Showing posts with label PCP. Show all posts
Showing posts with label PCP. Show all posts

Tuesday, 3 July 2012

Advocacy & Learning Disabilities: Special Saturday

Going with this week's Special Saturday theme - sharing my life with Chrissy has made me acutely aware of the unique role advocacy plays in supporting individuals with learning disabilities.

You may think that a person with learning disabilities who has a pro-active parent and/or care manager (& many don’t) may not need an advocate - but an advocate is uniquely placed to act with minimal conflict of interest. This conflict of interest issue is key to advocacy – in any situation other people will have interests that will conflict or compete with the interests of the person with a disability. Taking independence skills as an example - a parent may be over-protective and make choices for the person with learning disabilities, stifling their ability to gain independence skills. Due to funding constraints, a care manager may be reluctant to provide the necessary care support for them to gain independence skills. The vulnerable person’s relationship with an advocate is different to those with relatives or professionals in that it is a partnership built on trust and confidentiality. By identifying and minimilising any of their own interests & needs that may conflict with the person's they're supporting, an advocate supports them to put their choices into effect. The advocate does not make choices for them or have a vested interest in outcomes of granting their choices.

Being independent, an advocate is in a unique position to identify what the person’s needs are and to and try to understand what it is like to be in their shoes. An advocate’s objectivity may enable them to focus on key issues in sometimes complex and sensitive situations and take action on the vulnerable person’s behalf. Their unique awareness of the person's wishes and choices may enable them to take the initiative by creating a sense of urgency and challenging other professionals.

People with a learning disability are often portrayed as less than human & their disability can lead to low status & a devalued role in society. They may experience discrimination, neglect, exploitation or abuse. Their human and legal rights may be denied, and even where rights exist, access to ways of enforcing them may be restricted. An advocate has a unique role in supporting the person with disabilities to access and exercise these rights.

Advocacy can also play a vital role if people with learning disabilities are confronted with situations they find difficult or they feel they are not being listened to. An advocate’s role may entail supporting their advocacy partner to make choices and express their views at meetings with professionals. It could mean being on the person’s side in situations where they could be taken advantage of, or fighting for the person’s right to lead a more fulfilling life.

As well as representing a person’s interests, an effective advocate may make information, advice and support services more accessible, and lead to access to different forms of advocacy, such as a solicitor or Citizens Advice Bureau. For example, the local CAB can support the individual to get the correct benefits or the Disability Law Service may be able to advise on legal situations.

To carry out their role successfully, an advocate must understand and be committed to the values and principles of advocacy, that regardless of whether or not we have a disability, we all have the same value and rights, and should be given the same opportunities to fulfil our potential for growth and learning and lead purposeful lives.

Finally, by offering conflict-free support and being on the person’s side, an advocate may enable people with learning disabilities to transform their lives by ‘exercising choice and control,’ as recognised by the Government White Paper of 2001, ‘Valuing People.’ Ultimately, advocacy serves to promote the welfare, wellbeing and social inclusion of people with learning disabilities, to protect their human and legal rights, combat discrimination, and, overall, to improve their quality of life.


I have written this post as part of #Specialsaturday. Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday; following on twitter - @Specialsat and retweeting hashtag - #specialsaturday; reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

I am also a SWAN UK (Syndromes without a Name) blogger this this is part of our #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/

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Friday, 20 January 2012

Person Centred Planning

December 2011: Note rolled up sleeves - one of Chrissy's rituals

Person centred planning (PCP) is a way to support people with learning disabilities to plan how they would like to live their life as fully & independently as possible. Anyone with a learning disability can have a PCP, even if their communication is limited, as PCP is done in consultation with people who love them and know them well.

Chrissy has been in a therapeutic unit for two years and, although she's not yet ready to move on, we need to start planning her future now. The Challenging Behaviour Foundation advised that this can take 12-18 months for someone with such complex needs.

A PCP professional visited me on Wednesday and showed me an example PCP. It included gems such as 'When I sing Bohemian Rapsody watch out. I'm not singing happily - it's a sign that I'm about to lose control and I may throw something at you!'

With Chrissy, I follow my instincts, and take so many of her quirks & rituals for granted that it's difficult to convey her support needs to someone else. However, seeing the colourful detail in the example opened the flood gates. I found myself able to take the PCP professional step-by-step through Chrissy's daily routines. I explained that when Chrissy comes downstairs for breakfast she must have the larder and kitchen doors shut, lights switched on, the area around her chair cleared of any objects that she deems shouldn't be there, her two favourite drinks with two straws, a carrier bag with handles tied in a bow containing her chocolate mousse and a banana......

After all that and more, she will only eat her egg on toast, cut up, with two splodges of tomato sauce, when she's good and ready, usually when it's stone cold!

Explaining the detail of Chrissy's daily routines also helped me to gain more insights into her support needs, which I can pass on to professional carers. For example, I instinctively know when to make myself 'invisible' for Chrissy to adjust to transitions and self-calm. It may mean removing myself from view and watching silently from a safe distance, or simply avoiding eye contact and using minimal communication. When Chrissy arrives for her weekly visits home, I try to get her coat off and settle her into my routine, but the penny's dropped that she needs initial time to herself to wander freely from room to room to adjust to her new territory. She will eventually approach me and say something like: 'Mummy, I want to go on my computer.'

PCP reminded me how important carefully managed approaches are to support Chrissy effectively. The daily management aspects of her needs should be sufficiently met in a single service unit close to her family with a team of carers that know her well - but there are other considerations. Key is the proximity, skill and responsiveness of a multi-disciplinary clinical team. Failings in this area contributed to the breakdown of two residential placements, which caused her untold trauma. When it comes to 'what next?' for Chrissy, we must get it right this time.




Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/