in control first phase report 2003-2005

36Testing the 7 stepsThis system of Self-Directed Support was developed and refined in practicein the six pilot sites. The following chapters set out what was learned fromusing the system.In particular, outcomes are presented from an evaluation based around sixkeys to citizenship: self-determination, direction, money, home, support,community life. 2Barbara’s storyBarbara’s sister found that Barbara beingin control made a big difference tothe whole family.On the death of my mother 10 yearsago my sister Barbara, who has DownsSyndrome, moved in with me and Ibecame her carer. Barbara was capableof looking after her personal and everydayneeds by herself.She happily attended a day centre inNorth West London – something mymother would never let her do. Shemade friends and seemed extremelycontent with life. We were also membersof the Special Needs Club attachedto our parish and would go onoutings and meals with them.Six years ago I retired to Southwickin West Sussex and managed to getBarbara into Glebelands Day Centrefor three days per week which gaveme some spare time to myself. Whilstat Glebelands Barbara received twocertificates for Basic Learning Skills.About 3 years ago Barbara startedshowing some changes in her behaviour.She would covet and hide thingsthat were not hers. Post would gomissing. This was the onset of herdementia. Even with the dementiashe continued to attend the daycentre 3 days per week. She enjoyedthe company, cooking, needleworkand art.In June 2004, just around her 60thbirthday, Barbara was no longer willingto get on the community bus to goto Glebelands, did not want to use thetoilet and refused to do other thingsthat she would normally do – like goingout. I started to take Barbara tothe centre in the car. When I collectedher in the afternoons I found her miserableand detached from the crowd- where normally she would be in themidst of it all!Having Barbara home all day everyday became very restricting for meand to be honest I felt that I wouldnot be able to cope with her and normalfamily life with my children andgrandchildren.With the help of my social workerBarbara not only got the attention ofa very good occupational therapist,who visited weekly and started projectswith her that we and her carers,are continuing today. I was also givena few hours per week respite whichhelped me to charge my batteries. Myhours were increased to 7 per week– again a little extra freedom but notnearly enough when the task in handis so very demanding.Then came in Control. I was advisedend August early September 2004 thatI was to receive a budget of 23,500per year. In order to get this money Ineeded to write an in-depth SupportPlan stating exactly who Barbara was,what her needs were and how I wasgoing to use the money. This SupportPlan is being updated so that eachA report on in Control’s first phase 2003-2005