In our upcoming edition of Talking Sense, Sense’s CEO Richard Kramer, and our first CEO, Rod Clark, reflect on Sense’s amazing journey, and what it has meant to them.
It’s incredible that that Sense has been running for 65 years. At the beginning there was just a small group of families who came together – led by Peggy Freeman and Margaret Brock – who were desperate for information and support for their deafblind children. But now Sense has grown into a charity with an international reputation for supporting people with complex disabilities. One thing that hasn’t change is that families and children we support remain at the core of everything we do.
How did your relationship with Sense begin, Rod?
Before I came to Sense in 1981, I had known a number of families from my time at RNID – amazing people like Peggy and Peter Freeman They’d been battling since the fifties for their children who were deafblind as a result of rubella. They’d campaigned for their children to get an education, and now they needed somewhere for their young adults to live in the future – just like parents still do today. At that time going into a long stay hospital or returning home were the only options really and that just wasn’t acceptable to these parents.
The Rubella Association, as it then was, had two projects on the go – a new group home in Market Deeping, and the Family Centre in Ealing. But it was still a small-scale family organisation. My job, which I must confess was rather daunting at first, was to set up a professionally-run organisation, with a proper strategy, management structure and fundraising activities.
“It was still a small-scale family organisation”
There was a lot to learn, but with the support of some brilliant colleagues, like Paul Ennals and Dave Harker, we were able to put down strong foundations and then to grow rapidly – especially in the late eighties and nineties. The government had decided to close down the long-stay hospitals, which were really dreadful, and we were able to set up new homes for people to move into.
It’s hard to believe but we now reach 13,000 individuals and families each year in our housing, college and community services, our programmes in arts, sports well-being, and our information and advice and campaigning functions.
Our work has also spread out across the country and indeed the world. Sense Scotland launched in 1985 (and has since become independent), Sense Northern Ireland in 1990, and Sense Cymru in 1993. And thanks to your work Rod, Sense International began its work in 1993 and now helps to develop services for deafblind people in Bangladesh, India, Kenya, Nepal, Peru, Romania, Tanzania and Uganda.
There have also been a lot of exciting new developments in recent years. Ever since Sense first started, one of the most important things has been to help the individuals we support – who have some of the most challenging disabilities – to communicate and have a voice. I’m really proud that children and adults are being offered all sorts of new ways to express themselves including through our Arts, Sports and Wellbeing activities.
“I’m proud that children and adults are being offered new ways to express themselves”
Another thing I am acutely aware of – and this has always been the case – is that people with complex disabilities, and their families, can become terribly isolated if the don’t get the right support. We have run holidays for over 45 years, and more recently, we have expanded our short break provision. We have also developed our Buddying Schemes and Get Out There (GOT) groups for young people to tackle loneliness. And we have also established our innovative TouchBase Pears centre in Birmingham which is offering a radical new approach to bringing disabled and non-disabled people together, with a thriving programme of activities and events for the whole community.
There is still so much going on, but of course there are still a lot of challenges out there. What were the things you found most testing, Rod?
I think that the financial challenges were the most stressful for me to cope with. After we opened our first group home in Market Deeping in 1980, things were very tight financially for a number of years – which meant that we weren’t able to offer new supported accommodation until 1986, when we opened a number of flats in the old School for the Deaf in Edgbaston, Birmingham. This had been very disappointing for the families, who had been waiting so patiently for a home for their loved one.
“I think that the financial challenges were the most stressful to cope with”
It can be lonely being a Chief Executive, especially when you have to make decisions that you know will make people unhappy. So I was very happy – and also relieved – when their sons and daughters were able to move in. That’s a great memory for me.
How about you, what are the things you find most challenging, Richard?
Like all charities, we have had to take some tough choices and steer through financial difficulties. Sometimes, it can feel like we are constantly battling with additional pressures, additional costs and an uncertain financial environment. That is the environment that all charities operate in and will continue to do so, regardless of Covid-19.
Of course, this impacts on the daily experiences of families and disabled children and adults. 70 per cent of families of disabled children don’t receive any support outside the family home, half of local authorities are cutting short breaks, increasing numbers of adults don’t receive support for adult social care – and older people with sensory impairments often feel alone and cut off from society.
“The nature of our work that drives me on a deeper emotional level”
At the same time, it is the nature of our work that drives me and engages with me on a deeper emotional level. It’s an organisation whose values reflect my own – my role is to provide clear vision and leadership to run the charity well and efficiently, but we can still ensure we understand each person’s perspective, bring passion to your work, and be motivated by empathy and compassion.
Yes, I would agree with that. My time at Sense was the most important and rewarding time in my working life. It brought me into contact with so many truly wonderful people – far too many to mention.
The nature of our work means that our staff and volunteers develop close and intimate connections with the individuals we support. I have learnt a lot about myself through the work we provide, and I continue to do so every day.