Supporting people with Cri du Chat Syndrome and their families

Cicely's Story

by Caspar Hull on 03 December 2014

Transition trials and tribulations

Cicely turned 18 in October and with that she is now an adult, and as such passes from children services to adult. Transition!!!

Cicely has been a ‘looked after person’ since the age of 12, living in a lovely residential home – Haresfield - a few miles from us in Lacock, Wiltshire (of Harry Potter fame). The home is run by Quarriers, a Scottish Quaker charity that runs homes for people with special needs. She is voluntarily looked after by the state under section 40 as a LAP (looked after person) whereby we (her parents) have full control over all her needs; medical, educational and social.

We have been preparing for transition over the last 16 months with Cicely’s social worker, looking into the options of life after Haresfield - considering residential care or the council’s Social Services preference of community-based housing using her care plan budget package (stipulated by her needs) and housing benefits etc.

In this latter option, Cicely would share with another one or two people with similar problems. For us, this posed a problem - how we could meet and vet these potential housemates that she would live with for the next 50 years? Well, over a 16 month period we had one pub visit with a lad who was suitable but not someone that Cicely noticed nor bonded with. Other suitable housemates were considered but the difficultly of meeting them was compounded by privacy and confidentiality laws which made it interminably long to set up any meetings…

So we went out looking for alternative placements and the charities that run them. We found a cul-de-sac of residential houses and community for people with special needs. However, it only housed out of county residents. We were told in no uncertain terms NO; if she was accepted, a precedent could be cited, thus other existing Wiltshire residents could also claim and Wiltshire county council would have to pay for them too.

Within the cul-de-sac we identified a residential bungalow with five rooms; three already occupied and the fourth arriving soon, all of whom we perceived as suitable (she had actually been at school with two of them). The Council/SS said no way, again wanting ‘no to residential, only assisted living’. They also cited that their occupational therapist had assessed her needs and that standard housing was suitable. We asked for a copy of the report and found that it stated (after a two hour visit and observation) that Cicely could manage stairs! toilet herself! no need for a downstairs loo! could live in a normal house, no need for a garden, hills and slopes OK, it downgraded all her emotional needs that had been set out in a multi-agency LAP report and MY PLAN made up by 10 other professionals, which the council/SS thus ignored as their agency OT was sufficient and overriding. The OT even tried to override Cicely’s orthopaedic surgeon’s report of her hip surgeries (8) and spinal fusion concerns for future disabilities certainties.

So we put on trench mentality, took up an advocate, investigated specialist solicitors, and asked for an emergency multi-agency meeting with the council before her 18th birthday to put forward a more realistic case of her needs. They ignored this. We made an official complaint to the council and got a written reply the next day which did not address the request for a meeting. So our advocate called the head council honcho and within half an hour we had a meeting booked for the day before her 18th birthday (five days away).

We asked her surgeons for new reports, her community special needs nurse, her carers, her school carers, the new residential home’s mission statement and strategy, and our own worries and critique of the OTs report highlighting its inaccuracies which were emailed to the head of SS over the weekend. By the Monday lunchtime (Tuesday lunchtime meeting) we were rung by the SS man that they had reassessed her needs and accepted that the residential home could provide her inclusive needs and care in the community.

A relief but also a NEW worry; how is Cicely going to cope with this transition? Now we have to move her! The SS rang and said Cicely could move in two weeks. We disagreed with this timeframe as the house was settling in another new resident, so we requested a month. All interested parties were asked to a meeting (oops, they forgot to ask the residential home), and we devised a month of visits for Cicely accompanied by parents and carers, progressively getting longer, and even using school/college transport to take her and ending up with an overnight stay.

I went with Cicely this week and she was nervous and unsettled, and demonstrated her self-injurious behavior, but distraction methods helped as did the promise and use of their hot tub! The hot tub has a sliding roof and the residents watched the November 5th fireworks in it, warm as toast.

Cicely should move - depending on her acceptance - by the weekend of 6th December to a bungalow with a hot tub….everyday!

All of this has been achieved by being vigilant and seeing all the reports that the authorities make judgments on, and correcting any inaccuracies or tightening up loosely worded statements.

It feels like it has been a long road to get to this point but we are confident that Cicely is moving to the right place for her for this next stage in her life.

Love you all Caspar, Louise, Anthony, Imogen, Cicely and Joanna

(Incidentally after Cicely’s MY PLAN was submitted they asked if they could use it as an ‘example’ and we hope to be able to pass this on at a later date).