A study in Wales shows that parents with learning disabilities have mixed experiences of services. Nick Gore looks at how the findings could inform better practice
KEY WORDS: learning disabilities; parents; Wales; support
Author: Joyce Howarth
Title: Being a Family: Parents with Learning Disabilities in Wales, published by Learning Disability Wales (2009), 97 pages.
Aims: To estimate the number of parents with a learning disability in Wales; investigate the experience of parents with a learning disability and the experiences of professionals who support them.
Methodology: Questionnaires were sent to services asking about the number of parents with a learning disability they worked with. Interviews were conducted with parents who have learning disabilities and professionals who support them.
Conclusion: An initial population estimate was provided. Parents reported positive and negative experiences in relation to service support.
It has been suggested that the number of parents with learning disabilities is increasing (Valuing People: Department of Health, 2000), though accurate figures have yet to be provided across the UK. It is generally recognised that, although such parents often need more support, the relationship between intellectual ability and parenting potential is mediated by a range of environmental and social processes. Input from professionals working in this area therefore requires careful consideration. To date, recommendations for best practice have been provided in England (Department of Health and Department for Education and Skills, 2007) but not in Wales.
How many parents?
There are several methodological difficulties when assessing learning-disabled population sizes, including the diversity of service providers and the varying definitions of learning disability.
In the current project, questionnaires were sent to services in two areas of Wales. Of the 15 sent to services in Caerphilly, eight were returned and analysed. Overall, 91 families were identified in which at least one parent had a learning disability. Employing a formula developed by Lowe and colleagues (2007), it was estimated that 763 people with a learning disability lived in this area, 12% of them parents. The number of parents with a learning disability in Wales was estimated at 1,200.
Eleven people with a learning disability who lived with one or more of their children were interviewed on “feelings about being a parent” and factors that made this easier or more difficult.
● Being a parent: All participants expressed a strong desire to live with their children (“if you are a parent, you’re a parent, full stop”) underpinned by a love of parenting (“the best thing is watching them grow up”). Parents also reported pride in being able to support their children, when professionals had suggested they would never cope.
● Common experiences: Many had complex parenting situations. One reported his house being “stripped” by social services when his daughter was admitted to hospital with meningitis. This was later recognised as being unrelated to the family’s living conditions though no apology was made. Others whose children had been subject to sexual assaults from perpetrators outside the family reported a lack of support from services.
● Problems with letters: Despite recommendations laid out in the Disability Discrimination Act, most parents reported difficulty understanding communication from professionals. Within the context of childcare proceedings, this disempowered parents and increased anxiety (“there were big words that made me panic”). A poignant example is provided of a Welsh-speaking mother who was required to undergo all involvement with her social worker in English.
● Views on children’s services: Parents reported mixed experiences with children’s services. Although some were positive, many suggested inflexibility and misplaced demands (“the hoops I had to jump through”).
What is good support?
Parents’ responses highlighted principles for effective support. Primary among these was being listened to; for professionals to identify and acknowledge what parents are asking for to encourage their contact. Parents also highlighted the need for reliable responses and practical support to resolve problems. The importance of ensuring choice and control to families was further underlined, as was the need for services to take a whole-family perspective rather than viewing parents’ and children’s needs separately.
How is support provided?
Additional interviews were conducted with social work and advocacy professionals. Professionals varied in terms of experience in supporting parents with a learning disability (for half this had been the first time) and training and supervision arrangements they could access. Only one professional had received detailed training in this area.
Participants reported lack of communication between professionals as a major area of frustration (“often they’ve kind of forgotten to ring me up”). A lack of joined-up working was particularly salient with regard to adult learning disability and child and family social work teams. Here, there was a sense that each team worked in very different ways with little reciprocal understanding (“I come at it from a different angle”).
Problems with inter-agency working were also influenced by adult social workers’ limited experience of childcare procedures and a lack of experience among children’s teams of supporting adults with a learning disability. The absence of policies and consistent standards often meant that practice decisions relied on personal judgements.
What support has worked well?
Professionals reported being passionate about families staying together and expressed considerable empathy with the parents’ situations. Practical support offered by professionals was wide-ranging but a person-centred and holistic approach was recognised as essential to build confidence for parents. Personal investment of professionals was also expressed in recognition of parents’ achievements.
This is a useful piece of research that further highlights the experiences and needs of parents with learning disabilities to better inform practice. Considerable caution should however be taken in the interpretation and use of the population figures provided. In addition to those methodological factors previously outlined, the opportunistic sampling method and low response rate limit the validity and reliability of findings.
The work does represent an important step in identifying parents who may need extra support and the sort required. Notable is that those parents interviewed represented success stories (in that they could live with their children), yet reported negative encounters with professionals. The need for dissemination and monitoring of practice guidelines in this area is now paramount.
● The Welsh government should produce guidance on working with parents with learning disabilities in Wales, and local authorities should produce more guidance.
● Data should be collected locally on the number of parents with learning disabilities.
● Parents with learning disabilities should be offered a person-centred plan.
● Adjustments need to be made to written communications.
● Adults staff should increase knowledge of childcare procedures.
● Need to adopt a family viewpoint and empathise with parents.
● Children’s services need to work with parents in partnership.
● How do parents with learning disabilities cope as their children get older?
● What are the origins of professionals’ perceptions of parents with learning disabilities?
● Coren, Hutchfield, and Gustafsson (2010), Parent Training Support for Intellectually Disabled Parents, The Cochrane Library (issue 6).
● Journal of Applied Research in Intellectual Disabilities (2008) Vol 21, Issue 4, special issue, “Parenting by people with intellectual disabilities”.
Dr Nick Gore is a lecturer in learning disability and a clinical psychologist at the Tizard Centre, University of Kent.
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This article is published in the 18 November 2010 edition of Community Care under the headline “Building effective support for learning disabled parents”