Being Valued: Disabled children’s rights to advocacy

Anita Franklin

Definitions of advocacy“Advocacy is about speaking up for children and young people and ensuring their views and wishes are heard and acted upon by decision-makers” (Get it sorted guidance, DfES, 2004)

• Giving children a “voice” - problematic for those with CCCN

• Key elements of an advocates role are representation, support, empowerment and protection of rights (Oliver et al, 2006)

• ‘Pure’ advocacy V ‘best interests’“The aim of advocacy is to help the young person voice their opinion and pursue what they consider to be in their best interests, which you or other professionals may not necessarily agree with” (Advocate).

• Many types of advocacy – focus on independent professional advocacy – short-term/crisis advocacy

Non-instructed advocacy • Advocates cannot be instructed by child, child cannot understand advocates role or take part in complex decisions

•Non-instructed advocacy includes observations, gathering information from others and presenting this within a rights framework

•Does raise ethical dilemmas but is this better than no representation, or a lack of an independent view?

•Limited research evidence but some cases showing very positive outcomes

Non-instructed advocacy “You’ve got to acknowledge that the disability will influence the way you work with the young person….He doesn’t communicate verbally; I can tell he likes certain things and not others from experience, but even knowing his dislikes and likes and then being able to say to him ‘where would you like to live? is implausible. That’s absolutely no way I can do that. What I can do is to look at what does work for him, what doesn’t, making judgements after seeing him, talking to staff who know him, talking to parents, talking to anyone who knows him really. But at the end of the day, I still don’t know what he really thinks. That’s always a dilemma. I can only base it on my experiences of him, what would an average 18 year olds wishes and what kind of things would this sort of young man be looking for. For example, he likes his music on loud so he would need to be housed with people who wouldn’t object to him having his music loud” (Advocate).

Non-instructed advocacy Case study example: Paul, aged 15, was living in residential placements on weekdays and with his mother at weekends. Paul used minimum verbal communication. As he was getting bigger and his behaviour started to deteriorate, a new permanent placement had to be found where he could remain all year round. Using specialist skills to understand Paul’s issues, the advocate observed that Paul may have had problems with his eye sight. However, nobody knew whether Paul had taken an eye sight test. On the advocates request a test was conducted and a sight problem was discovered, showing gradual deterioration of sight which was affecting Paul’s behaviour as he would visualise big shapes and shadows instead of people approaching him, which frightened him and caused changes in his behaviour. As a result Paul received health support to manage the sight problem.

The need for advocacy• Children in care have a right to have their views

heard (Children Acts, UNCRC, CRDP, Children Leaving Care Act, Adoption and Children Act, Mental Capacity Act, Mental Health Act)

• Access to advocacy included in guidance and policy (Care Planning and Placement Review Guidance, Statutory Guidance for IROs, Roles and Responsibilities of the Lead Members for Children’s Services)

• Limited, but increasing evidence that it leads to improved outcomes

• Safeguarding (Munro review, Ofsted report)• But still limited involvement of dcyp

Research evidence• Severe lack of research on advocacy for dcyp• Generic advocacy =

– 2010- 2011 £20million spent on advocacy services less than 1% of LAC social care budget (DfE)

– One third of LAs do not spend anything on advocacy for LAC– Approx. 100 services in England run by LAs or Vol. Orgs

often have strict service criteria based on age, issue or location (Oliver et al, 2006; Brady, 2011)

– Issues advocacy cover includes legal, complaints, contact issues, education, health, leaving care, transition, participation in decisions (reviews), placements, relationships etc etc etc

– Lack of awareness of advocacy and its potential– Some evidence of positive outcomes

• We don’t know... how many LAC receive advocacy, what issues they required support with, or levels of need. Lack of evaluation of practice or recording of short and long term outcomes

• Explore the nature, processes and outcomes of advocacy services for disabled children and young people in England

• Identify and explore the issues that impact upon the provision of advocacy for disabled children and young people

• Survey of advocacy services (n = 35)• 12 case studies

Someone on our side – Objectives and methods

Research findings

• Only small numbers of dcyp receiving advocacy

• Advocacy for disabled children and young people living away from home was not always provided

• DCYP had little choice over who advocates for them – 1/3 services only had one advocate for disabled young people

• 80% of services provided non-instructed advocacy but very small numbers

• Lack of accessible info about advocacy – only ½ services provided this

Research findings – what works• Quality of the relationship between advocate and child• Rights based approach• Variety of methods to engage and empower• Creative and flexible approach• Shared commitment across services eg: SW, Managers • Training and skills development for advocates• Funding !

Disabled young people’s experiences/views of advocacy

• Little research evidence from dcyp – Importance on informality, caring and relational

aspects of advocacy role– Independence and uniqueness of the role– Felt valued, respected, included, empowered– Didn’t want the advocate to work with them on a

single issue, wanted long term engagement – Process as important as the outcome

Outcomes of advocacy • Process outcomes – Personal development

• Improved communication; enhanced self-esteem, confidence, empowerment; increased levels of trust, more informed and independent

• Changes in attitude towards yp and participation

• Service outcomes – Individual• More appropriate services for dyp and their families; improved

placements, reduction in pain, being protected, smooth transition

• Service outcomes - Strategic level ??????• Non-instructed advocacy – improved services for child and their

families

Challenges still remaining • Limited/restricted access to children to inform them of advocacy• Lack of consensus on non-instructed advocacy• Lack of appropriate advocacy training• Limited awareness of advocacy amongst profs and families• Lack of respect for advocacy• Advocacy often commissioned when case reached crisis

point/complex• Often unlocked other issues, or issues did not get resolved so

case took a long time• Parents (support or barrier) • Need to establish strict boundaries with children – often seen as

a friend • Not extrapolating/learning across individual cases

Useful references• Brady, L. (2011) Where is my advocate? A Scoping report on advocacy services for

children and young people in England. Office of the Children’s Commissioner. • Dept. For Education and Skills (2004) Get it Sorted: providing Effective Advocacy

for Services for Children and Young People Making a Complaint. DfES, Nottingham• Franklin A and Knight A (2011) Someone on our side: Advocacy for disabled

children and young people. The Children’s Society, London. • Franklin A and Osborne (2009) Independent Reviewing Officers Communicating

with Children with Complex Communication Needs. An Investigation for DCSF. The Children’s Society, London.

• Knight A and Oliver C (2007) Advocacy for Disabled Children and Young People: Benefits and Dilemmas. Child and Family Social Work, 12, pp 417-425

• Oliver, C., Knight, A. and Candappa, M (2006) Advocacy for looked after children and children in need. Report for the DfES, Thomas Coram Research Unit, Institute of Education, London

• Pona, I. and Hounsell, D. (2012) The value of independent advocacy for looked after children and young people. The Children’s Society, London.

• Townsley, R., Marriott, A and Ward L. (2009) Access to independent advocacy: An evidence review. Office for Disability Issues.

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Contact details: Anita Franklin,

Reader in Children and Families Research,anita.franklin@coventry.ac.uk

Tel: 0247 679 5834

Centre for Children and Families Applied Research