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.