Kate’s story is sadly not unusual but demonstrates how neglect can contribute to a person’s loss of skills and reduced participation in life. Nick Johnson and Donna Taundry recount how Kate’s life was put back on track.
It is the nature of working with people with learning disabilities that the relationship between them and their families and helping agencies is a lifelong one. From the moment they are born, or diagnosed as babies, people with congenital disability are on a track that most will never entirely get off.
Parents of disabled children become ardent advocates on behalf of their children. The current crop of parents are probably significantly more assertive about the needs of their child and their expectations than the generations that went before.
There is a well known story in which a woman described her pregnancy like a holiday of a lifetime in which she read about the destination, say Paris, began to learn the language, bought suitable clothes all to prepare for the great occasion. When she gave birth to a disabled child, she described it like setting off for Paris after all that preparation and landing in Moscow where you knew nothing and your preparation was largely useless.
Parent and child are on a steep learning curve and one of the roles parents quickly take on is that of an advocate to ensure this disadvantaged child does not miss out. Into the 1960s, 70s and 80s, parents were still deferential to doctors, social workers, educationalists and other experts in the hope that their advice would ensure the safety, security and maximum development of their child.
By and large, there were two options. You stayed at home and went to special school or you went to a special boarding school, mostly from Monday to Friday. If you presented any kind of difficulty, you may be shipped off to a long stay hospital. Parents were collaborators rather than advocates on many occasions, not knowing what was best.
Kate’s story
This is Kate’s story. When her Mum got into difficulties she went off to the special boarding school. It is not clear what Kate thought and certainly the views of her parents were not sought. It must have been a shock then to be told suddenly that the school was to close and she was to come home. She still went to the day school and there was respite care in the holidays to give some support.
When she came home, her behaviour problems had not been dealt with but it was presumed the parents would be good for another period of caring. Her Mum worked hard helping her with the skills of daily living by using caring and consistent routines. At the end of her education, and with no prospect of achieving any level of independence, she was placed in a specialist care home over a hundred miles from her home.
In parallel with how ordinary children moved on (to college, job, relationship away from home), the idea of Kate moving to a care home seemed normal. Because of the distance, visits were inevitably less often than they would have been and even these tailed off after a while because Kate’s sister hated visiting and, in time, the whole thing distressed her Mum and Dad.
After ten years at this home, Kate was bed-bound, doubly incontinent, unable to eat unaided, drinking from a baby beaker and bathed in bed. She had been bathed in a bath or shower but it had taken three staff to wrestle her into the bath, so the home had given up. She never went out because she could not relate to other residents and in any case could be aggressive and because she was prone to eating her incontinence pads, she was clothed in a Lycra-type one piece that she could not take off or get into without help. All her DVDs, cassettes and equipment were locked away in a cupboard in her room and were only brought out under supervision with staff choosing what they would put on TV.
Daily dilemma
A neutral observer could see that every action by staff that reduced Kate’s liberty may also have improved her safety and security and reduced the amount of distress and aggressive behaviour she displayed. So it was correct but wrong, a daily dilemma in the provision of social care which is always defendable when we cease to consider the views of the service user. And with her support and advocacy a hundred miles away, Kate had no chance. Deprivation of Liberty safeguards had not even been considered.
Once a placement was found for this lifelong associate of the local authority, case files invariably lay dormant with an annual review verifying that the person’s needs are being met and the placement remains suitable with a recommendation for continued funding. It is a sad fact that these reviews were rarely done by the same person and may well have been given to an unqualified person as the task was not deemed complex enough to demand the attention of a social worker.
The only constant in this process was Kate, so no one, except perhaps her overwhelmed and powerless Mum, could see the slow deterioration of her skills and involvement in life. Kate could not say what she felt and, seemingly, no one waiting long enough to find out before suppressing any challenge she made.
The role of the social worker
So, thank goodness for the social worker at the tenth year review who looked at her with skilled, ambitious and aspirational eyes and could see this was not ‘life’ for a person under 30! We don’t know whether they had received a clue from an alert about the quality of care from the local Director of Adult Social Care following a safeguarding enquiry. Either way, Kate’s case was critically reviewed for the first time since her placement and for that we have to be thankful.
When social services came back to the parents to say they planned to remove her from the home, their first thought was they were going to be given the caring role back. It had happened before, so why not now and they were distressed and resistant. Fortunately, it was not to be and a local home was to be sought.
There may have been trouble in the background because, on this occasion, price was less important than suitability and most providers know that is usually a sign that the local authority may feel they have been negligent or are at risk of criticism. The fact the care assessment produced a care plan with these needs to be met at a fair price seemed to strike no irony with commissioners. But an appropriate placement was found and Kate is what is most important in this consideration.
A solution was found in a small home in a market town near where she was born. It had an apartment built onto the back where Kate could live with close support but separately from other residents.
The home had no choice but to begin where she was. So they began her support where she had left off at the other home. The move had been traumatic enough and rehabilitation was going to take skill and time.
Her mother was horrified at the deterioration in her daughter but was able to tell the home what Kate had known and the skills she had acquired when she had cared for her at home. She could talk about the triggers that started her poorer behaviours and also what she enjoyed. This seems to have been the first time she was consulted meaningfully.
The home also sought help and guidance from a psychologist, speech and language therapist and an occupational therapist along with a consistent reviewing officer. The plan had to be led by the home manager and her assistant to keep a focus on a culture of improvement as every inch of progress was rolled out to a wider staff group. They trialled next steps with Kate to see what worked.
The first job was for Kate to be out of bed and to feel that this house was different. She chose to sit on the floor. Staff continued to assist her to eat where she sat and and eventually introduced a spoon which she had the option of picking up. This process was evocative of the first teaching of a child. Eventually she picked up the spoon and took food herself. After almost two years, she feeds herself.
She had been bed-bathed after previous staff had given up wrestling her to the bath. To even pass the bathroom was traumatic at first. Creative ideas were used to take some steps – a worker ‘paddled’ in the bath, with the door open, showing obvious enjoyment of the smells and bubbles in a warm and decorated room. Kate’s curiosity overcame her and she came to peep, eventually coming in and putting her hand in the water before scurrying away. She now happily takes a full bath and is left to soak and enjoy it, with nearby help at hand.
Her continence is managed by her wearing clothes that are modern and attractive but functional for changing purposes and her inclination to remove pads is overcome by someone being with her.
Her things are all out in her room so she can see them. When she chooses a DVD to watch, she can see and select from them all. She ventured out in the garden once she began to feel comfortable, having resisted leaving her apartment. A similar hurdle had to be overcome about going out. Her only memory was of being put into a car and moved to somewhere she didn’t know. Little journeys round the block with the people she trusted most were built up over time to gain her confidence. This development work is ongoing.
Kate is a changed woman, much nearer to the one who left home, and with potential for further exciting development. Who knows, she may not always need so much support?
Unacceptable
Kate is recovering and progressing – at great expense and with a lot of time and patience. These steps could have been held and carried on from her mother’s early work. It is false economy for commissioners to buy the cheapest or ‘good enough care’ for a person with complex needs, when most of us know that a high cost intervention may be needed later to correct the damage caused by inadequate investment. It is unacceptable because the people who ‘pay’ for this are the Kates of our world and their families.
At the time of writing Nick Johnson was Director of Development and Donna Taundry Home Manager, both at Exalon.
