The challenges of setting up a charity for disabled children by Jane Holmes

Written by Guest Writer

July 3, 2020

In 2007, when we, a group of mothers of disabled children from Wokingham, Berkshire, announced to our community that we wanted to open a community centre for our children and others like them, it was perhaps surprising that anyone believed us. I think it was our relentless and sustained enthusiasm that convinced people to support our idea. We really believed in our fragile dream and we pursued it like a pack of blood-hounds.

After seven years of fundraising, profile-building and networking, alongside caring for our own children, ‘Our House’ was opened in 2014 by the Earl and Countess of Wessex. Since then, the charity has gone from strength to strength, with over five hundred families now coming through the door over the course of a year, accessing numerous activities from physiotherapy to play-group.

To ensure that our services remain the best they can be, we engage fully with the families who visit our centre and keep conversation live. It’s easy to guess what people might like to see, but the best way to make certain is to simply ask them. We carry out regular consultation exercises with parents and have throughout the charity’s life, but it’s the children who remain our biggest and therefore most valued critics. We actively encourage feedback and as far as we can, we act on it. Learning to value criticism is an important lesson for anyone, but when running an organisation offering a service, it’s crucial. It is time-consuming and often the conversation turns into parent-to-parent support, or a rant about services not being met, but it’s always worth it. After all, the charity does not belong to us, it belongs to the people who use it.

Unlike businesses, charities do not seek to make a profit. This mindset can be difficult for people joining us from a business background to grasp, but it’s important that they do. Keeping reserves up to a certain level is important of course, but funding opportunities can sometimes be very realistically turned down if they are surplus to requirements.

We have found building relationships with other charities working with disabled children to be invaluable. With both mutual support and the use of our centre, we like to be as generous as we possibly can. Along with another local disabled children’s charity, a couple of years ago we set up a Forum for the Chief Executives of all the disabled children’s charities in Wokingham. This not only ensures that we work in partnership but enables us to support each other’s organisations and offer help if necessary. We are also able to make sure that our services are efficient and streamlined, avoiding duplication with other organisations.

People often think running a charity is all hearts and flowers. It isn’t. A well-run charity is a business just like any other and encounters all the same sort of challenges. Egos clash, employee issues arise, people come and go, but we have managed to keep a long-standing and committed number of staff and volunteers who have been with the charity for years. This consistency has created some wonderful working relationships which have served to strengthen the charity and to maintain loyalty between those who work there and the devotion to the work we do.

Without having big ideas, Building for the Future would quite simply not exist and our charity has always been fast-paced, progressive and ambitious. People are often surprised at the scale of our aspirations, but we have proved that unwavering dedication to our aim pays off. Our plan for the next five years is to open new premises. This space will provide enough room for our current provision but will also include a learning centre for young adults with disabilities. The aim is to also employ disabled adults to help run the centre. It is our belief that everyone has a contribution to make to society with a good level of appropriate support and the right plans in place.

Currently, in our area, many disabled school-leavers find that there is very little for them to do. Others do access a college provision, but there are often long waiting lists or they necessarily need to attend a college some miles away, which proves very costly. We have spoken to parents who have had to stop work when their children leave school in order to provide the twenty-four-hour care that their children need. There is strong evidence to suggest that opening this new centre will not only give a greater purpose to more disabled young adults but will create efficiency and save money for our Local Authority.

With regard to finances, our model is particularly efficient. We only have two part-time paid members of staff, the rest being volunteers. Many of those working for the charity remain parents of disabled children and the charity is very much parent-led. As Our House is fully accessible, we are one of the only places in our area which is appropriate for certain disabled children to spend any length of time. Therefore it is in demand and we charge a nominal rent to fellow groups working with disabled children as well as hiring the centre out for private parties. This provides us with a good proportion of our necessary income. The rest comes from fundraising initiatives and it is through many of these that we have found opportunities to raise the profile of the charity, such as through our annual Awards Ceremony which recognises wonderful people working with disabled children.

One of the best things about running our charity is that it is such fun. That, alongside the knowledge that we are helping some amazing children, makes all the hard work worthwhile.

If I had to think of one word that sums up running a successful charity, I would say opportunity. Opportunity is everywhere; the trick is to spot it and take advantage of it. That, I believe, is what sets a great charity apart from a good one. Our charity, ‘Building for the Future’, is a good example of this.


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