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									                          THE BUTTERFLY

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

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

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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