Friday, 20 January 2012

Person Centred Planning: A Queen Hit & Hidden Meanings

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.

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  1. I'm sorry jane that you have to make this difficult decision . I totally agree that us mums know our children inside out, yet to try and tell others about the quirks is neigh on impossible at times. I'm sure you will do the right thing for Chrissy x

  2. Thanks Wendy, I'm confident we'll get there in the end. Got some good people on our side & working closely with us that 'get' Chrissy. Hope that's going to be enough this time! x

  3. I'm dreading this phase of our lives. I'll be watching your journey to learn.

  4. Thanks Jane. Please don't dread it. All our journeys are different. Some special needs adults blossom in good person-centred residential services & colleges. Chrissy has ended up in a therapeutic unit due to her own unique circumstances. It's been a massive roller-coaster ride but we still have wonderful times with her - this weekend & Christmas are examples. Things are improving & we expect this trend to continue now we're finally on the right path.

  5. I shall continue to read and learn from your experience and remember your words of wisdom - thanks Jane.

  6. Thank you Jane. I learn from you mums of younger children too. I wish social networking had been around when Chrissy was little!