When the UK went into its first lockdown towards the end of March 2020, we all found ourselves grappling to understand what was happening and wondering how it would affect us.

Parents and carers raising disabled or seriously ill children were faced with immediate and increased pressures. Suddenly, they had to cope with dramatically reduced access to their children’s specialist services and in many cases, caring for children with complex needs without a break.   

While some disabled children were allowed to continue at their school or nursery settings, others were not. And for some parents, the risks posed by Coronavirus meant they had to shield with their children regardless.

For those families on lower incomes, the immediate or impending fall in incomes faced by tens of thousands of working parents posed a further significant risk. This was compounded for parents of disabled children who could not risk continuing in roles that exposed them to Coronavirus, because of the impact this would have on their children.

In those first few days, it became quickly apparent to us at Family Fund that the families we support were facing unprecedented pressures on several fronts.

Having just completed our annual report for 2020/21 (which will be published shortly), I have been remembering those early days while reflecting on our work over the last 18 months – as well as what challenges the future holds. 

Needed more than ever

Within a few weeks of lockdown, we began to receive many more applications from families within a few weeks of lockdown, particularly for items to help children and young people now required to stay at home, such as digital devices for home learning, and recreation and outdoor play equipment.

We quickly prepared a case for extra financial support for our government funders, encompassing the lived experience of families that brought to life the pressures families were already coping with, alongside our existing research data , and outlining the scenario we could expect families to face. In response, we received emergency funding from all four UK governments, totalling over £15 million in addition to previously agreed funding, which would prove vital over the following months.

This extra funding meant that, despite the challenges of the last year, Family Fund was able to provide 110,537 grants to families raising disabled or seriously ill children, an increase of over 32,000 (42%) compared to 2019/20. This reflects the reality of a year where families needed support more than ever.

Adapting our services

Like every other organisation trying to keep services going during the pandemic, we found ourselves having to change to accommodate remote working ourselves, and consider the society-wide changes and how they affected our families.

Within a couple of weeks, we had supported the majority of our staff to work from home, with a small number of staff working on essential activities in the office in a safe environment – ensuring families who could not apply online could still submit a paper application, and that calls to our helpline could continue to be answered.

We worked closely with our suppliers who provide families’ grant items on our behalf, to ensure that changing trends in requests for support were understood quickly to minimise any disruptions to that supply. For example, many families needed support to create opportunities to keep their children active and entertained, such as outdoor play equipment or toys. Many families found these types of grants helped ease the stress and pressures at home by providing a much-needed outlet for play, with many children not just having to stay at home during lockdowns, but also needing to shield owing to being at greater risk should they contract Covid-19.

We enabled more families to receive support at the height of the pandemic, and improved our online application systems. Our First Contact Team continued to respond to families calls, emails and messages, answering questions not just on families’ applications, but also providing helpful information and signposting to other sources of support. Realising we could reach thousands of families via our website and social media, we made sure we were sharing the latest information on changes in policy and what support was available from government and other charities, setting up specific sections on the website with all the key information clearly presented, and providing more information and signposting over the phone. In total, we were able to provide a total of 38,601 services, including information and signposting, guidance on tax credits, and digital skills training.

With no face-to-face events, we began running webinars for families and sector professionals to answer questions and signpost to additional support, as well as expanding the content within our email newsletters.

To keep providing help to families, we needed to make sure our staff were supported during what was a period of significant challenge for so many of us. Throughout the year, we increased our communication, provided greater flexibility to support staff working at home and in the office, especially at times of home schooling. We conducted staff surveys to maintain an understanding of how our team was feeling, how remote working was going and any emerging issues. We worked with colleagues to introduce new policies to support health and wellbeing and placed paramount importance on the safety of our staff, ensuring that robust processes were in place to make our premises Covid-secure and to make sure that staff working at home were supported, comfortable and able to work efficiently.

Securing the future

The pandemic created an immensely challenging environment for fundraising. With fundraising events halted, and all charities seeking to secure individual donations, we had to work hard to highlight the issues families were facing and why our work needed people’s support. We trialled new forms of ‘virtual’ events during the year and secured a Radio 4 appeal presented by broadcaster Jo Whiley, whose sister Frances has a learning disability. The appeal raised £65,802 – making it one of the most successful appeals Radio 4 have had.

In the middle of a year of upheaval, we were pleased at the commitment to the future demonstrated by our fantastic new partnership with McCain Foods, who have pledged £1 million over the next three years to support our work. This has allowed us to develop a grant programme that will help hundreds of families each year with items such as cookers, fridges, and other items that support families to spend time together, especially at meal times.

This partnership has also provided an opportunity to raise awareness of Family Fund on a national stage in a way we have never had before, with McCain launching a new national TV advert at the beginning of April to promote the partnership to millions. Six families took part in the TV advert, alongside many more involved in other elements of the campaign, such as animations and social media takeovers. The advert gave a national window into the lives of families who are under-represented in our daily media and we were pleased that so many families told us they saw their own lives reflected on screen.

This campaign took shape over many months, and we are grateful to the efforts of our team involved but specifically our Communication and Fundraising staff, McCain, the media and production agencies, and, of course to all the families who have been so generous in sharing their lives with us and the wider world by taking part in the campaign

The impact of Coronavirus on families – and the future

The impact of the pandemic has been devastating for many families. There has been a severe, disproportionate and lasting negative impact on the vast majority of those that we support.

We conducted five sets of research throughout the year, taking in the views and responses of over 13,000 families on low-incomes raising over 17,000 disabled children and young people across the UK. The most recent report, published one year on from the first lockdown in March, highlighted the stark reality that:

  • 96% of families reported that the health and wellbeing of their seriously ill and disabled children had been negatively affected by Coronavirus restrictions
  • Disabled children’s behaviour and emotions (91%) and mental health (87%) were most negatively impacted, with figures increasing by 27% for both figures from March 2020
  • Two thirds (67%) say support from healthcare services has declined, with more than two in five families (44%) reporting a significant decrease
  • Three quarters of families (76%) report their overall financial situation is worse as a result of coronavirus, with 20% saying income had “significantly decreased” and 7 in 10 saying they had no savings to fall back on.
  • Two in five families (42%) believe it will take more than a year before their lives return to normal

Over the last year we have shared these findings widely, with government and elected representatives to influence policy, with sector partners and professionals to inform their work and practice, and on national and regional media to raise wider awareness of the issues facing families raising disabled or seriously ill children. This work will continue, to help us understand the issues and pressures that families face now and in the future as we recover and indeed live with Coronavirus.

I am very proud of the team at Family Fund who have lived our values, showing support, passion and determination every day to ensure we delivered our purpose, supporting tens of thousands of families during the pandemic. There is much more for us all to do as families face a fraught future. After over a year of reduced income, limited access to services, and support for their children we do not fully know what the lasting impact of the pandemic will be on the families we support in terms of their finances or mental health and wellbeing.

As we work harder than ever to help families rebuild their lives, organisations like ours will need more support than ever to be able to help disabled or seriously ill children access the opportunities that they need and deserve. Each week we are receiving more applications than we were pre-pandemic, evidence that the need for our support remains high and the impact on many families’ finances will be longer-lasting.

We are committed to continuing to highlight the issues and share the experiences of families as widely as possible, to ensure their needs are considered as we recover from the pandemic. Families raising disabled children were already facing too many struggles before the pandemic. As we take stock, we must take the opportunity to build a better future, where families can enjoy the quality of life that should be their right.

Cheryl Ward is Chief Executive of Family Fund

Read our research into the last year of the pandemic: 'The Impact of Coronavirus'

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