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THE BUTTERFLY UTERFLY STORY Being a full time parent/carer is a demanding role and when the opportunity arises for a short break it is often welcomed. Amy, the mother of Danielle, both living in East Renfrewshire have for many years availed of what could be termed as traditional respite. For a maximum of 56 nights a year Danielle could go to a residential care unit while her mum had some time to rest and relax. This rest time was important to Amy as she is not only the main carer for Danielle, but often works long hours and suffers from poor health. Amy and Danielle both knew that the residential respite was not the perfect solution to providing a break. Danielle didn’t really enjoy going to respite and at times dreaded it. Amy was often worried or anxious at seeing her daughter’s unhappiness and found it difficult to enjoy her rest time. However, things were about to change. Danielle’s social worker approached Amy at the beginning of the year and asked Amy if she would like to attend a meeting where they would be discussing alternatives to respite. Amy agreed to attend but was very unclear about what to expect. In fact Amy’s first instinct was that the local authority wanted to save money by providing home support instead of residential support and this caused her concern. Amy went to the first few meetings and was surprised to find herself on a steering group for East Renfrewshire Council whose aim was to promote more independence and control for families by planning for their own alternative forms of respite. Initially the steering group wanted to identify 10 families that were willing to think about the respite they received and see if there was anything they wanted to change. The families would then be offered support to plan their own respite and finally East Renfrewshire would find a way to help the families work out an approach for the plan to be fulfilled. Amy thought that as she was on the steering group she would not be able to be 1 of the 10 families but was pleased and apprehensive to realise that she could. And so Amy and Danielle embarked on an unknown journey….. The first step was to provide Amy with information about how much the current respite cost. The amount of almost £1000 per week shocked Amy. With the clear understanding that no additional money could be used to provide respite and the money could not be used to pay close family members living in the same house for support the planning began. The planning then looked at what Danielle and Amy liked and disliked about the current respite. Amy understood that Danielle was not 100% happy with respite but was not prepared for the very negative feelings that her daughter shared through the planning. Amy explains, “I felt terrible that I had put Danielle through the last few years of respite. It was like giving away someone that you love, I was going away for a nice time and Danielle was going to a place that she hated.” These were some of the things that Danielle expressed about the short falls of respite on the first meeting: • I hate putting names on my clothes – like a baby • It is upsetting when there is too much noise • Respite is a busy place and often there is no time for me • There was a great lack of privacy and despite being asked to knock the door before coming in they often didn’t • You can’t book respite when friends will be there so it is hard to make new friends or stay in contact with them As part of the planning Amy was encouraged to involve others who could help her make plans for the future by giving support, advice, help and ideas. The very thought of asking others for help made Amy very apprehensive. Amy and Danielle are very private people, they kept themselves to themselves and never asked others for help. Amy said, “I had doubts if there was anyone else who would help.” Without putting Amy under pressure she was asked to think about this issue and was given a list of possible questions that others Amy be asked if she chose to include them in the planning meetings. Just a few weeks later the next planning meeting was held and there were 6 people who had come along to offer their help. Many others who were not able to attend had filled in the answers to Amy’s questions and returned them as their contribution for the meeting. Amy was “surprised others took an interest and gave their time freely” which she appreciated very much. The planning meeting was filled with interesting and exciting ideas of what Danielle could do for her own personal form of respite and at the end everyone happily signed up to going away and finding out information, costs, travel arrangements and possible people who could provide support to Danielle when Amy was having her break. Quickly the information was brought back to the following meeting, with everyone having done as they said they would. The best ideas and possibilities were highlighted and the booking and coordinating of holidays and concerts began which was undertaken by Amy. This was a difficult, time consuming and costly job. Due to the volume of ideas and trips to be paid there was a lot to organise and initially Amy paid for all the trips herself. It was not anticipated how time consuming and how much hard work this part of the planning would be and it was only Amy’s own determination and hard work that achieved the fantastic results. Finally a summary of the trips that had been planned were recorded with a breakdown of the costs for the social worker to approve and invoices were made for the money that had been spent to be reimbursed to Amy. At this point the majority of the planning had been done and the alternatives to respite were starting to become a reality. Danielle has been on her first holiday, she no longer talks about respite! Danielle had a dream to have a holiday in Ireland, visit Daniel O’ Donnell’s hotel in Donegal and see him in concert while she was there. This is exactly what has just happened. Danielle was able to go with an extended family member who provided support to Danielle and had their travel and expenses meet but were not paid for the hours of support provided. Danielle talks about her experience in Ireland, “I enjoyed Ireland, and have photos of my holiday. Daniel O’ Donnell – he’s a babe, tall, dark handsome and tidy!” The person who supported Danielle privately put in a request for her and this was definitely a high light for Danielle who said “I got a request and he sang to me but I can’t remember the song” obviously lost in the moment. Danielle also got to meet Daniel but wants to keep those moments private!! Danielle also said “the hotel was spotless with no smells (of incontinence) and everyone was kind. The person who supported Danielle was described as great company, had a great personality and was affectionate who made Danielle laugh all the time. In fact the holiday was such a success Danielle has plans to return in September. Danielle has further plans to go to Italy for a week with her own support, she is going to Portugal as part of a family holiday but with her own support, and will be going to some concerts as Danielle’s greatest love is her music. Planning had been frustrating at times for Danielle. There had lots of talking, planning, phoning, and preparations and although this was exciting it also made Danielle impatient who wanted things to happen a lot faster. What the planning did do was to convince Danielle that she would never go back to the traditional respite. There had been one further break planned for August but Danielle point blank refused to go and alternatives were made for a break that Danielle would prefer with support that she has chosen. When Danielle was asked recently about her old respite she said “been rubbish place, No way I’m going back, definitely. I don’t have to do things I don’t like anymore” When Amy was asked about her experience she said, “For the first time Danielle went away with a smile from ear to ear on her face. It made it all worth while. Danielle is 100% happier, likes holidays which she and I never enjoyed before because we both wanted to do different things. We can now book our holidays around what we want, not around when respite is available which was often when I was at work and so I didn’t get a break.” Amy’s dream had also come true. Amy always said if she won the lottery she would use the money for Danielle to go on holiday with her own support. This project that East Renfrewshire had set up had enabled that to happen by allowing the money that was already being spent to be used flexibly. Amy summed up her feelings about the changes this has made to Danielle, “Danielle is more out going, confident, speaking more freely. Danielle is positive about the future, voicing opinions, making suggestions, blossomed. The only way I can put it is a new Danielle emerges, from a caterpillar into a beautiful butterfly” Danielle and Amy are already planning for next year… Despite being a very private family Amy and Danielle agreed to share their story hoping that it would help others to understand the important work that East Renfrewshire are trying to do and to let other families know that change and better services were possible. Respectfully, Amy and Danielle’s names have been changed with gratitude for sharing their personal experiences.
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