concerns. Christine was able to provide support for Jennifer, which she found invaluable, as it had been difficult to challenge her parents, to whom she was so close.
Initially, Jennifer moved to an independent living situation, but found this too isolating. She moved back with her parents, but, six months later, Jennifer moved to a supported housing project, living independently with a 24-hour support worker contact system. This reassured her parents, and Jennifer was pleased with her newly found independence. She applied for the job, but was unsuccessful, but is hopeful that other opportunities will come up. She has joined a club and has made some new friends. Her parents are still concerned for Jennifer, but have realized that she needed to have more choice and control in her life. Her mother reflected that, surprisingly, this has been positive for them, as they feel less concern for the future as they grow older and may be in a position of being unable to care for Jennifer. Jennifer has maintained her links with Christine, and is now actively involved in the advocacy group herself, enabling other people with learning disabilities to be empowered to advocate on their own behalf and make choices in their lives.
Jennifer’s situation could be described as having a ‘happy ending’. However, if we consider this from a non-disabled person’s viewpoint, a similar struggle may exist, but be accompanied by a sense of acceptance of the ‘empty nest syndrome’ (Seligman & Darling 1997). For many parents, having a child with a learning disability can be associated with concern about the future – what contribution will their child make, or be able to make, and who will care for him/her when they are unable to? A vast number of factors will influence this: degree of disability, family support mechanisms, and their own resilience. Often, parents struggle to obtain appropriate services to support their child and his/her needs. Such struggles and concerns can require a great deal of energy and time and be all-consuming. Though parents may wish for their child to be independent, the expectation can be changed and/or challenged by the child’s disability needs.
Jennifer’s parents may have wanted her to have independence but may have become used to being the focal carers. Jennifer continued to need her parents’ care and support but also needed her own space and opportunity for self-expression.
It is important to ensure that cultural sensitivity is taken into account when considering independence or any other aspect of an individual’s life; in some cultures, for example, adult children remaining in the parental home is accepted or, in some cases, expected, whether they have a disability or not (Seligman & Darling 1997).
It is also important to note that in the example above, Jennifer had the ability to live more independently and was able to verbally express her wishes and participate actively in her life development and choices. For people with more severe or profound disabilities, the choices may be different and family support maintained for much longer. Parents have reflected the difficulty in facing the future in ‘handing over’ care to someone else.
The concepts of empowerment and advocacy noted in the case study are equally applicable to all people, regardless of disability, yet the manner in which people are empowered or enabled to advocate for themselves will inevitably be influenced by their abilities. Empowerment principles argue that knowledge comes from individuals and we have to use their knowledge to enable them to live what they perceive as fulfilled lives (Payne 2005). Considering that many of the people with whom you may work will have been marginalized, discriminated against and/or devalued, it is vitally important that you respect the fact that their experience of their own lives makes them the experts; only they can fully understand their experiences and wishes, and you must respect, value and support this expert view. It is important to keep in mind that advocacy is a vehicle through which a person can be empowered.
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