At the National Autistic Society in Gravesend, Kent we support 19 residents in three residential homes all of which attend one of our two Day Services. All of the people we support have a wide variety of abilities and wherever possible, their individual choices are fully supported.
We have been with the Active Support project for a while and had some initial training on how this is delivered.
In the beginning, some staff were reluctant for change and more paperwork, although there were some staff who actually felt quite upset as they realised that they were doing far too much for people and potentially de-skilling them.
After a while with a few setbacks and some people not really understanding the concept, the staff team seemed to realise the potential and that for most of the time they were doing it anyway. After several staff meetings, paperwork was tweaked and made more person centred and Active Support began to come in to its own.
After sadly losing one of residents following a short illness we had a vacancy.
We received a telephone call regarding a gentleman, M, aged 62 that had spent 50 years in an institution due to an incorrect diagnosis. He had been sedated using very strong medication and had also been given ECT (Electro Convulsive Therapy) to manage his behaviours although this ceased as newer methods were discovered.
He needed to be moved as a matter of urgency and against our better judgement and with only with one prior visit to the home, so no real transition period, the residential manager and senior support worker (who was to be his key worker) drove the 70 miles to fetch him. All we knew about this gentleman was what had been written about him and it made for quite worrying reading. There was mention of physical and verbal assaults towards staff and other patients as they were known, non-compliance with anything, heavy smoker (over 40 a day) and some quite challenging behaviours. His care plan stated that although he was only partially sighted, he was able to access the local shops to buy his cigarettes however he wore a hi-vis jacket and had a white stick.
After a very long while of encouraging him to go with them, he got in the car and returned to Gravesend. Staff were a little sceptical as all of the information was quite negative other than he liked art and listening to the radio. He was unable to carry out any simple task as, as he stated, he was a “lazy, smelly, dirty imbecile” which he had obviously been called over a very long period of time and was so institutionalised we would struggle to get him to comply.
When he arrived, staff were completely taken aback as he did not present with the information we had been given. He was, however, a very heavy smoker.
As there was no transition period we had to set some very firm boundaries from the start whilst at the same time, taking into account that he had been institutionalised for 50 years and this must have been very frightening for him. He had very little luggage and very few possessions as such and his financial arrangements were completely wrong.
As M had never been instructed or shown how to carry out simple tasks H started with very tiny steps with lots of verbal and physical prompting. M was shown how to load the dishwasher then asked to put his cup in the dishwasher, eventually M was not only putting his cup in the dishwasher but loading it after dinner, putting the powder in and even turning it on. Now after 8 or 9 months, H will ask M: “M, can you load the dishwasher, please?” and that is the only prompt that he needs.
M has been with us for 10 months and since he came he is a different person. His personal care has improved, had a haircut, been on holiday, been to the pub etc. and we have seen what a lovely gentleman he is, very placid and easy-going not at all like his risk assessment stated.
His behaviours (some of which when he was a younger man and had not been removed from his paperwork), were generally when he was refused a cigarette without a reason or being exploited by other “patients” who demanded money from him.
H, the senior worker, explained that there was a no smoking policy in place and that there would have to be set times and places where he could have a cigarette both in the home and at the day services. H soon discovered that most of M’s anxieties were around his cigarettes but also he had been harassed by other “patients” for his cigarettes and any challenging behaviour was usually a result of this or being refused a cigarette by staff without good reason.
It was explained to M from the very beginning the rules around smoking and that there would be set times for him to have a cigarette ensuring that there is a clear beginning (preparing items for the activity), a middle (completing the activity) and a clear end (M has his cigarette).
Within one or two weeks, M was down to 10 cigarettes a day as he was given specific times and also specific tasks to do prior to him having a cigarette and there was always the same response from all of the staff team depending on what he asked.
Although M will always have institutional behaviours and rituals, he is slowly settling in to his new environment and being involved in all of the in house activities. He had never had a holiday and not really been part of the local or wider community. His risk assessments stated that he accesses the local shops which we discovered was within the hospital grounds in a safe environment so sadly M will not be able to access the local shops without the support of staff due to his failing sight and not knowing the area.
With the Active support from the staff, especially H, and also from the other residents, M has very quickly adapted to his new environment and his new found freedom and has really settled into the home. M is keen to learn, however this has to be at his pace due to his age and length of time he spent at his previous placement.
He is clearly very happy and his days are filled with various activities, trips out, meals out, a holiday, all of the things we all take for granted that have been denied to M for so many, many years.
He still refers to himself as a “patient”. However, with Active support and time and the commitment from H and the staff team he will eventually see that he is ” “M”, an individual.
Beverley Vickery
Deputy Manager
Gravesend, Kent