We’re continuing our series of interviewing thought leaders in the disability focused part of the third sector (you can read our opening interview with Mark Lever here) . Today we’re very pleased to be interviewing the ever lovely Virginia Beardshaw, who is Chief Executive of I CAN, the children’s communication charity. Virginia was awarded an CBE this year in recognition of her tireless work and she was kind enough to make some time to answer my questions.

JR: So you’ve written on a wide range of issues related to disability, and it’s rare to find someone with such a strong research and policy focused background in a third sector leadership role – do you feel that you are using the same set of skills in your Chief Executive role? And have you plans for more writing in the future?

VB: When I completed the report of the King’s Fund’s first Commission on the future of health services in London I was drained. It was an immensely complex and politically sensitive piece of work. I definitely wanted to do something different. I also had the pious notion that I ought to pitch in and try to make some of the necessary changes happen.

So I entered the NHS at Director level – by far the hardest thing I’ve ever done careerwise. I got a few things done, but found NHS culture unappealing. When I had a chance to return to the voluntary sector to work with the wondrous Nick Young at the British Red Cross I grabbed it with both hands. This resulted in one of my career highs – being a tiny cog within the Red Cross movement as it responded to the 2004 Boxing Day Tsunami.

At I CAN I’ve used my policy background and influencing skills to make it clear to decision makers that speech, language and communication skills are central to children’s life chances.

But being a CEO is completely inimical to being a writer – all the multitasking is too much of a distraction. Writing is undeniably still the most satisfying thing of all to do, though. I suppose I might get back to it one day, but at the moment I content myself with blogging.

JR: I CAN made some waves in early 2014 by setting up its own social enterprise to deliver training courses.  Can you talk us though why I CAN used that model and how been working out?

VB: In our former business model we had 90+ partnerships with Local Authorities running different I CAN programmes, which we were immensely proud of. But as austerity bit we could see the writing on the wall: Local Authorities were being hollowed out and budgets were being devolved to schools and early years settings. We had to make a shift which we termed ‘moving from wholesale to retail’.

We were immensely lucky to have a great deal of help from our friends at The Makaton Charity, since – with their full permission and active aid – we copied their business model and applied it to I CAN Programmes. We now have 600+ I CAN licensees which take our programmes out to schools and early years settings all over the country. Using licensing has greatly increased the numbers of children and families we can reach, and we also have a new source of unrestricted income.

JR: As Acevo vice-chair you have a wide lens for the sector as a whole – what are the changes in the landscape that you think should be getting more attention?

VB: I am surprised there has not been more attention paid to what are in fact the biggest changes to SEND legislation in a generation within the Children and Families Act 2014. This gives families an opportunity to influence and choose how their child’s needs are met. In addition to this, with Education, Health and Care Plans, this is the first concerted effort to bring together the different provisions to meet a child or young person’s complex needs.

I CAN has been deeply involved in responding to these changes, along with The Communication Trust, a Consortium of 50 not-for-profit organisations with an interest in children’s speech, language and communication, which we host.

To give an example of the SEND reforms; vast majority of families with children with special educational needs and disabilities will tell you that they face a dearth of information, advice and service choice. To change all this, later this month the SENDirect website will launch, aiming to provide a ‘Trip Advisor’ type service for children and young people with SEND and their families, so they can get the information and help they need.

The website is the fruit of a collaboration between nine charities. I CAN is a founder member. Charities don’t often work closely together on service development, so SENDirect is an unusual and welcome development. I am really excited by its potential to revolutionise the experience of children and young people with disabilities and their families for the better.

I hope this kind of collaboration becomes much more common. Charities have been asked to deliver more than ever before over the last 5 years but with reduced funding – we need to look at how the sector works with government and other partners so we can ‘restore and unleash the potential of our third sector’ . How to strengthen the sector with the election and potential change of government is a key question for ACEVO now.

JR: As a children focused-charity,  I CAN is well know for doing great work, but the perennial problem of children’s charities is always ‘what next’.  Does I CAN have a pathway for service users who reach adulthood and still have needs.

VB: Students at I CAN schools are supported carefully to move on to the right next stage for them, and we have good partnerships with other schools, colleges and employers. I CAN is exclusively a children’s charity but with the SEND reforms meaning that support for young people continues until they reach 25 years of age, this gives us opportunities to extend our work – one of the programmes we have developed and piloted over the last few years, for example, supports young people in developing the communication skills they need for the workplace and wider community.

JR:What are the big things you’ve got planned for the rest of 2015?

VB: 2015 promises to be as busy as the last! I CAN is developing two new interventions to support children aged 3-4 and 7-10 years old with delayed language and communication skills. These are being piloted at the moment.

This is based on our highly successful Talk Boost programme, which is being used with children aged 4-7 years old with delayed language in over 1000 primary schools across the country. We know that through this evidence-based programme, children can make between 12-18 months progress in their language skills, with many children no longer needing additional support.

This is life changing for children – meaning they can understand the language going on around them; they can learn at in the classroom and play with friends. So we are excited about the upcoming results of our pilots and rolling these programmes out across the UK.

In February we have our Chatterbox Challenge, our annual early years sing-along, where thousands of nurseries and other early years settings across the UK take part, developing their children’s communication skills whilst raising money for us. We really rely on donations to ensure we can continue our work – and we find that our supporters really love the Challenge and all hold unique events to help raise awareness and funds for us. We are extremely pleased to have the support of Entertainment One for another Chatterbox Challenge and a new partnership with Ben & Holly’s Little Kingdom.

We continue to be proud of our two Ofsted ‘Outstanding’ schools, Meath in Surrey for children aged 4-11 and Dawn House in Nottinghamshire for children aged 5-19. Both continue to directly support children and their families with severe and complex communication needs.

And I CAN is a founder member of the Read On. Get On. campaign which has rightly emphasised the importance of early language development as the foundation of children’s literacy. July will see a big push around this, which we are very much engaged with already.

JR: So you have a long association with, and personal experience of disability – when you received your CBE this year, did it feel like the end of a long journey?

I am beyond thrilled to be appointed CBE in the New Year’s Honours List. It is a testament to the fantastic work that we have been able to do at I CAN. It has also been very humbling to receive so many congratulations and messages from friends and colleagues from across my career. And I am very excited to have been invited to Windsor Castleto receive the honour; the big dilemma there is, ‘to hat or not to hat’?

My journey at I CAN started in 2005 when we championed real change for children and their families – starting with our awareness raising campaign Make Chatter Matter, took us through the Bercow Review of services for children with speech and language needs in 2007/8 and has taken us through tothe emphasis on communication skills in the Children and Families Act 2014.

But to answer your question, there is still so much more to do. There are still over a million children in the UK today who struggle with their speech, language and communication. So we will be continuing our work to ensure their needs are understood and met: developing interventions to enable children with language delay to catch up with their peers; working with partners to ensure that policy makers understand about the importance of language and communication skills for children and young people; and making sure that children and families have the information and support they need to make useful – and sometimes difficult – choices in services to meet their needs.

Throughout it all I am guided by insights from my son Laurence – now aged 20. His struggles with language show me everyday how far we have to go, just as his many successes highlight the importance of helping every child gain the language skills they need to reach their potential.

It’s time for another set of interviews!

Regular readers will remember my series of a few months ago where I interviewed the MPs (and UKIP’s spokesman) to find out the disability policies for the four major parties.  This week I’m starting a new interview series: charity leaders. 

Today we welcome the wonderful Mark Lever – who has lead the National Autistic Society since 2008. Mark is a charming man in person and something that I particularly like is that he really does take things on board and isn’t afraid of saying ‘I hadn’t thought of that’.  Excellent qualities in a leader. Mark was also good enough to answer some questions for our readers 🙂

JR: So the NAS has a wide range of roles. It provides information, it provides services, and it lobbies on a number of issues relevant to their members.  As CEO do you find some of these take up more of your focus than others?

ML: As chief executive of a large and quite complex charity, it is a key part of my role to establish and lead an effective senior management team that takes responsibility for each area of activity that we are involved in.

It is important that the work we do, and our priorities, reflect the hopes and aspirations of people with autism. I therefore spend a lot of my time meeting children, young people and adults with autism to better understand the challenges they face.

I am lucky to have a team of excellent people providing strong leadership in each of their individual areas. I try to support their work by regularly communicating what we do, the impact we make and the changes we want to see – both internally and externally. It is important that our staff understand this, as it helps guide the work they do and explains how they fit into the bigger picture of the organisation. Externally, it is important that we communicate the changes we want to make to the likes of politicians, service commissioners and potential donors as their support is essential if we are to achieve our overall goal of helping people with autism lead the life they choose.

JR: On the topic of campaigning, many of the issues you campaign on (I’m thinking health and social care and education in particular) are relevant not only to Autism but also to many types of learning disability and disability in general, to what extent is this in your mind during campaigning? Do you focus entirely on your own members or is there high-level strategic collaboration between campaigning organisations.

ML: You are right to highlight the commonality of many of the campaigning messages across health, social care and education for much of the learning disability, mental health and physical disability sector. We therefore work closely with a number of national organisations to champion these messages and campaigns. It makes good sense to do this for a number of reasons: together we can speak with a ‘single, louder’ voice, we can develop our campaigns more cost effectively, and it gives us greater legitimacy to talk to senior politicians as the constituency we are collectively representing is far greater than the individual groups. I enjoy this form of collaborative working as you can learn much from your peers. There are a number of consortia that have been established for charities to work together in this area: the Care and Support Alliance (CSA), the Voluntary Organisations Disability Group (VODG) and the Disability Charities Consortium (DCC).

JR: You’ve been running NAS for six years now.  What would you say was the achievement you are most proud of in your time so far? And conversely, what’s the one thing that you’ve been grappling with but is turning out to be a bigger problem?

There are many things I am proud of – all of our wonderful staff working in our schools and adult services do a tremendous job helping people with autism lead the life they want to live, day-in and day-out. Our information and advice services provide a daily lifeline to many people living with autism who often do not know where to turn to get the support they need.

In terms of impact I would have to point to the Autism Act 2009. This was the first ever piece of disability specific legislation and put autism on the legislative map. Previously, autism fell between mental health and learning disabilities. The Act ensured there was a statutory duty placed on Government to produce a national strategy for adults with autism in England and attached certain statutory duties and responsibilities to this strategy – encompassing not just social care but health as well. Whilst we still have some way to go to ensure that all adults with autism get the support they deserve, we now have the legislative framework to enable us to put pressure on local authorities to deliver on their responsibilities.

JR: Autism is a spectrum condition. Does this make it difficult to get your message across? –And do you think thing that the ‘warrior parent’ narrative is accurate or even helpful?

ML: Autism is a spectrum condition that affects everyone in different ways which makes it almost impossible to communicate our message in a way that is relevant to everyone all the time. Also, we are involved in a wide range of activities which necessarily means that we communicate with a wide range of people every day to convey different messages. To commissioners we might be explaining the difference our services make and why we might need more (or less) funding; for politicians we might be communicating what we consider to be a social injustice; to donors we might be communicating why we need their financial support and the difference their donation could make. All of our communication is designed to get a particular reaction and the language and imagery we use is carefully chosen to ensure we get the best chance of achieving the reaction we require. It is impossible to come up with ‘one message’ to fit all situations.

Many of the parents we support have been battling the system to get an appropriate education for their children and the image of a ‘warrior parent’ or ‘warrior sibling’ tends to resonate with politicians and policy makers when trying to convey how the system is working against them and where change is needed.

Our recent ‘Careless’ campaign highlighted how the draft guidance attached to the new Care Act was not providing sufficient support in legislation to adults with autism. We believed that without the necessary guidance, many adults with autism would not receive the support and prompting they need to carry out basic tasks such as washing, eating and going out. Many would not receive the support they need to make and maintain relationships and many would be vulnerable to unscrupulous people seeking to take advantage of them. The imagery we used to support this campaign tried to convey this sense of loneliness and vulnerability. It did receive a small amount of criticism from people who felt this portrayal was negative. However, the campaign made an impact – it was our single most supported campaign and resulted in changes to the statutory guidance in all the areas we campaigned on. We realise the sensitivities around the use of language and imagery and work very closely with people with autism to test our campaigns before we launch them.

By way of contrast, when we are campaigning for support to help people with autism into employment we use very positive language and imagery around the real benefits that people with autism can bring to the work place. Our campaigns used the language of the ‘undiscovered workforce’ and ‘untapped talent‘ to get our message across, along with positive case studies of people who were successfully working and making a real impact for their employers.