How does Mencap’s new CEO plan to improve the lives of people with a learning disability?

For this year’s Learning Disability Week (17 – 23 June), Mencap’s new chief executive Jon Sparkes answers questions put to him by a colleague with a learning disability, Harry Roche, a Digital Accessibility Officer at Mencap. Jon discusses his vision for Mencap, what he wants to achieve during his time in the role, the challenges people with learning disabilities face and what needs to change.

As Mencap chief executive, what do you want to achieve?

First of all, I would say this country needs to be better for people with a learning disability. Whether we’re talking about health inequalities, employment opportunities or access to social care, people with a learning disability are telling us that they don’t feel seen or heard in society – and this needs to change.

I want to work alongside people with a learning disability to ensure that Mencap is a role model in providing personal support and social care that many people with a learning disability need. I also want communities that are empowering and engaging for people with a learning disability, with access to employment, healthcare, a social life, and choice and control over their own lives; and I want policymakers to take people with a learning disability seriously, to listen to them, and make policies that ensure inclusion and equality.

What do you think Mencap is doing well at the moment?

I’ve only visited services in Cornwall and Wimbledon so far, but I’ve been really impressed by the colleagues I’ve met and how they are working with the people they support to build choice and control in their lives. I’ve also been really impressed by the support we give for people in employment and how we work alongside a huge network of other local organisations.

At Mencap, we have a really strong campaigning voice and we make sure that policymakers hear and see people with a learning disability and make policy decisions accordingly. I think the policymakers have got a long way to go, but I’ve been really impressed by Mencap’s work in this area.

Finally, I’ve been really impressed by the way Mencap listens to, and works alongside, people with a learning disability. The Voices Council – a group of 12 people with a learning disability who share their views and experiences to help Mencap’s Board of Trustees make decisions – is really impressive, as is the way we work with people in our services. We take the time to hear them and understand their choices and how they want to live their lives. That is really important.

What do you think needs to change in the UK to improve the lives of people with a learning disability?

First of all, social care and the social security system need sorting out, so people with a learning disability can live the lives they choose and that those who need support can get the support they need.

The way the health system provides support for people with a learning disability needs to change. Whether it be general practice, dentistry, A&E or outpatient departments, in my view it can’t be right that people with a learning disability are so disadvantaged in the health system.

Employers also need to start embracing the skills and knowledge that people with a learning disability bring and provide inclusive employment opportunities.

Underpinning all of that, I think the biggest thing that needs to change is for people with a learning disability to be seen and heard by society.

What do you think are some of the biggest challenges people with a learning disability and their families are facing right now?

I will need to listen to a lot of people with a learning disability and their families to learn much more about this. But from what I can see, if they can’t get full and fair access to the support services they need, or they can’t get the funding they need through the social security system, then they’re already having to battle for everything. And if you start out battling, it’s very easy to get ignored, marginalised and excluded.

Some of these basic needs like social care, equal health treatment, employment opportunities and funding are putting people with a learning disability at a real disadvantage and making it harder and harder for their families to cope. If you’re finding it hard to cope, other things impact you such as experiencing poverty, mental health issues and all the other pressures those families are under.

Our hope and our aspirations should be so much more then coping. We need people with a learning disability and their families to have the opportunities to prosper and be happy, healthy and fulfilled. This should be a basic right, so I’m looking to learn more about the pressures that people are facing.

The pandemic has changed a lot about the way we are able to work with people directly. What challenges do you think we are still facing after Covid and how do you see things changing moving forwards?

The problems caused by Covid are going to be with us for a long time. They haven’t just suddenly gone away. I think the pandemic caused a massive separation in society and it drove people to the brink.  I think we are really underestimating the impact that it had and how long it’s going take for people to recover. People missed out financially, on education opportunities, and access to services for acquired mental health issues.

We have long waiting lists for the NHS, we have greater exclusion from schools and some industries who people rely on for jobs which have suffered the impacts of Covid and sadly, it’s often the case that the most marginalised people, like people with a learning disability and their families, can suffer the most in that situation. Looking forward, we need to make sure that as we recover, we’re not just recovering for the many, we’re recovering for everybody.

For Mencap, we need to continue to do what we do well and to do it brilliantly. This includes delivering our services and our social care for people who have been excluded, as well as supporting communities and campaigning for change.

Previously, we have seen times when things like inclusion, choice, control, independence and equality were taken much more seriously. Mencap now needs to lead by example and strive for a time when inclusion for people with a learning disability is embedded and permanent, and built into policies, funding and the ethos of the UK. That’s what Mencap’s mission is all about, in my view.