As Meena has communication difficulties an awareness of the barriers that may restrict her successfully communicating is essential. If Meena is not listened to then any communication holds little value (Thomas and Woods, 2003). If Meena feels she is not being listened then her challenging behaviour may result from her frustration. Meena needs someone to work with her and get to know her way of communicating. If Meena is consulted then she is able to put herself at the centre of any plans regarding her life. Citizen advocacy has a useful role in enabling the voices of those with complex disabilities such as Meena to be heard. (Eustace, 2002)
A shared action plan may be used that will include the contribution of Meena and then who she wishes such as her key worker and her family. (McNally in Gates, 2001). In Meena’s case her family may cause barriers to her gaining her independence and so will need reassurance of her ability to live independently. If the parents are not consulted at all then this may cause a rift between Meena and her family, which may jeopardise her plans. It is hard to go against one’s parents especially so if you have been dependant on them your whole life.
Wamesly (in Swain et al. 1994) stated that family could be a barrier to full citizenship. Dependency is structured through family and can restrict income and movement; in this way care is seen as control (Wamesly, 1994). Meena’s family have her best interests in mind but they are a barrier to her achieving her independence, which is the one thing she wants. It would be very easy to rally to Meena’s side without considering her family but discounting their influence could prove damaging. As Malin (1995) said “Carers have their own concerns and user empowerment should never be seen as a reason for ignoring families.” Tensions will arise family bonds are strong but setting out to work together rather than against each other will help to resolve these tensions (Malin, 1995). Individual planning does call on the person involved to call on the support on those closest to them and for Meena's that is her family.
Meena’s, her family and the staff around her will have different perspectives on how she can achieve her goals and having a forum for views to be shared is needed for them to work together effectively (Malin, 1995). There may well be a conflict between Meena’s’ family’s view that her safety and security is the most important thing whereas Meena may want the chance to take a risk. Meena’s views may well be at risk of being lost so the appointment of a citizen advocate to ensure that she doesn’t get excluded or isolated. (Malin, 1995). Going against the opinions of ones’ family is a daunting task and takes a great deal of courage. There is a danger that Meena may end up gaining independence at the cost of isolation from her family or giving up her dream for fear of upsetting her family.
Communication is vital for any success, Meena’s family have been let down in the past by staff not considering the cultural background and potential language barriers. Meena’s situation is not unusual in a study conducted by Bignall, T and Butt, J (1999) it was found that independence was more limited for Asian women in particular. Isolation because of culture was also an issue that was found apparent. Social events organised often did not take into account certain cultural norms, an event in a bar may not be seen as appropriate for Meena as a young Asian woman on her own so she was not experiencing social inclusion. Many minority ethnic groups were a minority in their school especially if it was a special school removed from their community and there was a reported shortage of Asian role models within the services provided. Meena wants independence but her lack of social interaction outside the family may mean that she finds tasks such as mixing with housemates or colleagues difficult. This may be an issue that needs addressing.
Identity
Part of Meena’s social inclusion is development of her own identity. Enabling people with learning difficulties to tell their own story may help them emerge with a more positive sense of identity (Malin, 1995). Listening to Meena will help professionals reassess the impact their services have on Meena’s life. Using techniques such as a life book will help Meena piece her experiences together (Frost and Taylor 1990 in Malin, 1995) and decide on her aims for the future, as below
Profile
Name
Date of birth
How I describe myself
Important people in my life
My history
Things I am good at
Things I need support with
My interests/likes/dislikes
My goals for the future
Action Plan
Time scale
Progressive Log
Date
Action Taken
Result
Individual Programme Planning
Humphries and Blunden (1987 in Malin, 1995) reported that there were low levels of active participation in IPP meetings and Laws et al. (1988 in Malin, 1995) found that users were excluded from their own meetings! Meena’s family claim to have little involvement in any meetings for Meena mainly due to the fact that language was a barrier, the only person in the family who spoke enough English to cope in these meetings was Meena’s sister who was too young to truly understand what was going on. Finding ways to ensure that people with learning difficulties ands their families have a chance to say what services they feel they want are crucial says Malin (1995). Yet this seems to have failed miserably in Meena’s case.
Meena’s IPP needs to make sure that its main focus is on her and she is being listened to and resulted in action that reflects her aims and priorities. She also needs to have control over the process and is helped prepare for the IPP (Malin, 1995). Meena has relatively little knowledge of the planning process having been passive in all decisions up to now. Meena needs to be able top explore possible options for example moving out. Does she truly realise all the responsibilities this would entail, moving is a stressful experience and moving out the family home is a huge step. She has the basic housework skills but does she know not to let in strange callers? Does she understand that being alone in a house can be quite scary sometimes? Going from a bustling family home to a flat on her own may be quite a shock. It is important that she is made aware of these things because they may end up compromising her independence.
Meena may benefit from the support of a broker, an independent agent that is accountable solely to Meena and her family. They could help Meena decide what support she needs and create a package that suits (Malin, 1995). As an adult with autism Meena may be unable to access local services and are referred to residential services far from home. She requires person centred planning to make it possible for her to exercise her own choice in how her housing and support is provided. (DofH, 2001).
Consulting Meena in this process will help avoid the incident at the college where her behaviour resulted in her being excluded. If Meena is doing something she wants then she won’t get frustrated. There is evidence that at least some of people’s challenging behaviour results from the lack of control people have over their lives (Malin 1995). If Meena is able to assert herself and make her own decisions, say by enrolling on the catering course she wants to do then she need not resort to aggression.
Staffing
Meena needs the right staff to work with her, staff that understand her cultural and communication needs as well as someone who she genuinely gets along with. Supported living may be an option for Meena and if she moves into a group home then it must take her needs into account. Most people get a say on who they live with, people with learning difficulties often do not get this option. Meena’s family are concerned that she is unable to cope on her own and may feel alienated, this is a real concern but sensitive staffing can help the transition into independence. Malin (1995) suggests that people with learning difficulties should have a clear role in selecting and even firing staff. Tension with staff could be a problem considering Meena’s past history of challenging behaviour. It has been said that people with learning difficulties often value the support of professionals but can also feel alienated (Malin, 1995). If a person cannot relate to Meena and her needs then her needs may not be met. Meena should have the right to change her key worker if she feels that tension is a problem, this is an issue that will apply to staff in her college course and staff that may be living with Meena.
Relationships
Meena has lived a considerably sheltered life and her families concern that she may not be able to cope also relates to her naivety in relationships. Independence comes with rights and responsibilities; Meena needs to be aware of possible dangers that she has not come across before. The only people Meena has had around her have been her family, paid staff and other service users; she has had little contact with the wider community. Meeting new people comes with the territory of independence but rights must be balanced with risks says (Hendry et al. 2002). Meena may need support in developing relationships and protection from exploitation. An article in Community Care (Hendry at al. 2002) stated that this issue should be covered in Meena’s care plan and will be covered by a team of Meena’s immediate carers plus a multi-disciplinary team compromising of psychologists, community nurse personal advocate and more. The article also states that this approach means a close scrutiny of risk assessments and aid an appropriate care plan (Hendry et al. 2002). Whilst this a good practice in ensuring that abuse does not occur Meena appears not to feature much, a person without a learning disability will not have a multi-disciplinary team discussing the most private of human life! Meena needs basic knowledge and encouragement to take responsible risks. Life is a learning curve and if full inclusion is to be a part of it then Meena must also learn through experience. It is the responsibility of staff to make sure Meena is aware of risks.
Conclusion
There are many things to consider when helping Meena towards independence and inclusion but it must be remembered that having the opportunity to make informed choices about life is a fundamental right (Thomas and Woods, 2003). Meena needs to be able to make informed decisions and understand her own rights and responsibilities in order for her to achieve her goals.
Word Count 2433
References
BIGNALL, T and BUTT, J (2000) Between Ambition and Achievement. Bristol: Policy Press
DEPARMENT OF HEALTH (March 2001) Valuing People: A new strategy for learning disability for the 21st Century. The Stationary Office
EUSTACE, A (2002) ‘Speaking up’, Community Care Jan 10, 2002 [online at http://www.communitycare.co.uk/ accessed 28/11/03]
GATES, B (ed) (2001) Learning Disabilities. London: Churchill Livingstone
HENDY, S; KNAPPER, J; THORLEY, J and LOW, W (2002) ‘Balancing act’, Community Care May 23 2002 [online at http://www.communitycare.co.uk/ accessed 28/11/03]
MALIN, N (ed) (1995) Services for People with Learning Disabilities. London: Routledge
SWAIN, J; FINKELSTEIN, V; FRENCH, S; and OLIVER, M (1994) Disabling Barriers-Enabling Environments.
London: O.U. Sage Publishing
THOMAS, D and WOODS, H (2003) Working with People with learning Difficulties. London: Jessica Kingsley
