Meena is a 23-year-old Asian woman who currently lives at home with her mother, father, sister and grandmother. She has been identified being on the autistic spectrum and having communication difficulties and challenging behaviour. Meena was educated at a special school for autistic pupils from the age of 5 until 19. At this school she was a minority as none of the staff or pupils were Asian. She currently attends a day centre on weekdays where she takes part in various activities. She enjoys cooking and helps her mother cook at home.
Meena has basic skills in literacy and numeracy but finds abstract concepts hard to understand. She is close to her family especially her sister but finds social interaction outside the immediate family difficult. Meena attended a college course for IT for a while but she did not enjoy this and staff could not “cope” with her challenging behaviour. Meena finds it frustrating being at home and would like to move out and gain some independence, she would also like to go back to college and study catering, a subject in which she is interested.
Meena’s family are anxious that she will not be able to cope living independently and tension is high at home compounding on Meena’s challenging behaviour. Punjabi is the first language of Meena’s family and her parents sometimes find it hard to communicate with staff that works with Meena. The majority of communication happens via Meena’s sister but Meena’s parents have the final say on any decisions made. Programme Meena wants the following Having someone who will listen and understand her and her family. Attending a college course for catering that may lead to a job in that field.
Moving out of the family home to gain some independence. There are many issues that arise in forming a programme that will enable Meena to achieve the above. There are possible risks that will arise and strategies need to be in place to overcome them. These will be discussed below. Advocacy and being listened to Valuing people stated in 2000 that “effective advocacy can transform the lives of people with learning disabilities by enabling them to express their wishes and aspirations and make real choices” Advocacy support can enable Meena to speak up for herself but advocacy, empowerment, participation and choice are not infallible.
Legislation and society can hinder the process of people with learning disabilities being fully accepted (Thomas and Woods, 2003) as DofH (2001 p 44) states “provision of advocacy services is patchy. ” However research (Eustace, 2002) has shown that people that use advocacy services felt empowered and this increased their involvement in individual planning and reviews. This is an important aspect for Meena as what she wants is independence but presently all her decisions are in the hands of her family. 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.