Posted: 30 September 2011

Why advocates matter

Imagine not being given a chance to say what you like, where you want to live or tell someone about your worries or fears.

Disabled children and young people with complex needs and severe speech, language and communication disorders live with these challenges. It is difficult for them to communicate without assistance.

Our new report ‘Someone on our side: Advocacy for disabled children and young people’ (full report, executive summary) emphasises that not only do these children have opinions and wants, they can express them and contribute to complex decision-making processes—if they’re supported through advocacy.

Advocates can make a huge difference

Disabled children and young people are more vulnerable to abuse and neglect, yet their participation in decisions that can make a major difference in their lives lags behind their more able peers. An independent, professional advocate can help change this.

Provided by The Children’s Society and other organisations, advocates facilitate a disabled young person’s participation in decision-making by ‘speaking up’ for them or supporting them so that their views and wishes are heard when decisions are made about their lives.

For many disabled children and young people, this means listening to their opinions. For children who have very complex communication needs, advocates would use observation, non-verbal communication and information from those who know the young person well.

Many children are not receiving these vital services

Our study and others indicate that there are high levels of unmet need and that accessing services is particularly difficult for disabled children and young people, and those with communication needs.

These children’s needs are unmet primarily due to unclear, inconsistent routes of obtaining an advocate; the time an advocate needs to properly understand a young person’s wishes; and resistance advocates receive from other professionals.

Difficulties young people face when trying to secure an advocate

Specifications for advocacy services vary tremendously between local authorities. This limits children’s access to advocates because there is no uniform point of contact and referral route. Often, information on advocacy services for disabled children and young people is not readily available or accessible making it incredibly difficult for them to know enquire about services or self-refer.

It takes time, skill and experience to earn the trust of children with complex needs. When that trust is established, a young person more freely expresses their views. Unfortunately, many agreements between local authorities and the providers of advocacy services lack a sufficient amount of time spent with children. There is also a lack of training opportunities concerning young people’s speech, language and communication needs.

Advocates also report that they occasionally experience resistance from other professionals who think disabled children are unable to express an opinion.

Benefits of advocacy

The process of advocacy brings significant benefits to children. For example, an advocate can improve a young person’s confidence and self-esteem. It also helps them make informed decisions, and enables them to speak out about abuse and neglect.

Advocacy can result in improvements to services and quality of life. More appropriate placements, changes to personal care, establishing likes and dislikes are some of the ways advocates can contribute to improving young people’s daily lives.

Advocacy can reveal hidden problems. Although advocates are generally commissioned to address a single issue, once their relationship with an advocate develops, young people often raise multiple issues.

Local authorities can use information from advocates to help improve care packages, resolve complaints more quickly, and change perceptions of disabled children and young people.

'Get an advocate now!'

Disabled children and young people are incredibly positive about advocacy services but say that advocacy services need to be more accessible and visible. They particularly value the independence of the advocate and the relationship of trust and respect that develops between them.

Their words sum up how positive and powerful advocacy can be:

‘It’s not easy but I can talk to Neil (advocate). He’s been there for me and helping me.’

‘I’m just sat there and like they’re all talking about things but he doesn’t talk about me, he talks to me.’

‘Get one (an advocate) now! Get one and look back at what happens. Leave the past. Take all the rubbish out of your head.’

Improving advocacy services

Disabled children and young people must be able to express their wishes and feelings about their lives: it is their right to do so and we fail them terribly if we do not listen to their views and take these into account.

Independent, professional advocacy can enable disabled children and young people to complain if necessary, ask for changes to be made to their daily care, and tell those making important decisions about their lives what they would like.

That is why we continue to campaign for improved specialist advocacy provision for disabled children and young people.

Recommendations

Our recommendations to improve advocacy services are:

  • Local authorities should ensure that independent advocacy services can provide specialist skills in working with disabled children, including those with complex communication needs.
  • Local authorities should identify those who are eligible for advocacy, integrate the arrangements for commissioning and provide one point of contact and referral route.
  • Information should be provided in accessible formats to disabled children and young people. Information should also be provided to foster carers, residential care staff, Independent Reviewing Officers, and young people's parents or carers.
  • The availability and accessibility of advocacy services should be monitored and learning from individual advocacy cases should lead to improvements in services for all disabled children and young people.
  • A right to advocacy for all disabled children placed away from home should be embodied in legislation.
  • Training and skills development to support advocates working with disabled children and young people, particularly those with communication needs.
  • Funding agreements should enable advocates to have the necessary time to spend with the child, in order to facilitate them expressing their views.

By Elizabeth Lovell, Policy Adviser for The Children’s Society