In advocates’ shoes – Autumn 2022

In this issue we hear from Emma – a specialist advocate for children and young people with disabilities at Coram Voice who has worked in her role for almost 10 years.

Her specialist advocacy support includes both direct work with disabled young people, and upskilling professionals across the sector so that they feel better equipped to advocate for the rights and wishes of young people with disabilities.

Can you start by introducing your role? What does your day-to-day as a specialist advocate look like?

There are two main components to my role. Firstly, I hold a small caseload of young people, mainly with complex disabilities. I undertake social care focused advocacy, such as attending meetings, making complaints and sometimes supporting them to access legal advice. I am also the visiting advocate for a residential specialist school.
Secondly, I devise and deliver training and publications, and offer professional advice, as part of our specialist advocacy service. This means that other advocates working with disabled children and young people can contact me if they are struggling with a particularly complex situation.
I believe it’s a unique role, and I am thankful that I am able to use my direct experience as an advocate to reach many more children and young people by supporting other professionals.

How would you explain what non-instructed advocacy (NIA) is to someone new to this term? What does it entail?

I think Henderson’s 2006 definition is still a great starting point: “Non-instructed advocacy is taking affirmative action with or on behalf of a person who is unable to give clear direction of their views or wishes in a specific situation. The non-instructed advocate seeks to uphold the person’s rights; ensure fair and equal treatment and access to services; and make certain that decisions are taken with due consideration for their unique preferences and perspectives”.
I would add to this, that we are here to promote the young person’s wishes and rights only. Always remember that if it’s not advocacy, it’s not NIA. What I mean by this is that giving your view on what is in the child’s or young person’s best interests, or offering other opinions as a worker, should never be seen as NIA, simply because it’s not advocacy!
In terms of what this entails, it’s a combination of approaches that are covered in the training I deliver. They include: person-centred observations and interactions with the child or young person; questioning the rationale for decisions when a child or young person cannot do this for themselves; challenging breaches of rights; and acting as a witness observer who speaks up if something just doesn’t seem right!

How do you identify rights violations and effectively challenge them on behalf of children and young people who are unable to communicate their situations or their specific wishes to you? Can you share one or two examples to help illustrate this?

The first step is to understand the young person’s unique, current situation and the next step is to compare this to what the law says must or should be happening. If these are different, you have identified a rights violation.

If a child cannot tell you what they want, you need to spend time with them, gather information from the key people in their life, as well as find out what their rights are. When it comes to challenging, it’s important to stay very focused in your verbal and written representations, stressing the child or young person’s legal rights, and sharing what they are telling you about their wishes and feelings through their behaviour.
We often see disabled children who are about to turn 18 and have no transition plan for adulthood, no suitable accommodation or no support package in place. Similarly, we see disabled care leavers without personal advisers and pathway plans. Both of these scenarios represent a clear breach of rights. Other advocates who support disabled young people during their transition to adulthood and adult support services may find our advocacy toolkit helpful.

How do you work with and include the parents and carers of the children and young people you advocate for, while making sure you are led by the wishes, feelings and rights of children and young people?

It’s essential to take time to clarify my role and boundaries with parents and carers. Those who look after disabled children rightly see themselves as advocating for their child, but it is different to the professional role of an independent advocate. We need to help parents/carers understand that we focus on children’s rights and wishes, not their best interests. The information parents and carers provide is vital to our work, as they know the children better than anyone else. However, we also need to explain that we can’t take instructions from them, because we have to remain independent in order for our role to have any power. So we must work closely with the parent, but not for them. For many of them, this will be different to anything they have experienced before, so it’s important to be patient and understanding, while reiterating the nature and goals of advocacy.

What tips would you give to other advocates who may not be experts in supporting children and young people with disabilities to help them give the best advocacy help possible?

My best advice would be to focus on the child or young person as an individual, rather than a disabled person. It can be daunting to work with a disabled child if you are too worried about your own expertise. Instead, make sure that you get to know the child and ask those around them the best way to communicate.

And please don’t forget that disabled children and young people have the same rights as other children and young people – they have the same right to family life, to good quality education, to be included in decisions that affect them, to be looked after and supported after leaving care if they are unable to live with their families. If these rights are not respected and upheld, you should feel confident to help them question and challenge this, regardless of their disability. It may be that a young person also has certain rights because they are disabled: for example the right to extra support to access education, the right to adaptations in the home, or extra care and support. However, these are in addition to (rather than instead of) their rights as looked after children or care leavers!

And finally, can you share some of your proudest moments as a specialist advocate for children and young people with disabilities?

The proudest moments are often when something tangible happens; something that everyone had been telling the child wasn’t possible.

There have been a few instances when I have successfully advocated on a disabled young person’s behalf, when they have wanted to challenge a move to a different accommodation. This has resulted in them being able to continue to live in homes where they were happy and settled. Last year I worked with a disabled care leaver who was being left to struggle financially, without the benefits and leaving care allowances that he was entitled to. Through complaints, we managed to get him over £17,000 of backdated payments, which he just couldn’t believe!
However, I’m just as proud when I can help groups of children or young people and not just individuals. It was heart-warming when another advocacy service told me they started providing NIA for the first time, as a result of the training I provided. Then recently, Coram Voice received a grant to support some disabled children who are not eligible for statutory advocacy. This had always been a dream of mine since I joined Coram Voice, so that was quite a moment when I knew we finally had the funding to launch our new Disability Outreach Project!

A huge thank you to Emma for speaking with us!