PRACTITIONERS: Sarah Pilkington, social worker, Worcestershire social services, and Adey Stevens, area manager, domiciliary services, Dimensions UK.
FIELD: Learning difficulties.
CLIENT: Nick Evans, 39, has moderate learning difficulties arising from anoxia (a lack of oxygen) soon after birth. He also has cerebral palsy which affects his balance and means he needs to use a wheelchair outside.
CASE HISTORY: Nick was living in a bedsit attached to his mother and stepfather’s adapted bungalow. He received regular respite at a small group home and also had support from carers from a not-for-profit agency, Dimensions UK, so that he could attend social activities. He had previously lived in a range of settings, including a supported flat, a family home through the adult placement scheme and also a large group home. All of these placements had broken down, leading each time to a return to his mother’s care. However, Nick was becoming increasingly frustrated at his perceived lack of independence and directed much of this frustration towards his mother. As a consequence, their relationship was close to breaking point.
DILEMMA: There was a high level of anxiety from Nick and his mother as to whether a move into his own home would be successful.
RISK FACTOR: Nick’s history of failed placements may cause a lack of confidence in making this work and increase his vulnerability.
OUTCOME: Nick now lives on his own with some daycare support, is a lively member of his community and works as a user representative on various committees.
If ever a quote should hang on the wall of Nick Evans’s home, it must surely be: “If at first you don’t succeed, try, try again.” Each time Nick, who has moderate learning difficulties, left his mother’s house to live independently it failed.
He was again living with his mother when his case was passed to social worker Sarah Pilkington. “One of the first things Nick said to me was that he wanted to move out and try again to live on his own,” she says. “He had tried in the past but it hadn’t worked out but felt he was ready to try again.”
Understandably, given his record, his mother and, indeed, Nick himself were worried whether a move would be successful. “Nick acknowledged that he would need a lot of support initially,” says Pilkington. “We felt that Nick could only be safely supported with a member of staff with him at all times.”
At that time Nick had support from carers from Dimensions UK (a not-forprofit organisation supporting people with learning difficulties) aid through the Independent Living Fund to help him get out and about.
Pilkington says: “As these support arrangements were working well, as soon as a suitable ground floor flat had been identified we applied for ILF funding for an extension. Also, with increased funding from social services and money from Supporting People, we could purchase a 24-hour service from Dimensions UK.”
Over the next year Nick lived with a full staff team. Adey Stevens, Dimensions UK’s area manager for domiciliary services, says: “Staff would come on shift when Nick came back from day service at 3.30pm and do sleepovers; and staff would leave when Nick went to the day service the next day. Over that year, we discussed Nick wanting some time on his own – he had enough of always having someone with him.”
Nick also wanted to leave the day service. “He had reached the point that it was redundant for him, he wasn’t getting anything out of it,” says Stevens.
An initial trial left Nick alone for a couple of hours each evening. “It got longer and longer,” says Nick. “And I felt more confident to do it on my own. And then I said to Adey that I want the night staff to stop altogether.” This provided bigger challenges. “We talked a lot about the risks – about what might go wrong,” says Pilkington. “For example, what would happen if Nick slipped in the bathroom and couldn’t get back up; or if there was a problem with the neighbours and general health and safety around the house.”
However, the excellent recording by the support staff revealed where the real rather than perceived difficulties lay. “Sleepover staff had never had to get up and deal with anything with Nick – so we knew there was little risk at night,” says Stevens.
As the change approached, Nick began having reservations. He says: “I started to think ‘I can’t do it, I can’t do it’. But Sarah and Adey told me ‘Yes you can’. And they were right. Now I stay on my own at night. It’s wicked; I can have parties if I want! I’m very happy to stay on my own. I have turned my life a round and I am very happy for myself and what I have done with my life.”
Pilkington adds: “Nick is a real ambassador for what people can achieve. It took about 18 months to get where we are now but that was the right pace for Nick.”
“Definitely,” agrees Stevens. “We had to go at Nick’s pace every step of the way otherwise if we had withdrawn support earlier his confidence would have been knocked.”
Nick now has on-call support. “He makes a phone call in the morning to say he’s up and fine; and support is planned week by week depending on his commitments,” says Stevens.
“We put in support between 4-7pm to help Nick cook a hot meal and allow him to take a shower, because they are the key areas that we realise he has risks.”
Nick now has links with a person-centred day service – Worcester Active – and enjoys activities such as snooker and get-togethers at the local pub. “He even travelled independently by train to watch the snooker championship in Sheffield,” says Pilkington. “Recently, he has spoken at regional conferences about his experiences of moving into his own flat and how he has achieved greater control over his life.”
Nick himself is sure where to place the credit for his new life. “If it hadn’t been for Adey and Sarah I wouldn’t be sitting here telling my story to you. They are very special.”
ARGUMENTS FOR RISK
● Despite past failures, Nick wanted to try to live independently again. The workers involved took into account the history and worked at Nick’s pace.
● A comprehensive risk assessment looked at all areas of vulnerability and identified the necessary safeguards. “This process was greatly assisted by staff recording over the previous 12 months, which highlighted where there was an actual risk and where concerns were based more on historical issues,” says Pilkington.
● Practical changes were made, such as lowering the access bolt on the fire exit and fitting a key chain for Nick’s safety which also allowed staff emergency access.
● Support staff undertook a skills training programme with Nick looking at staying safe in the home, including the need for visitors to show identification.
● The process boosted Nick’s confidence. The phased withdrawal of sleepover cover was achieved within a fortnight, which Nick felt was a huge personal achievement.
ARGUMENTS AGAINST RISK
● Nick’s record of independent placements had all failed – each time he had to return home to his mother and stepfather’s house. It could be argued that is where he felt safest and the concerns of his parents about more failure are understandable.
● The parental concern was shared by professionals. “Initially, there was concern as to how he would cope on his own, particularly in dealing with emergencies or people coming to the door,” says Pilkington. “Nick is a very friendly and outgoing man who naturally invites people into his home and this can make him vulnerable. He had been a victim of crime when previously living independently.” Any attempt to move Nick into his own home and without support staff is placing him at risk of further crime.
● There is a difficult balance to be struck at times between support arrangements that maximise opportunities for independence and those that ensure the safety of the service user.
Fantastic! Nick has shown everyone that he can live by himself, travel by himself and do the things that he wants to do, writes Kathryn Stone.
Behind all these ordinary, everyday ambitions is the inevitable complex array of funding. Many people with learning difficulties and their family members that we speak to at Voice UK are put off from promoting such a degree of independence because the finance is so bewildering and confusing. And understandably so, because they feel the risks of harm and breakdown of arrangements are very real.
In Nick’s case previous breakdowns have not tainted further attempts at independent living. I remember some years ago a young woman with learning difficulties being placed back in a residential care home after a trial of independent living because she had caught the wrong bus. In doing so, therefore, it was argued, she could not manage transport. Time, thankfully, has moved on.
However, this is not to underestimate that these are huge steps for Nick and his mum, who must be so worried about the possible harm that could come to Nick, especially as he has previously been the victim of crime. It should be reassuring to her that such care has been
taken to assess, minimise and manage risk for Nick.
Sarah Pilkington and Adey Stevens are to be congratulated for their positive approach to Nick’s ambitions and for having a belief in Nick that he could do it. This is what social work is about. This is how to value people.
Kathryn Stone is chief executive of Voice UK, a national charity working with people with learning difficulties