PRESS RELEASE
Responses to the pandemic have left Deaf and Disabled people feeling that their lives are seen as expendable. That’s just one of the findings from a new report launched today by English Deaf and Disabled People’s Organisations (DDPOs). The report summarises the situation facing Deaf and Disabled people – nearly five years on since the United Nations told the UK government that their cuts had caused a “human catastrophe”. It is essential that the forthcoming UK Covid-19 Inquiry adequately assesses the full impact on Deaf and Disabled people based on an up-to-date understanding of who Deaf and Disabled people are and the range of valuable roles we play in society.
The research team who produced the report heard from hundreds of individuals and organisations with their views about the priority issues for the Committee to consider. Unsurprisingly, COVID-19 was one of the most common issues raised.
What united many of the respondents to the call for evidence from lead organisation Inclusion London, was a feeling that society views the lives of Deaf and Disabled people as worth less than those of non-Disabled people and are happy to sacrifice them for the sake of the economy.
“Being a disabled person feels dangerous on a daily basis. I feel expendable.”
“We are considered by the government to be expendable. Second class citizens. Our lives are expensive to support, so maybe we are collateral damage. If more of us die, it will eliminate that drain on the public purse.”
“Collateral damage and are an afterthought, if at all”
“We are regarded as expendable by the UK Government in relation to Covid, we are always third or fourth thought at best. We are regarded as a financial burden so if we die from Covid it saves the government money.”
Specific issues raised include unlawful use of Do Not Resuscitate orders on Disabled people’s medical notes, the with-holding of life-saving treatment, discharge of COVID patients into care homes at the start of pandemic, lack of access to PPE and legal easements on local authority obligations towards Disabled children and adults.
Respondents also pointed to how the UK Government declined to provide BSL interpretation for televised public briefings by the Prime Minister until forced to do so by the High Court. The legal judgment was handed down with only one public briefing to go, whilst Scottish and Welsh governments provided BSL for their public briefings from the start of the pandemic.
COVID-related deaths for Disabled people are disproportionate – a minimum of 60% of COVID-related deaths between 2 March – 14 July 2020 were of Disabled people. Media reports and public debate have emphasised the role of underlying health conditions within mortality statistics. Official analysis shows that even after accounting for age, health and poverty related factors, Disabled people died disproportionately.
Svetlana Kotova, Director of Campaigns and Justice at Inclusion London, said:
“There has been a marked absence of public and political debate concerning the disproportionate deaths of Deaf and Disabled people which have been written off as linked to underlying health conditions. The pervasive attitude is that our deaths don’t count the same as those of non-Disabled people – that the deaths of so-called fit and healthy people are the real tragedy. The role of out-right disability discrimination in our loss of life has been ignored. It’s seen as common-sense that our lives should be de-prioritised and given less value than others. Our research shows discrimination persists in many areas of our lives and there are no signs that thigs will change in the future. Beyond Covid Disabled people will not benefit from social care reforms and will be hit hard by the cost of living crisis.”
Deaf and Disabled people also suffered disproportionately during lockdowns due to factors such as lack of access to food and medicines, digital exclusion and isolation. Supported living residents with learning difficulties/who are autistic were left in distress as family visits were cancelled with Government guidance unclear. People detained under the Mental Health Act were exempted from the entitlement to daily exercise that the rest of the population enjoyed with anecdotal reports of increases in self-harm on wards as all activities were cancelled.
Deaf and Disabled people were also over-represented in non-COVID-related deaths. Respondents highlighted lack of access to health treatment for pre-existing and new conditions as a likely factor. Reductions and suspensions to social care support provision have also been linked to excess mortalities.
Kamran Malik, CEO of Disability Rights UK said:
“The findings of this report highlight just how important it is that the independent inquiry into the Government’s handling of the pandemic fully investigates the impact on Deaf and Disabled people. We need to know how our needs were factored into key political decisions including when and how to lockdown, what monitoring went on into the impacts of those decisions and what if any emergency planning was in place pre-pandemic.
“Deaf and Disabled people are continuously marginalised within policy making and our contributions to society are rarely acknowledged. We make up 22% of the UK population and 20% of the working age population and we are over-represented among for example unpaid carers and workers in low paid, insecure jobs. We are also valued as family members, friends and neighbours. We are not some disconnected minority that can be shut away while the rest of society carries on. Lessons can only be learned for the future through an inquiry that is based on an accurate understanding of who Deaf and Disabled people are and what our needs are.”
The report, being launched today at a joint meeting of the All Party Parliamentary Groups on Disability and the United Nations, is the product of six months of research and evidence gathering by a project team based at Inclusion London. It will be submitted to the United Nations Disability Committee to inform their next examination of the UK under the UN Convention on the Rights of Disabled People, originally scheduled to begin its first stage in 2022 but delayed due to the pandemic. The report will be available on the Inclusion London website.
ENDS
For more information or to speak to Deaf/Disabled people who shared their personal experiences with the research team contact: Ellen Clifford via email to crdp@inclusionlondon.org.uk or 07505144371
Notes for Editor
- Deaf and Disabled People’s Organisations are organisations fully run and controlled by Deaf and Disabled people ourselves.
- The project steering group includes representatives from the Disability Rights UK, Disabled People Against Cuts, the DPO Forum, and Reclaiming Our Futures Network as well as the Centre for Applied Human Rights at the University of York and Dr Kate Summers from London School of Economics. Inclusion London is the lead organisation.
- Population figures taken from:
https://www.gov.uk/government/statistics/family-resources-survey-financial-year-2019-to-2020/family-resources-survey-financial-year-2019-to-2020#disability-1
https://www.gov.uk/government/statistics/the-employment-of-disabled-people-2021/the-employment-of-disabled-people-2021#populations
- The statement that cuts had caused a “human catastrophe” was made by then Chair of the UN Disability Committee, Theresia Degener, in the closing session of the UK government’s public examination under the United Nations Convention of the Rights of Disabled People that took place in August 2017. See: https://www.disabilitynewsservice.com/uk-faces-un-examination-government-cuts-caused-human-catastrophe/
- The research was informed by 17 consultation events attended by around 200 people, six focus groups targeted at reaching diverse communities, 109 pieces of evidence submitted by individuals and organisations from across England and 351 responses to an accessible survey.
- Quotes from anonymous survey respondents. Many Deaf and Disabled people live in fear of being called up for reassessment of their benefits and having them stopped in retaliation for speaking out.
- COVID-related deaths: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/2marchto14july2020
- There was a 50% rise in deaths among DDP living in the community in receipt of social care support from April 2020 – March 2021. Of the 25,000 deaths, data suggests only 8.7% were COVID-19 related.
https://www.thebureauinvestigates.com/stories/2021-05-10/revealed-thousands-of-pandemic-deaths-in-home-care
- Link to event information: https://www.inclusionlondon.org.uk/uncrdp/appg-uncrdp-shadow-report-launch-being-deaf-and-disabled-in-the-uk-in-2022/
- Access Social Care is Access Social Care (ASC) is a new charity working to provide access to justice for people with social care needs. We act as a central hub for social care advice, providing advice and casework to beneficiaries in social care provision.
Case studies contributed by Access to Social Care:
July 2020 – No longer able to stay in own home due to impact of family isolation – family carer unsupported and struggling to cope
We were contacted about MB’s son, LB. LB lived in supported living but was unable to cope with a lack of visits as well as staff wearing face masks (due to significant medical trauma and intervention as a child). MB had no option but to bring LB back to the family home as he was so distressed being in his supported living accommodation. MB is now receiving direct payments but is nervous about recruiting employees to care for LB in case he can return home and will not be able to take his carers with him. MB has reported significant sleep deprivation and is experiencing significant mental health
issues as a result.
August 2020 – Proposed restraint if attempting to hug family
We were contacted about AR’s daughter, J, prevented from having visitors because she is living in shared accommodation. There had been no individual risk assessment. Additionally, at the time of referral, due to J’s Downs Syndrome the provider was also denying visits on the basis that J should have been shielding. Told that if visits outdoors were allowed, J would need 2:1 care to restrain her as she would attempt to hug AR and they would not allow this.
August 2020 – Suggestion from care provider that if family continue to pursue visits, they will apply for deputyship and remove family ability to support in normal way. No previous capacity issues.
Family told that if they keep trying to arrange in person visits to support their daughter in supported living, care provider may apply for deputyship or stop involving the family in her care and support. Family felt that they would be punished if they tried to visit.
August 2020 – Uncertainty over rules – provider raising concerns
Visiting and visitors – query from provider. What to do if people are coming and going from their home – people want to visit family – including overnight. What are the rules? Can we access testing?
August 2020 – Provider raising concerns over lack of mental health support available for tenants experiencing extreme distress due to pandemic related isolation
Provider made contact with us directly as they had heard through a solicitor they approached that we were looking at this issue. He supports a cluster of accommodation 16 rooms in total and has been writing to the local MP, central government and newspapers. Some within his service had not seen family during first lockdown. He reported widespread provider confusion about what is possible for providers to facilitate, and additionally insurance concerns. Tenants suffering due to ongoing separation from family are needing additional psychological support and cannot access this.
September 2020 – Local authority refuses additional support required for an individual experiencing isolation-related distress
LA refusal to uplift 1:1 hours for shared core hours. This is needed because one of the tenants is displaying behaviours that challenge and distress due to the pandemic changes. Other tenants now at risk
November 2020 – Uncertainty over how to manage services when tenants are discharged from hospital whilst still testing positive
A provider contacted us to ask how to manage cases where local hospital are trying to discharge tenants who are COVID-19 positive back into their own homes. Hospitals are doing this before getting a negative result. They can’t see anything in the supported living guidance or regulations that helps them, only discharge to care home provision. They do not have access to testing and they are worried the virus will spread.
