Speaking up for families

Reiz Evans, from UK charity Advocacy Partners Speaking Up, discusses how the service provides a voice to parents with learning disabilities and mental health needs, to offer them equal rights and opportunities.

Advocacy Partners Speaking Up is a national charity that operates to ensure that people marginalised for their disability or mental ill health have a voice and the same rights and opportunities as others. At the core of this is advocacy support.

Since 2008, we’ve delivered an advocacy service for parents with a learning disability in Cambridgeshire through Big Lottery funding, and extended this to Peterborough through the Department for Children, Schools and Families Parenting Fund.

The advocacy services target needs identified through our observations or local and national agendas, such as the Department of Health’s Valuing people now. It is estimated that 50% of parents with a learning disability have their children removed from them with many having no further contact throughout their life, compared to only 6% of parents in the general population. The key contributing factor identified for the high removal is the lack of support available for the parent (McGaw and Newman). The child’s social worker is often the parent’s only professional input outside of a solicitor. This can be problematic as their primary focus is the child’s safety and well-being, rather than that of the parent.

Lack of parental support exacerbates other challenges, including a confusing and intimidating process, lack of appropriate and clear communication, and negative attitudes.This can cause parents to further disengage.

Early involvement

Our advocacy service aims to be involved as early as possible. The advocate will work with the parent to ensure they are fully aware of their legal and human rights and the full range of services they can access for support. We also support them to create and follow an action plan, which reflects their aspirations and wishes in relation to birth and parenting, and identifies the potential skills gaps and issues which they might face. We ensure that they receive independent representation when meeting professionals, so that their voice is heard and issues are made visible.

Advocacy is successful

Feedback from parents and advocates indicates that we’ve been successful with 75% of the parents we’ve worked with. Success is measured in terms of awareness of rights and entitlements, involving parents in the process and decisions in a meaningful way, and increased parental ability to self-advocate. Professionals involved have increased their understanding of the parent’s needs and been able to ensure the right support and services are available.

However, parents are often still hesitant about accessing the services and only 40% of parents consistently engaged with them. Another challenge has been in observing an improvement in parenting ability: 60% of parents understood what is required as ‘good enough’ parenting but only 30% demonstrated an improvement. Also, although the rate of removal is lower with advocacy input, the number of parents demonstrating a turnaround whereby the family unit is maintained is modest.

We’ve been running a parenting forum to provide an opportunity for parents to receive and provide peer support. We are also establishing links with the local authority and parenting organisations to enable parents to have a collective voice in influencing the local parenting strategy, which could see some long-term impacts. We have also been running professional seminars to share best practice. Our recent seminar on the theme of communication triggered interesting discussions and ways forward for professionals as well as parents in improving practice.

Although the advocacy service, forum and seminars are fairly new initiatives, we have supported parents to achieve some excellent outcomes and enabled new opportunities for parents to have a much greater voice and to be in a position of influence. There are challenges which are characteristic of the complicated and multi-agency nature of the work. However, through the local agendas and the relationships our services have developed, we are moving in the right direction. The biggest challenge for us is whether we are able to carry on with the work when the funding finishes in 2011.


Department of Health. 2009. Valuing people now: a new three year strategy for people with learning disabilities: ‘Making it happen for everyone.’ London: The Stationery Office.

McGaw S. Newman T. 2005. What works for parents with learning disabilities? Essex: Barnado’s, www.barnados.org.uk/wwparwld.pdf

Case study: advocacy support for child protection conference

Lucy has learning disabilities and mental health needs. She recently had a baby girl who was put on a child protection plan due to concerns about Lucy's mental health and also domestic violence with an ex-partner when Lucy was pregnant.

Lucy wanted advocacy support to attend core group meetings and the next child protection conference as she had been really upset after the last conference. The professionals discussed Lucy being sectioned under the Mental Health Act in 2004 and kept referring to her mental health assessment from 2004. Lucy tried to tell them how much better she was now and how she had been  discharged from mental health a long time ago but no one listened. The professionals brought reports to the conference that Lucy hadn't read before and she felt that a lot of information went over her head.

Lucy felt frustrated that no one had listened to her and that she hadn't been given the chance to have her say. The advocate supported her at core group meetings and is helping her prepare for the next conference. Before each meeting the advocate helped her think about what she wanted to say and how best to say it. Together they wrote lists of questions and points for Lucy to remember. At the meetings, the advocate made sure Lucy was given the chance to express her views and ask questions. To help prepare for the conference, the advocate supported her to ask the professionals to provide a copy of their reports to her at least two days before the conference. The advocate discussed how they would work together to make sure her voice was heard. The advocate supported Lucy to challenge the use of old reports about her mental health and to ask for her support worker and her current psychologist to be invited to the conference, so that all professionals would have the most up-to-date information about her mental health. 

Lucy is still nervous about the conference, but says she feels more confident and powerful now she has the support of an advocate. Lucy now has a fair opportunity to keep her baby.

NB: name has been anonymised.


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