Then There Was Silence

The pandemic has had a devastating impact on disabled children and their families.  It has left them isolated and abandoned.  Vital support has been reduced or stopped altogether.  Disabled children have seen their conditions worsen.  And this has all damaged the emotional health and well-being of all members of the family, including disabled children’s siblings.

Our research throughout the pandemic has highlighted this impact.  Our new report (published 10 September 2021) – Then There Was Silence – brings this research together alongside new analysis and an evaluation of how the voluntary sector responded to the meet the needs of children and families.  It draws on the experiences of countless families, through surveys and interviews, as well as information obtained through Freedom of Information requests and other research.

Key findings in the report are that –

  • Children and families have been isolated and abandoned; and not been listened to.
  • Covid restrictions meant services were stopped or reduced; and many are still slow to return.
  • Mental health and wellbeing of all the family has deteriorated.
  • Children’s conditions have worsened and needs become more complex; delays in assessments mean needs haven’t been identified.
  • The charity sector demonstrates agility and flexibility and was able to extend its reach to help support families.

As a result of our findings, we have identified five vital steps for central government, local government and the NHS.

  1. Prioritise the needs of disabled children and their families within covid recovery plans and programmes.
  2. Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
  3. Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
  4. Take a whole family approach to assessments and support, including siblings. This should include the provision of respite/short breaks and opportunities for families to take part in activities to overcome the isolation felt by so many.
  5. Invest in disabled children’s health and care services through the Comprehensive Spending Review.

One beacon of light in the report is how the voluntary sector responded and adapted to meet the needs of disabled children and their families.  As well as making recommendations for government and the NHS, the report identifies key characteristics of successful approaches by charities, and sets out recommended steps for charities, for funders and for the Disabled Children’s Partnership.

The mammoth task of leading our research and writing the report was undertaken by the DCP’s Research and Evaluation Manager, Dr Cath Lunt.  The research and evaluation has relied on the support of the whole DCP membership and other partners.  But most of all, this report would not have been possible without the support of numerous young people and parent carers who gave their time and shared their experiences.  A massive thank you to them from everyone at the DCP.

You can read the full report here.

We have also produced a short briefing document on the findings, and one aimed particularly at charities and funders.