Written evidence submitted by Embracing Complexity



Impact of COVID-19 on DCMS sectors


About Embracing Complexity


Embracing Complexity is a coalition of 53 organisations working together to co-ordinate campaigning and research for people with neurodevelopmental conditions (NDCs). The coalition is led by Autistica, the UK’s autism research charity. Our first two reports, published in May and October 2019, are available at www.embracingcomplexity.org.uk. We estimate that around 1 in 10 people have a neurodevelopmental condition,[i],[ii] including but not limited to autism, learning disability, dyslexia, dyspraxia, ADHD, Tourette syndrome, and research shows that this group already experience significant health inequalities. Our members range from service providers to research funders and from large well-known organisations to small volunteer-led charities – some of whom are fighting for survival as a result of the COVID-19 pandemic.


Immediate impact of COVID-19 on the sector


“We are facing the perfect storm of increased demand and reduced income [iii]


In a survey of our member organisations conducted in April 2020, around 4 in 10 respondents told us they had a negative view of their organisation’s financial position over the next year. The COVID-19 pandemic has led to the cancellation of fundraising events, the closure of shops, a reduction in donations as individuals and corporations face their own financial difficulties and the need to support delayed research projects for longer, all of which has resulted in a catastrophic impact on charity income. In turn, charities face a sharp increase in competition for other funding sources, such as trusts and foundations. As a result, over half of respondents to our survey expect to suspend or reduce support due to financial difficulties – including telephone support to beneficiaries, training and research and 4 in 10 have furloughed staff, while 16% fear being forced to close altogether.


“The people we’re supporting are in survival mode” iii


This comes at a particularly difficult time for many people with NDCs, with over 8 in 10 of our survey respondents anticipating unique challenges for their beneficiaries as a result of the pandemic. People with certain NDCs are particularly vulnerable to infection,[iv],[v],[vi] and some, such as people with Rett syndrome, are considered “clinically extremely vulnerable” and required to shield for 12 weeks. The anxiety, social isolation and uncertainty inherent to this situation can be damaging for people with NDCs who are already more likely to experience poor mental health.[vii],[viii],[ix] Families of those with higher support needs, who are already financially disadvantaged as a result of their caring roles, will be hit especially hard.vi At the same time, many have lost existing support structures due to social distancing measures, school closures and the emergency easements to the Care Act 2014.[x] Many of our members are concerned that because the conditions they represent are not considered “clinically extremely vulnerable”, their beneficiaries are cut off from support; this includes people with Tourette syndrome whose coughing and spitting tics have become a target for and a barrier to accessing necessary services, and autistic people who struggle with the sensory environment of the supermarket and cannot receive their usual online deliveries due to increased demand. Over 6 in 10 of our survey respondents have faced an increase in demand in areas including helpline calls, emotional support, assistance with medication, navigating the benefits system and building online services. Charities are under threat just as they are needed most.


Long-term impact of COVID-19 on the sector


This increased demand on neurodevelopmental charities will continue into the long term; for many people with NDCs and their families, moving into an uncertain “new normal” will be just as difficult as moving into lockdown. The disruption of the COVID-19 pandemic and the subsequent economic downturn is likely to widen the existing inequalities in mental and physical health, education and employment faced by people with NDCs. Many will also face relationship breakdown and increased social isolation. Changes to social care and mental health regulations as a result of the Coronavirus Act 2020 could last up to two years. A strong charity sector is needed more than ever to support people with NDCs through this crisis and beyond; yet at the same time, the lasting effects of the resulting economic downturn means that income for neurodevelopmental charities is likely to remain low.


Government support for the charity sector


“Emergency funding is currently being directed through to local organisations – small national charities like us can’t access funds”


Six weeks ago, the Chancellor announced a £750 million funding pot for frontline charities;[xi] however, details of the grant to the National Lottery Community Fund were only announced this week,[xii] and no guidance for how the direct Government funding will be allocated has been issued. Greater clarity is needed on whether and how charities can apply or, if the funding has already been allocated, how it is being used and the decision process behind this.


Many of our members are national charities supporting people with rare conditions, for whom local charities would not be viable. These charities – and, in turn, the vulnerable people who rely on their services risk falling through the cracks in the Government’s existing charity support offer, which at present focuses on local service providers. The Government should ensure that financial support is made available for small national charities.


Our members also include research charities which would not benefit from the current offer as they do not provide frontline services, but which are still supporting vulnerable people through this crisis and can make valuable contributions to the COVID-19 research effort. The Government should ensure that medical research charities are supported at this crucial time.


The challenges this pandemic has caused for people with NDCs will last into the long term, and our member charities are likely to face increased demand coupled with the effects of an economic downturn in the months and years to come. To date, no long-term support initiatives for charities have been announced. The Government should ensure charities are adequately supported through this pandemic and beyond, so that we can continue to support people with NDCs in future.

[i] Estimate based on Department for Education figures on pupils with special educational needs, January 2019. <bit.ly/2RFIIKf>

[ii] Gillberg C (2010) The ESSENCE in child psychiatry: Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations. Research in Developmental Disabilities 31(6), 1543-1551. <bit.ly/3esiV26>

[iii] Survey of Embracing Complexity member charities, April 2020.

[iv] The Learning Disability Mortality Review (LeDeR) Programme Annual Report 2018. University of Bristol. <bit.ly/2RER6JP>

[v] Yang Q, et al. (2002) Mortality associated with Down’s syndrome in the USA from 1983 to 1997: a population-based study. The Lancet 359(9311), 1019-1025. <bit.ly/2V8e2mW>

[vi] Courtenay K and Perera B (2020). COVID-19 and People with Intellectual Disability: impacts of a pandemic. Ir J Psychol Med 14, 1-21. <bit.ly/2AxuHsr>

[vii] Simonoff E, et al. (2008) Psychiatric Disorders in Children with Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample. J Am Acad Child Adolesc Psychiatry 47(8), 921-929. <bit.ly/2VyZs7a>

[viii] Lever A & Geurts H (2016) Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. J Autism Dev Disord 46, 1916-1930. <bit.ly/3bh8V9U>

[ix] Cooper S, et al. (2007) Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. The British Journal of Psychiatry 190(1), 27-35. <bit.ly/2S588Bd>

[x] Care Act easements: guidance for local authorities. Department of Health and Social Care, 1 April 2020. <bit.ly/3evHz1G>

[xi] Chancellor sets out extra £750 million coronavirus funding for frontline charities. HM Treasury, 8 April 2020. <bit.ly/2WUggpV>

[xii]Statement about the Coronavirus Community Support Fund. National Lottery Community Fund, 20 May 2020. <bit.ly/3bXzvo5>