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Why funders must take a new approach to disability

Author: Caroline Collier, CEO, Inclusion Barnet

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Caroline Collier, CEO of Inclusion Barnet, talks about how the Trust's Strengthening Voices, Realising Rights programme is supporting Deaf and Disabled People’s Organisations (DDPOs).

Imagine you’re a woman leading an organisation devoted to women’s rights, working hard to attract funding to promote your cause. Challenging of course, but if you do good work and tell your story in the right way, you will hopefully sustain your organisation and be able to meet at least some of your goals.

Now imagine doing that in a slightly alternative world where the women’s rights organisation you run has to compete for funding with lots of other women’s rights organisations, but with a key difference: almost all your competitors are run largely by men. Imagine that these men-led groups have stronger brands, greater resources, the confidence of funders and the ear of government when it comes to setting out what they believe women want. Imagine that the biggest problem you’re battling is that no one can really conceive of an effective organisation being run by women anyway, because you’re not seen as competent, so everyone’s happy for women’s rights groups to be run by men on their behalf.

As hellish as I trust that sounds, it’s largely analogous to what Deaf and Disabled People’s Organisations (DDPOs) face in the UK today. As mostly local, grassroots organisations, it’s hard to compete against the big disability charities (largely run by non-disabled people), build a brand or gain traction with our messaging. We are mostly under the radar of the public at large. Nonetheless, there are DDPOs up and down the country quietly doing some amazing work, and ready for opportunities to do more.

That’s why programmes like Strengthening Voices, Realising Rights (SVRR) are so valuable, and enthusiastically over-subscribed. By creating a funding stream for DDPOs only, Trust for London has taken a huge step towards levelling the playing field and allowing us to apply to do work we know is desperately needed. This breaks the cycle of non-disabled charities and non-disabled funders co-creating between them what they believe disabled people want.

For Inclusion Barnet, the advice funding wave has allowed us to create a person-centred service that helps people to understand and access their right to benefits support. Mainstream advice services do some incredibly valuable work, but they can sometimes unwittingly put barriers in the way of disabled people who might struggle to attend early appointments or find the requisite paperwork. SVRR allows us to work at the customer’s pace, providing multiple appointments if needed.

The second wave of funding is allowing us to explore disabled people’s experiences of adult social care, with in-depth research that will underpin a push for greater co-production of local services. The opportunity to do this piece of work fulfils an ambition of several years’ standing, since a time when we were obliged to campaign against a local decision where disabled people’s views had not, shall we say, been central to policymaking. I doubt the work would have been possible without SVRR.

Crucially, both these pieces of work are delivered by members of staff with lived experience of disability, so they bring their lived experience to work alongside their not inconsiderable professional knowledge. We pride ourselves on using lived experience at every level of our organisation, from the board to the CEO to the frontline staff. It makes a difference. We strive to deliver services we’d be happy to use ourselves, because we know we might need them one day.

I like to think that emphasis on quality, as well as the clear need for disability organisations to be user led, is why Trust for London and City Bridge Trust which jointly fund SVRR chose to invest in our work. I hope that in a few years from now this becomes the norm. At a time when disabled people’s rights need far more attention from funders, it is only right that disabled people themselves are supported to lead on the solutions.

28 January 2022