Mencap chief executive Jon Sparkes was answering questions put to him by colleague Harry Roche. Harry is a Digital Accessibility Officer at Mencap. 


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 over 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.

Clearly, we have a really strong campaigning voice, making 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 that 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 - taking 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 GPs, dentists, A&E or outpatients departments, in my view it can't be right that people with a learning disability are so disadvantaged in the health system.

Employers 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, experiencing mental health issues and all those other pressures that 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, 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 think 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. It drove people apart. 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 on education , missed out financially, missed out on access to services or acquired mental health issues.

We have long waiting lists for the NHS, we have greater exclusion from schools, we have 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. Delivering our services and our social care for people who've been excluded, supporting communities, and campaigning for change.

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

Can you tell me about any experiences you've had of helping to improve the lives of people with a learning disability?

There’s an example from my childhood. As a child, I lived next to a door to a boy called Paul, who had Down Syndrome . I used to do woodwork with him and help him with that. We used to play together. I used to take Paul to swimming lessons. So, I did a lot of things as a child, and as a teenager, in helping my next door neighbour who had a learning disability.

In my professional life, I was chief executive at Scope who had a wide range of services from early years, to schools, to colleges, to social care, which were generally for people who had a physical disability but many of them also had a learning disability as well.

What are your plans to make Mencap as inclusive as it can be for people with a learning disability - both for colleagues and people outside of the organisation?

Again, I'm going to have to learn a lot and listen to the expertise of many colleagues across the organisation.

As an employer, especially one who supports other employers and supports people with a learning disability into employment, we need to make sure that we're an inclusive and diverse organisation, and that we're taking every opportunity we can to ensure that we're not putting up barriers to people with a learning disability who want to work for Mencap.

I have had similar experiences when I was chief executive at Scope where we worked really hard to increase the proportion of disabled people that we employed at all levels in the organisation.

There's a long way to go but we must make sure our recruitment processes are accessible , that our working environment is inclusive and that our processes are inclusive for existing colleagues in helping them develop their own careers.

For people outside of the organisation, we need to be really clear as a principle that when we publicise things, when we campaign and when we fundraise, that these are inclusive. That includes our website and all our communications. Because if we've got really inclusive communication then we're going to be including everyone - people with a learning disability and people without a learning disability.

I am committed to make sure that Mencap shows the way when it comes to being inclusive for people with a learning disability.

What do you think you'll bring from your previous chief executive roles at Scope and UNICEF that will help you at Mencap and achieve its goals?

The thing that's really important to me in life is making sure that the communities, the country, the villages, the towns, the cities we live in are inclusive, vibrant, diverse places, especially for people who are marginalised by society.

I've worked with disabled people, I've worked with people experiencing homelessness and I've worked with children experiencing conflict and humanitarian emergencies. That's not to say all of those groups are the same. They're not, they're all really different, but the thing that runs through my life and my career is supporting people who are marginalised in in some way.

Hopefully, some of the skills I've learned along the way and some of the things I'm interested in, will apply at Mencap. I'm really interested in services and support that enable people to have more choice and control, and more fulfilled lives. I'm really interested in how organisations can work together in communities to make them more inclusive.

I've got some good experience in fundraising and in managing, running and leading large organisations in an inclusive and very ambitious way.

I've got a lot to learn, I'm just starting at Mencap and I'm going to have to learn a lot, but hopefully I'm bringing some really useful experiences as well to join the team.


For further information or to arrange an interview with a Mencap spokesperson , or case study , please contact Mencap’s media team on: or 02076 965414 (including out of hours).        

Notes to editors:  

About Mencap:    

Mencap exists to ensure the UK is the best place in the world for people with a learning disability to live happy and healthy lives. We support people directly and campaign with people with a learning disability, their families and carers. We work to change laws, increase representation and fight for better health, social care and employment opportunities for the 1.5 million people with a learning disability in the UK.

What is a learning disability?      

  • A learning disability is a reduced intellectual ability which affects someone for their whole life. Typically, people with a learning disability need more time to learn and process information. They may need extra support to develop skills, complete tasks and interact with others, or they may have more complex needs requiring round-the clock care. The level of support needed is different for everyone and may change during a person’s lifetime.
  • Learning disability is NOT a mental illness or a learning difficulty. Often, the term ‘learning difficulty’ is wrongly used in place of ‘learning disability’. Having a learning difficulty (such as ADHD or dyslexia ) may mean a person learns at a different pace or in a different way BUT – unlike a learning disability - it does not affect a person’s intellect.  
  • With the right support, most people with a learning disability can lead happy, healthy, independent lives. At Mencap, it’s our mission to remove societal barriers and shatter misconceptions to make this more possible for more people.  

Mencap’s guide to reporting on Learning Disability  

When it comes to creating content with people with a learning disability, we know many people feel nervous about saying and doing the wrong thing. Our guide for journalists, covers everything from up-to-date facts and figures to the right language to use. It also includes tips on how to work with people with a learning disability to gather the best content.