Support and research gaps in learning disability

 Social inclusion is key for people with learning disabilities

Dr Nick Gore presents key research findings on learning disabilities

DIGEST OF THE DIGEST

● Families with learning disabled children are more likely to live in poverty

● More work is needed to provide sustainable employment for people with learning disabilities

● Staff tend to prioritise care tasks over developing social relationships

● Professionals lack expertise on dealing with challenging behaviour

Poverty and disability

● Poverty Transitions among Families Supporting a Child with Intellectual Disability. Journal of Intellectual and Developmental Disability 35 (4), 224-234 (Emerson, Shatahmasebi, Lancaster, and Berridge; 2010). http://bit.ly/gSb27P

This longitudinal study found that families who had a child with a learning disability were significantly more likely to be living in hardship or to have fallen into hardship and significantly less likely to have moved out of poverty during the period of study. These changes appeared to be closely linked to the employment status of parents (for example, salary and reduced working hours). It has often been difficult to disentangle cause and effect relationships in this area but the study certainly provides a further piece of the puzzle.

Needs presented to services

● Referrals to a Learning Disability Social Work Team 1996-2005. British Journal of Learning Disabilities 38, 168-174 (Morrison, Bickerstaff, and Taylor; 2010). http://bit.ly/eQdkk2

The social care needs of people with learning disabilities were indicated in this audit of referrals to a social work team. The study reviewed referrals over a 10-year period. Overall, an increase in referrals was noted, with particular increases for individuals with autism spectrum conditions and young adults. Here, 37% of the sample was recorded as having behavioural difficulties, with a higher percentage (79%) recorded for individuals with autism spectrum conditions. The study suggested the greatest area of need for adults with learning disabilities related to daytime occupation such as referrals to day care, further education or employment.

Supported employment

● Supported Employment for People with Intellectual Disability: The effects of job breakdown on psychological wellbeing. Journal of Applied Research in Intellectual Disability 23, 344-354 (Banks, Jahoda, Danan, Kemp, and Williams; 2010). http://bit.ly/hef5KI

The Department of Health’s Valuing Employment Now (2009) has given rise to several research initiatives to increase supported employment for people with learning disabilities. This study by Banks has, however, highlighted the need to focus greater efforts on sustaining employment for this group. The study interviewed 13 people with mild learning disabilities who had experienced job breakdown and reported many examples of the traumatic impact this had – “I didn’t have a job to go to and I only had benefits I felt really useless.” It is interesting to compare this finding in light of the daytime occupation support needs identified by Morrison et al.

Social inclusion

● The Role of Support Staff in Promoting the Social Inclusion of Persons with an Intellectual Disability. Journal of Intellectual Disability Research 54 (8), 691-700 (McConkey and Collins, 2010). http://bit.ly/f65vl1

It has been recognised for some time that people with learning disabilities often have limited social networks and that this relates closely to their quality of life. Those living in more individualised community settings (as opposed to institutionalised care) are likely to experience richer social contacts, yet this paper by McConkey and Collins suggests that support for social inclusion from staff (working in supported living, residential group homes or day centres) remains variable. Regardless of setting, many of the staff participating in the study prioritised traditional care tasks over community involvement and developing social relationships.

Policy and service development

●Developing Better Commissioning for Individuals with Behaviour that Challenges Services – a Scoping Exercise. Tizard Centre/Challenging Behaviour Foundation (McGill, Cooper, and Honeyman; 2010). http://bit.ly/frPUAT

This report provides an initial scoping of work to commission better quality services for people who display behaviour that challenges, in line with the Department of Health’s 2009 Valuing People Now delivery plan. The report details the findings of consultations with the families of six individuals who display challenging behaviour and eight commissioners.

Stark responses were provided by families, who described a lack of expertise from professionals, with direct support often only provided at times of crisis. Families had received little direct training, guidance or support and had generally not been involved in planning for the future. Within this context, out-of-area placements had often been seen as the only option.

Despite a substantial body of research documenting how best to support people who display challenging behaviour, the study suggests that much is yet to be done to meaningfully apply learning and guidance to services. The creation of the Challenging Behaviour National Strategy Group – www.thecbf.org.uk – founded by the Challenging Behaviour Foundation and Valuing People Team is likely to be central to such developments.

Dr Nick Gore is a clinical psychologist and lecturer in learning disability at the Tizard Centre, University of Kent

This article is published in the 20 January 2011 edition of Community Care under the headline “Support and research gaps in learning disability”

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