Show some support

May 25, 2006 in Disability, Family support

Parents with learning difficulties are often separated from their children due to concerns over well-being and a lack of relevant professional help. It need not be like this, say Linda Ward and Beth Tarleton

The white paper on services for people with learning difficulties in England is clear about the government’s commitment to the provision of support for parents with learning difficulties, so that they can successfully bring up their own children. It states: “People with learning disabilities can be good parents and provide their children with a good start in life, but may require considerable help to do soPartnership boards should ensure that services are available to support parents with a learning disability.”(1)

Yet in about half the cases their children are removed from them because of concerns for their well-being and the absence of support.

But in some parts of the UK parents with learning difficulties are being given support to enable them to bring up their children, so that they can stay together as a family.(2)

Finding the Right Support was commissioned by the Baring Foundation to map the issues confronting parents and professionals and to locate and describe examples of positive practice to address them. (3)

Our consultative group of parents with learning difficulties described the heartache of losing their children and the joys and challenges of bringing them up when they were allowed – and supported – to do so. The parents, like the practitioners who responded to our questionnaire, were aware of the negative prejudices and stereotypes about parents with learning difficulties, which they had to confront routinely.

Other key problems faced by parents and the professionals wanting to support them were:

Lack of awareness about the support needs of people with learning difficulties particularly on the part of professionals working in family support and child protection services.

Inconsistency and lack of clarity on what constituted good parenting – for example, a mother received conflicting advice from different practitioners on whether she should let her child use a dummy.

Lack of engagement with children’s services because parents felt that the professionals involved with them expected them to fail and treated them differently from other parents who needed support.

Late or crisis point referrals – often, parents were not known to services before the child was born because they had been managing without support until then.

Insufficient time and resources for practitioners to support parents adequately.

Despite all these problems, in some areas practitioners were helping adults with learning difficulties to parent with support. They were liaising with generic (non-learning difficulty-specific) services and raising awareness with the professionals there about the needs of parents with learning difficulties. At the same time, they were working to develop multi-professional, multi-agency support for families, and trying to empower the parents in the way that support was delivered.

Effective support for parents had a range of ingredients. At its best, it meant an early identification of parents who had learning difficulties, so that support could be made available from the antenatal period. A full assessment of their abilities and support needs was also important. Many practitioners used the Parent Assessment Manual, developed by Sue McGaw and her colleagues in the Special Parenting Service in Cornwall.(4) Parents also needed skills training of different kinds, often tailored to their particular needs. Help at home might be needed, perhaps with input from a voluntary organisation such as Home-Start. Parents and professionals commented on the importance of parenting groups, particularly those that were dedicated to parents with learning difficulties. Going to a group for parents with learning difficulties gave them the chance to meet other parents, discuss issues, swap ideas and experiences and benefit from input from visiting professionals. It also served to reduce isolation.

To be effective, support needs to be flexible to meet families’ individual – and changing – needs, for example as children grow from baby to toddler, to primary school age and on to the teenage years. Parents also need support to engage with children and family services. Where parents do not do this (because they fear their children will be taken from them) this can be a sign of their reluctance to co-operate and can work against them. Multi-agency working is also critical. Parents described to us a range of professionals coming into their lives, sometimes with conflicting advice. Keyworking – with one primary worker liaising with the family and between the family and other professionals – can make a difference.

Other help is provided in some places. Parents routinely receive booklets containing babycare information when their babies are born. Parents with learning difficulties need access to this help and advice too, in an understandable format, like Change’s book.(5)

Parents also emphasised the importance of advocacy support, especially during child protection and judicial proceedings, in which they were so often involved. Advocates helped them “with writing letters”, “argued their points across” and were “good at problem-solving and keeping social services on their toes”.

Practitioners involved in our study were clear they would value more training. Those working in services for adults with learning difficulties wanted training in child protection issues. Those involved in children’s – or generic – services wanted training about adults with learning difficulties and their support needs. At a local level, joint protocols and pathways, of the kind being developed in places such as Stockport,(3) and agreements about shared assessments were seen as critical to effective, multi-agency working to support both parents and their children.

Our research confirmed that this is a complex area for all those involved, with parents and practitioners concerned to ensure that both children’s welfare and parents’ rights are safeguarded. On the one hand, the emergence of grass roots initiatives in the UK to address both sets of issues is heartening, as is the forthcoming national practice guidance for practitioners. On the other, the split between adults’ and children’s services at a local level looks set to pose a new set of challenges for those practitioners trying to deliver joined-up support, so that parents with learning difficulties and their children can enjoy life together as a family.

Linda Ward is director of the Norah Fry Research Centre at the University of Bristol, where she is also professor of disability and social policy.
Beth Tarleton is research fellow at the centre. They are co-authors with Joyce Howarth of Finding the Right Support on issues and services for parents with learning difficulties published by the Baring Foundation.

Training and learning
The author has provided questions about this article to guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl and individuals’ learning from the discussion can be registered on a free, password-protected training log held on the site. This is a service from Community Care for all GSCC-registered professionals.

Abstract
This article summarises key findings from a new study on the issues confronting parents with learning difficulties and the practitioners involved with them and their children. It looks at the challenges facing professionals and parents in this area and describes examples of effective support which enables parents with learning difficulties and their children to stay together as a family.

References
(1) Department of Health, Valuing People: A New Strategy for Learning Disability for the 21st Century, The Stationery Office, 2001
(2) J Morris, The Right Support: Report of the Task Force on Supporting Disabled Adults in their Parenting Role, Joseph Rowntree Foundation, 2003
(3) B Tarleton, L Ward, J Howarth, Finding the Right Support: A Review of Issues and Positive Practice to Support Parents with Learning Difficulties and their Children, The Baring Foundation, 2006
(4) S McGaw, K Beckley, N Connolly, K Ball, Parent Assessment Manual, Trecare NHS Trust, Truro, 1998,
(5) F Affleck, S Baker, You and Your Baby, Change, 2004

Contact the author
l.ward@bristol.ac.uk