"During this pandemic our helpline and information service didn’t stop, we continued to be at the end of the phone."

Contact (this link will take you away from our website) is the charity for families with disabled children. We understand that life with a disabled child brings unique challenges. We exist to help families feel valued, supported, confident and informed.

We work in three ways. We support families with information and guidance via our national Freephone helpline, websites and social media platforms, workshops and information stands promoting our parent carer guides on every topic from benefits and finance to health and wellbeing and supporting families through early years to preparing for adult life. We bring families together signposting to and working with local and national support groups. We help families to campaign, volunteer, fundraise and shape local services to improve life for themselves and other families by carrying out surveys and research like our ‘Caring More Than Most’ report (this link will take you away from our website).

At the onset of COVID-19 we wanted to identify how lockdown was affecting families and carried out a survey with them. The ‘Left in Lockdown’ report (this link will take you away from our website) showed the increase in caring for parent carers and for siblings. Many families have seen the little support they received before stop altogether. There was an impact on both mental and physical health for all members of the family. Parents’ main concerns were children’s behaviour and mental health, the impact of children’s friendships, managing home schooling and what will happen if parents contract COVID-19. Parents also felt the financial pressures of reduced incomes and increased costs. They also had concerns going forward, particularly for those who are shielding.

During this pandemic our helpline and information service didn’t stop, we continued to be at the end of the phone or email, helping parents navigate financial and benefits enquiries and sourcing funding for replacing damaged furniture and equipment when all services looked closed. We connected with partners, other charities and professionals to ensure that they knew we were still there for families during this time. We responded to survey responses and worked with funders to develop new services including our small grants for families to purchase toys and sensory equipment for their children on our Fledglings online shop. We set up a dedicated Listening Ear Helpline for parent carers who just needed a parent adviser to listen to them and talk at length. Although we couldn’t do face to face work like sleep and behaviour workshops, we quickly adapted these to webinars and virtual workshops. These are not for everyone, so we continued to update our website information, ensuring clear COVID-19 information was available on our home page, with social media posts, e-bulletins, newsletters and parent guides. We adapted our project delivery for a newly awarded grant from the Scottish Government to develop dedicated information on the new social security benefits and grants for families to provide COVID-19 related information on finances and benefits so families do not miss out.

Some staff were used to working from home and office based colleagues quickly adapted to it. Home workers also felt the challenges of not being able to meet families at events and workshops. Our helpline and the information line in Scotland experienced more complex enquiries, finding that services were not there to signpost parent carers to. Many of our staff are parent carers or have caring responsibilities for their parents so they had to juggle work, caring and home schooling and shielding.

As a charity that supports parent carers, we understand the pressures of working and caring and have policies that support our staff, volunteers and associates including more flexible working hours. We found that parent carers preferred online workshops in the evening, so staff adapted their working day. Staff quickly supported each other on using virtual platforms, using Skype, MS teams, GoToMeeting and Zoom. Working groups were established leading to more collaboration and helping to prevent isolation. We also used these platforms with partners to develop new programmes of webinars for families who have missed out on transition planning into adult life and attending policy group meetings.

The determination in the third sector to ensure we are there for the families we support was increased during lockdown and demonstrated the third sector’s agility and innovation, with much learning being shared within the charity, but also with funders, partners and families. Colleagues across the third sector rose to the challenge, responding to information requests and sharing with each other at policy meetings like the ALLIANCE GIRFEC Advisory Group and Disabled Children’s Advisory Group so that we could not only continue to support families but ensure it was the support they needed at this time.

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