The Care Act came into effect in April 2015 and has started to make some difference to assessment practices. Val Williams, Jon Symonds, Caroline Miles, Mike Steel and Sue Porter, a team from the Norah Fry Centre for Disability Studies, examined how they are affecting people with learning disabilities and conclude that they are causing some problems but also having successes.
Study title: The values of assessment: disabled adults and social care
Aims
To find out about how social care assessments get done, from the point of view of disabled people themselves and from the perspective of practitioners
Methods
A disabled people’s group from a centre for inclusive living worked on the project, alongside a mixed team of researchers at Norah Fry Centre for Disability Studies. Methods included story circles about experiences of assessments with 25 disabled people (in three groups); interviews with 30 practitioners and managers over three local authorities; audio-recordings of seven assessments in practice, and joint workshops with practitioners and disabled people.
Background
The Care Act came into force in April 2015 in England, introducing the requirement to assess any adult who appears in need of care or support. It replaced the ‘Fair Access to Care’ criteria, where people had to show they had critical or substantial needs to qualify for social care.
The Care Act focuses on the principle of ‘wellbeing’. Assessments must be person-centred, identify the person’s own chosen outcomes, and identify needs which, if met, would enable the person to achieve those outcomes.
We know from past research that people with learning disabilities may need more guidance and support than some other groups (Williams, Porter et al., 2014; 2015). A new duty has been introduced to provide advocacy for those who have ‘substantial difficulty’ in being involved in assessments and lack suitable friends or relatives to represent them.
Findings
Only two of the practitioners we interviewed worked in learning disability teams. People known to these teams tended to have been known to the social workers over a period of years.
Other practitioners from general ‘adult’ teams also gave examples of working with people with learning disabilities and with clients on the autistic spectrum.
They gave some interesting hints about how the Care Act is broadening the spectrum of clients who are assessed by social workers, including those assessed as having ‘borderline’ learning disabilities and who may be able to access small amounts of funded support or community-based services.
People do not necessarily fall into neat client groups and the social workers interviewed wanted to see their clients holistically. For instance, people may come forward because of their hearing or vision problem but it then turns out that they also have a mild learning disability. In many of these cases, people were coping until there was a crisis and that was the point at which social services got involved.
We were told about health crises, hospital discharge, financial problems, people living in squalor (or actually becoming homeless), and involvement with the police because of problems with drink or drugs. There were also stories about people whose needs related to parenting, whose children were at risk of being taken into care. Some of these people were said to be very suspicious about social services and so did not always accept the need for assessment. Social workers mentioned the need for advocacy in several cases but found major gaps in specialist advocacy services.
Disabled people wanted to be in control of assessments and really disliked social workers telling them what they needed. One person said it made her feel ‘very very stupid’, as if she was not really coping. This was also a theme from one of the practitioners. They wanted assessment to be person-centred and to leave an ‘open space’ for clients to determine what outcomes were important for them, as in the Care Act. However, it was clear that there was a spectrum of clients, with some people being seen as reliable and others as less reliable. People with learning disabilities in general tended to be considered ‘less reliable’ and that could be for two reasons.
As one social worker said: ‘‘Sometimes they need help but don’t want it, and sometimes they want help and don’t need it’.
In the first instance, there were people who seemed to be in need of social services support but were underplaying their needs. Sometimes these situations were seen as risky, with social workers feeling they needed to safeguard the individual (for example, if they were making risky decisions about money). Secondly, we were told about people who seemed to be overplaying their needs, in order to get more out of the system. Both scenarios are problematic. Practitioners’ response was to use their own professional judgement. They spoke about the assessment as an ongoing process where they may be making judgements all the time they are with someone – partly based on what they observe in the home, or what they can see the person can do.
This can be difficult from the point of view of people with learning disabilities themselves and we were told how hard it is to have a voice during assessment processes. Social workers were aware of this and tried to manage assessments so that both the person with learning disabilities and their family members have a voice. This is one of the points we are exploring with practitioners during user-led workshops.
Conclusions
Assessment can be a complex process and requires lots of skills on the part of both the practitioner and the disabled person. It is hard to talk about the things which you cannot do, and to seek support for those needs, and it can make people with learning disabilities feel depressed or undermined.
This project brings disabled people together with practitioners, so that both can understand more about the other during workshops which we are calling ‘A Joint Enterprise’. That approach could be used more widely and we are planning to produce some materials which can help other practitioners and disabled people to get together in workshops or training days.
Although the Care Act promotes self-determination, previous work has shown that many people with learning disabilities need support in making decisions, and many would benefit from advocacy. Practitioners felt that they needed more help in understanding the assessment of capacity, and the way in which the Mental Capacity Act might work together with the Care Act.
Energy
In the meantime, though, the Care Act has generated a lot of energy amongst frontline practitioners to defend the rights of people with learning disabilities and to support them in what they want to do. It is a good moment to carry on the efforts to make sure people with learning disabilities get better lives.
KEY MESSAGES
- Under the Care Act 2014 people with mild learning disabilities can be assessed for social care. This can be helpful for them, if there are services or community supports they can access.
- People with learning disabilities could be benefiting from independent advocacy under the Care Act but there are gaps in provision.
- Families and carers have a key role to play in supporting people in assessment processes and it is important to find ways of including their views, while ensuring the voice of the person with learning disabilities is central.
References and further
reading
Williams, V., Porter, S. and Marriott, A. (2014) Your Life, Your Choice: support planning led by disabled people’s organisations. British Journal of Social Work: 44, 1197–1215.
Williams, V. and Porter, S. (2015) The Meaning of ‘choice and control’ for people with intellectual disabilities who are planning their social care and support. Journal of Applied Research in Intellectual Disabilities DOI: 10.1111/jar.12222. 1-12
Authors’ note
This article summaries independent research funded by the National Institute for Health Research School for Social Care Research. The views expressed are those of the author(s) and not necessarily those of the NIHR SSCR, NHS, the National Institute for Health Research or the Department of Health.
