Disabled people are innovators: we must support their financial resilience
2021 Fellow Charli Skinner explores why financial resilience is important for us all, despite our current circumstances.
Charli Skinner is a 2021 Year Here Fellow focusing on health innovation. She is setting up a social business to give agency to chronically ill and disabled people and empower financial resilience. Charli also works in patient advocacy and engagement, is an access-centred fitness coach and is chronically ill and disabled.
In this piece, Charli talks about how she’s making the link between her lived experience and social business, plus why we all need to do more to build financial inclusion for disabled communities.
£583: the average additional cost of being disabled per month.
For the 1 in 5 of us that live with disability, the price tag is high. Inequities experienced by people with disabilities are countless and can happen to anyone at any time. Of this 1 in 5 disabled people in the UK, over 80% have acquired their disability during their lifetime.
A shift
For a large number of people, who are not typically made vulnerable in the world, COVID-19 made it clear to all that rapid changes in health circumstances can completely change life’s trajectory, opening a window into what it is like to be disabled or chronically ill. We’ve seen it with people forced to take sick leave, loss of jobs, access to and shortages of essential goods and services, and so much more. And while for many ‘health is wealth’, there is a paradox: wealth is also health. We know that people living in poorer areas not only live shorter lives (on average 17 years less), but also spend more of their lives with disabling chronic health conditions. Money impacts every area of our lives, so naturally having no financial stress impacts access to healthcare & health outcomes, relationships, education, career, relationships. We have to talk about it.
So, what is the true cost of chronic ill health and disability?
Increased costs and loss of opportunities can be experienced through a multitude of factors. Importantly, disabled and chronically ill people who also live with multiple intersections that are underserved, including gender, sexuality and race, are most likely to be hit the hardest by greater inequity as well as the poverty premium (the extra cost that households on low incomes incur when purchasing the same essential goods and services as households on higher incomes).
Cost of access to treatments that aren’t provided by the health system, while being core to condition management(or as interim solutions for ever lengthening waiting times for treatment) are high, with more complex conditions requiring personalised, unique management plans — the time and costs to manage these, travel to appointments, arrange treatments can equate to a part-time job in itself.
In terms of employment, loss of earnings is perhaps most significant; disabled people are almost twice as likely to be unemployed as non-disabled people. For those that do work, on average a disabled worker will earn £3,822 per year less than a non-disabled worker. Where a disabled or chronically ill person may work, they may have reduced hours and therefore receive pension contributions on a decreased pro-rata basis — and so, the cycle continues.
It also costs more to buy insurance with underlying health conditions, more to access healthy food with the healthy food premium, and more costs are often needed to be set aside for accessible transport (not only for physical, but also cognitive, or energy affected conditions) and other access-needs that are not facilitated or built into the fabric of our society.
At a system level, decades of austerity and recent cuts to universal credit mean that more than 800,000 people are estimated to be at risk of being plunged into poverty, disabled and chronically ill people being at the centre of this. For those requiring care, policy changes and lack of equitable solutions have meant some adults with learning disabilities are paying thousands of pounds extra a year for their care.
The hidden cost of disability that is not so tangibly obvious, but translates to significant losses cannot be ignored; the loss of time and energy to dedicate not only to earnings, but to the things we love — it all counts.
So since life-changing shocks are inevitable, how can we do more to work with people experiencing them?
Harness opportunities, use equitable, justice-based approaches
What can we do to improve financial resilience?
a) Provide support, tools and meaningful interventions for financial resilience
When people become chronically ill and disabled and are not given access to the tools needed to empower them to be as independent as possible, a cyclical pattern of worsening outcomes can happen. Often people are forced to turn to mutual aid or collective care initiatives, radical practices used by disabled communities for years, now mainstreamed in the context of the pandemic. To avoid issues of unemployment, housing problems, debt, access to food and resources and more, intervention at the right time, with the right tools is needed: Pocket Power is a social enterprise that helps people switch to cheaper deals and apply for discounts for their household bills. Evenbreak provides resources and links to services that work with people on financial resilience. Touco is built to help people with long term mental health conditions better manage their money.
b) Pay, hire and work with disabled and chronically ill people, publish your disability pay gap… and DO something about it
For disabled or chronically ill people who are able to work, lack of equitable accessible opportunities create barriers to inclusion.
We mustn’t forget that disabled people are hugely innovative. They have had to push through in a system that isn’t built for them to really survive, those kinds of minds, brains and experiences show immense potential and value in entrepreneurial work places. On top of this, the total spending power of families with at least 1 disabled person is estimated at £274 billion a year, by investing in disabled people, the economy only prospers.
In addition; need for flexibility in the work place should not compromise economic security; pay gap reporting for disabilities, as well as all other intersections should be mandatory, as well as policies put in place that actually work to eradicate them.
c) Even better, move past neo-liberal inclusionism to justice-based, system change approaches
The social model of disability says that people are disabled by barriers in society, not by their impairment or difference. It understands that ableism lies at the root of so many societal issues and justice-based approaches are necessary for change. Disability justice moves beyond rights-and-equality-based approaches, beyond access and inclusion in unjust systems, instead working towards collective justice and liberations, towards transforming society as a whole.’ System change should be at the centre of this.
Disabled people are the definition of hustlers, real-life-daily innovators.
They are people with a wealth of ideas, potential, and creativity that should be empowered and harnessed. Government structures and healthcare systems must offer mechanisms of support; organisations must employ, work with and empower disabled people; and insurance, healthcare, carers and everyday fundamental resources should not come with extortionate price tags. Access, as a universal issue, should be at the centre of all of this. Where support is provided to populations most underserved, the cycle of benefit only amplifies for everyone.
Financial resilience is important for us all, despite our current circumstances.
Charli Skinner is a ‘Life Shocks Fellow’, supported by our partnership with Royal London. As part of Royal London’s Changemakers programme, the partnership with Year Here explores the causes of financial vulnerability, the challenges of building economic resilience, and how we can better build resilience to life shocks. This involves developing ventures that bring innovation to issues including support for carers, increasing opportunities for young adults with disabilities and solutions for companies to support and identify their vulnerable customers.
Apply for the 2022 Social Innovation Fellowship by January 4th 2022.
