Being in the institution was bad. I got tied up and locked up. I didn’t have any clothes of my own, and no privacy. We got beat up at times but that wasn’t the worst. The real pain came from being a group. I was never a person. I was part of a group to eat, sleep and everything… it was sad. (As cited on Mencap.org)
Historically people with learning disabilities have suffered disempowerment by being excluded from mainstream society through segregation in large institutions. ( Wolfensberger, 1972) people were dismpowered by having little control over how they lived their lives. Although the Community Care Act 1990 has resulted in the closure and the resettlement of people with learning disabilities, people are still suffering disempowerment through exclusion by not being able to choose how to live their lives (Ramcharan,et al 1997).
Empowerment is: ‘â€¦”concerned with how people may gain collective control over their lives, so as to achieve their interests as a group, and a method by which social workers [and other care providers] seek to enhance the power of people who lack it’ (Thomas and Pierson 1996, p.134).
‘The Same As You? review’ is the Scottish Government’s strategy for learning disability services in Scotland. The review sets out the Scottish Government’s wider policies of social inclusion, equality and fairness to enable changes to happen for the better in the lives of people with learning disabilities. A key area identified within The Same As You? is Person Centred Planning. Person-centred planning means starting with the individual and putting the supports around them that will enable them to have the life that they want.
Person centred planning is a tool that can be used to plan with a person. This can be to help the person think about what is important in their life now and also to think about what what they would like in the future. Planning should include the persons circle of support and involve all the people who are important in the persons life. (Stalker and Campbell, 1998).
The idea behind person central planning was to respond to problems of social exclusion, disempowerment and de-evalution. Person centred planning was developed in the 1980’s by a small number of people including John O’ Brian and Michael Smull. As a way of enabling people with learning disabilities to move out segregated institutions and back into the main community. Person-centred planning is designed specifically to ’empower’ people, to directly support their social inclusion, and to directly challenge devaluation. By looking at what support is needed to allow the person included and involved in the community. (Magito-Mclaughlin et al., 2002).
Person centred approaches offer a different alternative to the traditional model of planning used for service provision. 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. (Sanderson, 2003)
Person centered planning places the individual at the center of the decision making process, allowing family members to become involved in the planning as Joynab, Mohammed’s mother states:
“Person-centred planning has given us hope and a vision for a better future for Mohammed. We feel now we can have a say in how and what service support he receives. We no longer believe that only professionals know best for our son. Mohammed’s faith and cultural needs are recognised and responded to.”(DoH, 2010)
Person centred planning looks at the persons qualities and is a way of listening to what is important in the persons life. People can direct their own services and supports, in a personalised way rather than attempting to fit within pre-existing service systems.
An area where person planning has helped the person by listening to what they want enabling them to direct their services and support is through training and employment. People with learning disabilities have been marginalised from gaining employement, through the employers lack of understanding about learning disabilities and stereotypical beliefs that they are incapable of working. As a mother states “
I have a son who has Down syndrome..I go to the supermarkets and ask if they could try my son outâ€¦I explain that he has Down syndrome, then they change the subject and say they will give me an application form.I explain my son cannot write, and they tell me he cannot get an interview without an application form.Is this a way of eliminating the disabled?” (Anonymous contribution as cited by Williams,2009)
People with learning disabilities benefit from working as it helps them to gain fiancial independence and security, increases their self confidence and skills and allows them to socialise. Todd (2002) demonstrates this in his report ‘planning a new future’ where an agency worked with a young man with autism whose goal in life was to be an airline pilot, even though this goal was unrealistic. The support worker involved in his person-centered plan, suggested and arranged a visit to Heathrow airport once a week. The idea was to find out what interested the young man about being a pilot, was it the flying, planes or uniform? After visiting the airport for a couple of months it became apparent that the baggage carousels captivated him. The young man was then supported to get a part time job as a baggage handler. (Todd, 2002) enabling the person to become part of the community. In a way that values their human rights, gives them independence and choice.
Person centred planning has a particular approach that can be used for different individuals in different situations. The four main tools that can implemented include: McGill Action Planning System (MAPS), this process is a useful tool for gathering information in the early stages of planning, helping to identify the person talents and needs. ELP (Essential Lifestyle Planning) is more commonly used to plan for people who are moving out of instititionalised care. Personal Futures Planning is less service based, tending to be used for building relationships with family, friends and fitting into the wider community. PATHS (Planning Alternative Tomorrows and Hope) is used to develop an action plan for the individual. (Stalker and Campbell, 1998, Sanderson, 2000)
People with learning disabilities can have communication problems and should not be disregarded from having person centred planning for that reason. There are various techniques that can be used allow a person with a learning disability to communicate in their ideas for the plan, such as Makaton, talking mats, sign language and picture banks. (Grove, 2005) the plan can be done any format that is accessible to the person such as a written document, a drawing or mind map with images or an oral plan recorded on to a compact disc. Plans are the updated when the person wishes to make a change or when they have achieved their goal.
Person centred planning is for eveyone, not just for people who can communicate. As it can engage participants personally by allowing them to hear of deeply felt hopes and dreams and fears, even if the person feels they are silly. As the planning process allows the person to break free from the misconceptions and conventions that can harness their future. Some examples of peoples dreams were a young man wanted a trip to Mexico as part of his vision. Another is taking guitar lessons as a way to achieve his goal of being a country and western singer. An older woman, in her plan, decided to retire. Another is taking art classes and learning to paint watercolours. Starting a business, going to college or university, buying a house, these are all things that are possible through person centered planning. (ne-pdd.org)
Person centered planning has helped people achieve empowerment is their choice to form relationships, get married or have children. People with learning disabilities have the same need for love and relationships as do all human beings. However this need is not being met for people with a learning disability. Literature on the subject provides information about sexuality in regards to learning disabilities, however it seems to focus on disability and sexuality from the perspective of it being a problem. (Parritt, 2005.)
This negative view of people with learning disabilities and sexuality stems from the historical perspective of learning disabilities, where people with disabilities were placed in institutions and segregated (Potts and Fido,1991)
This level of control can still be seen today with professional’s and families trying to discourage intimacy and relationships, viewing the person with a disability as vulnerable, seen as the ‘eternal child’ (McCarthy, 1999)
Mrs Susan Hurst and Mr Frank Hurst tell their story of ‘Our Wedding, Our Dream’ where person centred planning enabled them to get married. Mrs Hurst states, “some people felt there wasn’t a need for us to get married but we wanted what every one else hadâ€¦Getting married had always been our dreamâ€¦.” (csrpcp.net)
Mr. and Mrs. Hurst describe how the tools of person centered planning enabled them to identify both their ‘hopes, goals and dreams for the future’ this enabled them both too make all the decisions in planning for their wedding. Mr and Mrs Hurst explain that they even planned their honeymoon and travelled to their honeymoon destination without the aide of support workers, as person centered planning had enabled them to plan ahead of the difficulties that might occur and how the couple would resolve them when on holiday. Without Person centered planning Mr and Mrs Hurst would never have been able to get married or go on honeymoon. Mr and Mrs Hurst felt that person centered planning helped them to achieve their goals enabling them to feel in control of their lives, allowing them to choose their human right to get married and respect for private and family life. (csrpcp.net)
There is legislation that supports the rights of people with learning disabilities to have fulfilling relationships and sex lives if that is their choice. (Article 8) states that every human being has a right to respect for private and family life. The Disability Discrimination Act (1995) gives people the right to access family planning clinics and advice centers. People with learning disabilities should be accepted as people who have the same capacity for loving as others in society.(Lesselliers, 1999)
Loneliness and isolation may occur through the lack of opportunity to have loving relationships. Therefore person centred planning can enable people with learning disabilities to be empowered by allowing them to make these decisions and choosing how they want to live their lives.
person centred planning improves the person quality of life. Increasing the persons right to empowerment through the right to work where they want, where they would like to live and increasing their social network by letting them choose how they would to socialise. (Whitney-Thomas et al., 1998).
Relationships improve for the person at the centre of the planning, as they became more motivated and goal oriented. As the participation process allows friends and family to join in the planning and help the person achieve their goals. Parents also reported that person centred planning had such an impact on their family’s lives, that they choose to become involved in training other families in the importance of person centered planning.
As person centred planning is designed to focus on one person at a time, it increases the potential to broaden opportunities for people with learning disabilities in gaining the life they choose. As Person centred planning allows the person to choose how, when and where they want support or services delivered rather than the standard ‘one size fits all’ approach. (O’Brien & Lovett, 1993).
However there are limitations to person centered planning for people with learning disabilities. Insufficient funding and resources can hinder the planning process persons and their opportunity to achieve their goals, leaving people disillusioned with the process.
Person centered planning requires trained and well equipped staff who are knowledgeable about inclusion, rights of people with learning disabilities and how to help empower people by directing them. As people can lose trust in centered planning if these values are not upheld. (Kinsella 2000),
Person centered planning can take time to achieve targets, it is not suitable for people who require emergency planning where action needs to take place in a few days. The process is not a “quick fix” (O’Brien & Lovett, 1993).
In conclusion people with learning disabilities have suffered from disempowerment in the past as a result of institutionalised care. However person centered planning has enabled people with disabilities to become empowered by allowing them to make their own choices and be fully supported about how they would like to live their life. By allowing people with learning disabilities to choose their right to employment through what job they would like to work, this in turn empowers them by gaining fiancial independence and increased self confidence, as well as learning skills and getting to meet new people. Person centred planning has allowed people to gain their right to family life and marriage, by allowing people to plan their own wedding and honeymoon giving them independence to start married life.
Therefore person centered planning creates positive effects that go beyond effective planning. In that it allows