INTRODUCTION

1.  The Working Together with Parents Network

  The Working Together with Parents Network is a consortium of six national organisations and individual experts working to improve support to parents with learning disabilities and their children so that they can stay together as a family. The project partners are:

—  The Norah Fry Research Centre, University of Bristol (NFRC)— which coordinates the Network and acts as its administrative base in England and Wales.

—  CHANGE—an organisation of disabled people, which supports the activities of parents with learning disabilities within the Network.

—  The Scottish Consortium for Learning Disability (SCLD)—which runs a parallel network in Scotland.

—  The Family Welfare Association—which links the Network into a wider range of mainstream family support groups and activities.

—  Dr Jenny Morris—an independent researcher, currently employed by the Office for Disability Issues' Independent Living Review, who also works on policy related issues on behalf of the Network.

—  Dr Sue McGaw—who established one of the first UK services to support parents with learning disabilities in Cornwall and has developed many resources to support professionals and parents in this area.

2.  What the Network does

  The Network is currently funded by the Baring Foundation, with support from the Esmee Fairbairn Foundation. It was set up in June 2006, following the publication of a report undertaken by NFRC (funded by the Baring Foundation) on issues and positive practice in supporting parents with learning disabilities and their children (Tarleton et al, 2006). The Network aims to facilitate policy and practice change designed to enable families where a parent has a learning disability to stay together with their children.

3.  How the Network operates

  The Network operates in a number of ways:

—  A national Taskforce of parents, professionals and policymakers from key organisations, including government departments, meets twice a year to progress action on key issues.

—  A Parents' Network, facilitated by CHANGE, enables parents with learning disabilities to meet together to share ideas and experiences and feed these to the Taskforce. Parents from the Network also provide input into meetings for professionals (see below) and are involved in creating easy to understand, illustrated leaflets on important issues, like child protection and court procedures.

—  Multi-disciplinary Professionals' Networks are being set up or supported in different parts of the country through initial one day events organised by the National Network. These events provide an opportunity to gain and exchange ideas and information (eg on the new government guidance on working effectively to support parents) and to collaborate with colleagues in other professions.

—  A UK wide database of Network members has been established, through which members receive email updates on relevant issues and regular email newsletters. (Network membership is free of charge).

—  A Scottish Network—also operates, coordinated by SCLD, with regular meetings.

OUR EVIDENCE

4.  Numbers

  There are no precise figures on the number of parents with learning disabilities in the population but it is generally accepted that their numbers are rising and that their needs for support have not been adequately addressed by health and social services (Booth, 2000). The recent national survey of adults with learning disabilities in England found that one in 15 of those interviewed had children. 48% of these parents were not looking after their own children (Emerson et al, 2005).

5.  Policies

  National learning disability policies in both England and Scotland state clearly that parents with learning disabilities should be supported appropriately "to ensure their children gain maximum life chance benefits" (Department of Health, 2001; Scottish Executive, 2000). Other (non learning disability specific) policies also provide a context where the presumption is that children should be supported to stay with their families and that parents with additional needs should receive the support they need from statutory services working collaboratively (eg. Every Child Matters; The National Service Framework for Children, Young People and Maternity services). In practice, though, parents with learning disabilities are far more likely than other parents to have their children removed from them. Research suggests this happens in around 50% of cases (Tarleton et al, 2006), as a result of the lack of appropriate support to the family and concerns about the welfare and development of the children.

6.  Barriers to support

  Our research (executive summary of findings attached) identified a range of barriers to parents receiving the support they needed. These included:

—  Negative, or stereotyped, attitudes about parents with learning disabilities on the part of some professionals and a lack of knowledge and experience of how to work with them.

—  Parents were often given differing, sometimes contradictory, advice from the different professionals involved with them on how they should handle their children, so confusing them and compounding any difficulties they were already experiencing.

—  Parents were frequently "disengaged" with services because they felt staff had a negative view of them and "wanted to take their children away".

—  Referrals to support services were too late to be of optimum use to the family, because professionals did not realise parents had learning disabilities and parents were not known to learning disability support services (often because they had managed without formal support until their baby arrived).

7.  Research evidence

  Research indicates that adults with learning disabilities can often be good parents to their children, when provided with the ongoing emotional and practical support they need. (eg Tarleton et al, 2006; SCIE, 2005).

8.  The role of professionals

  Professionals who understand the needs of parents with a learning disability can play a valuable role in raising the awareness of other staff (eg midwives, children's social workers) about their support needs and the best ways of working, eg the need to offer advice in a consistent fashion, in "bite-sized" chunks, and in easy to understand language.

9.  Strategies for positive practice

  The following are also important:

—  Early identification of parents with learning disabilities—Professionals need to be able to identify if parents have a disability so that they can develop care pathways for them. Protocols for joint working between different services are also needed to support parents and their baby.

—  Easy to understand information—Parents with learning disabilities need accessible information on every topic to do with pregnancy and child rearing, from the antenatal stage onwards. CHANGE's publications, like You and Your Baby, are good examples of what is needed. You and Your Baby was funded by the DfES. But at the moment parents with learning disabilities do not routinely get given a copy. This needs to change.

—  Appropriate assessment—of parents' support needs, should be based on their competencies (ie building on what they can do) rather than focussing simply on their IQ level and what they can't do. There needs to be enough time for them to be given a proper explanation, in words they can understand, of what is going on.

—  Skills training and support—This needs to be available, in appropriately accessible formats, and on an ongoing basis, as children develop and families' needs change. A useful resource on what works for parents with learning disabilities and their children is the Barnardo's publication by Sue McGaw and Tony Newman: What works for parents with learning disabilities? (2005).

—  Access to parenting groups—Here parents can advise and support each other about what works for them. Parenting groups can reduce parents' isolation and provide them with the chance to make contact with staff and seek guidance on an informal basis as issues—like bullying and harassment—arise.

—  Effective multi-agency working—between children's and adult services is vital, as is partnership working between health, education, social and housing services, so parents are well supported and given consistent messages about what is required of them, in order for them to keep their children.

—  Advocacy—This is especially important when parents are involved in child protection and judicial proceedings, to help ensure their case is represented adequately and from their point of view. Mencap's recent publication, Providing the right support to parents with a learning disability, illustrates clearly the difference that advocacy can make to parents' ability to keep their children at home with them.

—  Child protection awareness—This is needed by ALL professionals if they are to engage appropriately with other services. If ongoing support is provided to parents, this can prevent relatively small difficulties escalating into child protection concerns and procedures.

—  Child protection and the courts—Parents need easy to understand information and explanations about these processes and the roles of all the different professionals involved. They need extra time with solicitors for this reason, and support to visit the court beforehand. Solicitors need to ensure that reports put to the court are appropriate and proceedings are slowed down enough so parents have a better chance of understanding what is going on.

—  The need for training—Only half of the staff in the study by Tarleton et al had received any training for their role in supporting parents. They wanted training on child protection, on the best ways of assessing parents' support needs and on strategies to support their parenting.

10.  Good practice guidance and the Disability Equality Duty

  In June this year one of the recommendations of our research—that good practice guidance for professionals on how to support parents with learning disabilities should be produced—was realised with the publication of Guidance from the DH/DfES (2007). The guidance acknowledges that "there is little evidence of effective working between adult and children's services. Children's services practitioners, and adult learning disability workers, rarely have a good working knowledge of the policy and legislative framework within which each other are working" (p.4) The guidance aims to address this situation and "to assist local authorities to fulfil their disability equality duty to promote equality of opportunity for disabled people. It will do this by helping to ensure that people with learning disabilities have equal opportunities to be parents and bring up their children, and that parents with learning disabilities have equal access to family support services" (p.5)

11.  Implementing the guidance

  Our Network is running three events for professionals in different geographical areas on what this guidance means for them in practice. It is clear, however, that much more needs to be done in this area. All of our workshops have been heavily oversubscribed within days of their announcement. There are currently no plans from the DH/DfES (as was) to run any events to ensure that information on the guidance is well disseminated to the professionals who should be implementing it in practice.

12.  Funding support services

  We are aware that since the publication of our report, at least one of the examples of good practice we cited—a community service for parents with learning disabilities in Stockport—has closed because of funding problems. Given current pressures on local authority budgets it seems all too likely that this situation will be replicated elsewhere.

CONCLUSION

  We remain deeply concerned that the rights of parents with learning disabilities and their children to a family life, as provided by Article 8 of the Human Rights Act1 will continue to be infringed, despite the fact that that the financial costs to the state of placing a child in care exceed the costs of providing appropriate and timely support to the family, so that they are able to stay together as a family.2

REFERENCES

Booth, T, 2000, Parents with learning difficulties, child protection and the courts, Representing Children, 13 (3),175-188.

CHANGE, 2004, You and your baby, Leeds, CHANGE.

Department of Health, 2001, Valuing People: A New Strategy for Learning Disability for the 21st Century, London, The Stationery Office.

DfES, 2004, Every Child Matters, London, The Stationery Office.

DfES/DH, 2004, National Service Framework for Children, Young People and Maternity Services, London, DH.

DfES/DH, 2007, Good practice guidance on working with parents with a learning disability, London, DH.

Emerson, E et al, 2005, Adults with learning difficulties in England 2003-04, www.ic.nhs.uk/pubs/learndiff2004

McGaw, S and Newman, T, 2005, What works for parents with learning disabilities?

Ilford, Barnardo's.

Mencap, 2007, Providing the right support for parents with a learning disability. Evaluating the work of the north east parents' support service and the Walsall parents' advocacy service, London, Mencap (for executive summary of findings go to www.right-support.org.uk)

Scottish Executive, 2000, The Same as You? A review of services for people with learning disabilities. Edinburgh, The Stationery Office.

Social Care Institute for Excellence (SCIE), 2005, Helping parents with learning disabilities in their role as parents, www. scie.org.uk

Tarleton, B, Ward, L & Howarth, J, 2006, Finding the right support? A review of the issues and positive practice in supporting parents with learning difficulties and their children, Bristol, Norah Fry Research Centre/Baring Foundation (www.right-support.org.uk)

NOTES

1  See the following extract from The British Institute of Human Rights publication, Your Human Rights: A guide for disabled people (BIHR, 2006),p.19:

"Sometimes public authorities must do something active to protect your family life. This might mean providing support to help your family live together. For example, this may include providing educational or financial resources for disabled parents who need this support in order to look after their children.

CASE EXAMPLE

"A couple in Germany, both with learning difficulties, had two children. The children were removed from their parents some years after their birth as a court decided the parents were incapable of bringing them up. However, there was no evidence of neglect or bad treatment. The children were separated and eventually fostered. They had very little contact with their parents after this. The European Court of Human Rights said the right to respect for family life was breached in this case. The separation of the family was not proportionate. The authorities could have provided educational or financial support to enable the family to stay together."

2  An uncomplicated case where a baby of a parent with learning disabilities is placed for adoption costs around £106,000 in total (figures supplied by a specialist learning disability team). More complicated cases can cost up to £500,000 (ODI, 2007, The costs and benefits of independent living, London, Office for Disability Issues.)

Where children remain in local authority care (which is more common), average costs for residential care are about £2,100 per week and for foster care, £438 per week (Curtis, L and Netten, A 2004. Unit Costs of Health and Social Care, Canterbury: University of Kent, PSSRU.) Outcomes for young people who grow up in care are very poor.

ENCLOSURES/ATTACHMENTS

1.  Finding the right support? A review of issues and positive practice in supporting parents with learning difficulties and their children (Executive summary)

2.  Finding the right support? A review of issues and positive practice in supporting parents with learning difficulties and their children by B Tarleton, L Ward and J Howarth, Baring Foundation, 2006 (Full report)

  Both the above can be downloaded at www.right-support.org.uk

25 July 2007