Q&A with Contact: A charity for families with disabled children

This is a question and answer piece with the charity Contact. It is the last in a series of case study interviews which further explore the impact of the coronavirus crisis on individual charities. Contact is a charity that works to help families with a disabled child feel valued, supported, confident and informed.

We asked Contact some questions about funding, their users, and their experience of continuing to serve their beneficiaries throughout the Covid-19 pandemic. Their responses were as follows.

How are your service users affected by Covid-19?

‘For many families with disabled children, lockdown is not an entirely new concept. They are all too familiar with being isolated, struggling financially, delivering home schooling where the right school-based support is unavailable, and being told that they cannot use public transport or the playground as it is not accessible.

Covid-19 has given us all an insight into how hard, how isolating, and how frightening lockdown can be. How angry it can make us feel when we are denied our rights and freedoms.

For our families, the pandemic amplified daily challenges and widened inequalities. Vital support was stopped, physical and mental health has worsened for children and parents, and disabled children’s learning, progress and communication have all taken a hit. In a report by the Disabled Children’s Partnership, a coalition of over 80 charities, one in five families report heading into debt.’

What innovations have you developed in response?

‘We mobilised an emergency response, providing food, supermarket vouchers, and tablet computers for home schooling. Through our ‘Fledglings shop’, we have provided a range of products and equipment to low-income families, including sensory equipment that children would have had access to in school; aids (such as chews or stress toys) to help with anxiety and challenging behaviour (the top concern from families); and practical items to help with, for example, feeding and incontinence.

Our free helpline continued and traffic to our online advice pages increased by 44% during the first month of lockdown. Maintaining and increasing support without a break in service was a real success given that the whole team suddenly had to work from home, which we had never done before. The length and emotional intensity of the calls to our helpline greatly increased too. We needed a new service to meet their emotional as well as practical needs, and so, with the support of the True Colours Trust, we launched a ‘Listening Ear’ telephone appointment service which does exactly that. As well as expert advice and information, this service provides a safe space for parents to rant, to cry and to be reassured.

And of course, we shifted our face to face support to virtual support—including workshops and webinars, plus yoga classes and coffee mornings. Our strategies to help manage challenges related to sleep, behaviour and stress have reached over 2,000 families.’

What impact is coronavirus having internally for your organisation?

‘Just before the first lockdown, we launched our new strategy with digital transformation at its heart. The pandemic sped up the pace of change, as we transferred to online delivery and staff learnt through doing and sharing skills. Our teams have done an amazing job to ensure that families can still get the support they need.

No doubt, we will return to some face to face delivery when we can, but we will also keep the learning from digital delivery too and ensure it remains a part of the mix.

Financially, the pandemic has been a challenge, but my senior team and trustees all felt it important that we come out of the pandemic knowing we did everything we could for families when they needed us most. I am proud that, despite the significant challenges that we have faced as an organisation, we have been able to expand our services at this crucial time.’

Given the second lockdown, and the longevity of the crisis, what impact do you predict the crisis will continue to have on your charity in 2021?

‘We anticipate increased demand for our services. Families are exhausted and the financial strain is growing. Families with disabled children have to balance caring responsibilities with work, and the additional costs associated with disability; so they are already more likely to be low income households. Redundancies and financial pressures will push many into poverty. It is clear that recovery for families with disabled children will be a long road, and emotional and practical needs will not immediately go away, they will change and we will need to adapt our support.

In addition, the pandemic highlighted fissures in the system and there are now extensive delays for health, social care and education assessments and services. We will work with sector partners to ensure the government does not overlook families with disabled children. Campaigning is an important part of our work, which is why I founded the Disabled Children’s Partnership, to raise the profile of the challenges disabled children face with the government.

We also anticipate that financial pressures will intensify for us, as an organisation, next year.’

How can philanthropists help? Both now and in the long term?

‘The pandemic has shown philanthropy at its best. Funders have enabled us to continue with existing services, pilot new approaches and underpin our work with unrestricted funding. We are eternally grateful for their partnership and commitment to families with disabled children. Looking ahead, we will continue to need philanthropists’ support to reach families who are desperate for help and to flex in response to changing needs.

As our former Chair at Contact used to point out—in times past, the state’s role was to provide the cake and philanthropy was for the icing; and now, with austerity, philanthropists are increasingly called upon to fund the cake itself. Organisations like ours are well placed to respond as we are closer to families, understand their needs and can be more agile in our response. However, we need to maintain pressure on the government to make a more equitable cake. It is vital for philanthropists to support campaigning and social change initiatives, in addition to direct delivery. Genuine social change requires both.’

What has coronavirus revealed about the state of the sector?

‘The disability sector has responded well, and we are working through the Pears Foundation Learning Hub at the Disabled Children’s Partnership to identify good practice, what has worked in terms of covid-response, and where the gaps are going forward. Already, we see that partnership working has been incredibly important, in both campaigning and service delivery. The disability sector is richer for the real range of charities that make it up. It is vital that larger charities reach out to support the work of the smaller, voluntary, often parent led groups. Many of these, such as groups for children with rare conditions, have been hit by the drop off in community fundraising, in a way that is not so visible but has a real impact on grassroots support for children particularly hard hit by covid (those shielding, and those whose lives are limited and need to live their years to the full). It’s important for covid-response funds to get to all parts of the sector, which is why I’m so pleased to be working with the Pears Foundation and the Department for Digital, Culture, Media and Sport, to get small grants out to these support groups. As leaders, we need more than ever to challenge ourselves, to think carefully about how each pound can be spent to make the biggest difference—and that includes thinking hard about who is best placed to spend it at this time.’

Interview with Amanda Batten, Chief Executive, Contact

Click the link to return to our How are charities adapting to Covid-19? page. For more from NPC on how to respond to the coronavirus crisis, read our guidance here.