Puzzled, angry and emotional. The human story of a ‘building’ by a mother, or what the ARCs actually do.

I am very puzzled and very angry and very emotional.  My daughter J is now 20.  She has very complex needs and until this year we looked after her at home.  Her transition started three years ago at 17 at Langlands, an excellent expert specialist school, which suited her well.  There were extensive meetings with all the professionals, teachers, social workers from both children’s and adult services plus ARC staff.  At feedback sessions with inspectors like SWIA many say how the change from children’s’ to adult services is like falling off a cliff.  The secure world of excellent support can vanish overnight at 18 and that’s very frightening.

Many are not only frightened but left abandoned, but at Langlands that didn’t happen.  Why?  Because of the ARC.  It’s much more than a building, it’s human.  The meetings were in depth, encouraging all parties to put forward ideas and ask questions.  J then started visiting the ARC on a Monday with a member of the school staff who she knew well.  Change had to be gradual and reassuring.  This was gradually increased to five days and took 6 months.  Everything was planned and done to the most minute detail to make this a comfortable and successful transition.

I was kept informed at all times of what was going on and encouraged to make contact at any time with suggestions or worries.  J’s timetable is reviewed regularly and allows for input from home.  J’s uncle raised a great deal of money for the ARC and some of this was used to bring in an external expert in autism.  This was of great benefit to both J and the staff.  It allowed everyone to understand how autism affects someone.  It was also of benefit to other clients as it gave staff training for now and the future.  That expert was so impressed by the transition programme that he reported it was a model of excellent best practice that he felt should be replicated across Scotland, if not the UK.  That was because of the excellence of ARC staff, but it also required a purpose designed building.

J cannot say “I am happy to go to work”, but we know she is because she goes with a smile on her face.  She is learning new skills at her level and has made friendships.  She now lives in a shared home with three others, where there is the same detailed input and imagination to her care.  I have just been involved with J’s six month review, which took nearly all day.  I could not believe how detailed and individualised it was with the care home staff, ARC staff and social worker.  How person centred it was, which is what I understand ‘personalisation’ to be.  Putting the person, J,  at the centre of the process and assessing and responding to her needs in the best way possible.  But it was only possible because of the ARC.  This is the centre, J’s sun, around which her life and ours now revolves.  Because if she is secure and happy so are we.  I am so impressed and wish to say so at the meeting on 16-Dec.

How I wish John Alexander could have seen it.  It’s why I have invited him to visit J and spend time with her at the ARC that has done so much for her.  To see what he and Ms Proctor propose to destroy for J and so many others, presumably out of their ideological ignorance, or desire to cut costs.  Like others, J needs the calm secure ARC ‘building’, not trailing around the town getting distressed, ‘in the community’.  What meaningless words.  That won’t cut costs, it will increase them just as surely as it will decrease the quality of her life and ours, so painstakingly created by dedicated staff at her ARC and care home.  For each J there are many others.  That’s why there is such an outcry and why ARC staff and managers are also in tears, like us.

So that’s why I am so very puzzled, angry and emotional.  I see personalisation in action and it requires dedicated expert motivated staff in a building, just like everyone else.  We all inhabit and work in ‘buildings’.  When I read their ‘plan’ I don’t recognise what they describe, just an ill founded experiment to destroy many lives and increase costs.  But they are experts and wrap up their ideas in a wonderful sounding language that appears very plausible to those who haven’t a clue about J’s reality and mine and many other families like us.  I am describing Castle Douglas, but it could equally be; Annan, Stranraer, Kirkconnel, Newton Stewart or Dumfries.  Instead of destruction let’s cherish and develop what we have created.  It works and is as cost effective as it can be.

So put away your ideological fantasies and get in the real world.  Come and stand in our shoes for a day or two.  Individual budgets, direct payments or any other bureaucratic nonsense is not what J requires.  There is a waiting list.  Perhaps the £1.2 Million ‘pilot’ would be better spent on doing more of what actually works and can be seen to work, to help more people like J.  But presumably it’s much more fun ‘modernising’ and playing ‘pilot’ games, even if they have to be run from someone’s dining room table, as we now learn.  It’s a good job the front line staff are really professional and expert in their jobs, but then you intended to sack 30 of them.  Please explain why I shouldn’t be puzzled, angry and emotional.