What Sense is calling for

• Government must ensure that disabled people and their needs are included in policies and guidance from the beginning.
• All Government communications must meet people’s information and communication needs, it is essential that new guidance, rules or policies are always also issued in accessible formats.
• Government must establish a greater public awareness campaign about face covering exemptions, and promote consideration and understanding of the challenges restrictions like social distancing create for many disabled people.
• Through our campaign Forgotten Families Sense is calling on Government to support community social care services to reopen and provide working age disabled adults and their families with the vital care they need.
• Government must urgently review the policy which prevents community based social care services, including day services, from accessing regular Covid-19 testing.

An Inclusive Response for Disabled people

At Sense we are concerned that the inequalities disabled people face are being significantly increased during this crisis, and that the rights and protections created for disabled people are being eroded or undermined.

Disabled people and their families have been forgotten by Government during the pandemic; the narrative has been around how vulnerable they are which has left them isolated, left behind and not able to live their lives. Throughout the pandemic charities like Sense have had to ‘retrofit’ disabled people into Government policy as they weren’t initially considered in many of the non-pharmaceutical interventions, like social distancing.

Non Pharmaceutical Interventions

With a second wave upon us and England under lockdown again, it is important that the Government considers how many disabled people will continue to face significant challenges and inequalities in how they access their communities, as well as food, healthcare and support. This includes those who are not at medical risk of the virus but face barriers as a result of social distancing and other Covid-19 secure measures.

Government must more actively consult with disabled people and their families about changes to policy. We need to see tangible recognition of disabled people in the response to and recovery from Covid – in local lockdowns, in funding and resourcing to LAs and in public narrative.

Accessible Information

Covid-19 is a Public Health emergency, so it is important that everyone can access and understand information about non-pharmaceutical interventions. All Government communications must meet people’s information and communication needs and all reasonable steps must be taken. We are pleased that a Government lead has been appointed to oversee the accessibility of communications. However, we remain concerned about the ongoing absence of accessible information especially in light of ever changing restrictions and guidelines. For example, recent shielding information and lockdown guidance were published without accessible formats including Easy Read or British Sign Language.

We are continuing to call for:

–        BSL interpretation for all Government press conferences (and televised subtitles) as standard. 

–        All Government social media assets to be accessible with subtitled videos, alt text on images and statements being in body text not images.

–        All Government communications about new guidance or policies to be immediately available in accessible formats and people who need these receive them.

Without these adjustments, a large community of people will not understand the messages communicated and be at significantly higher risk to themselves and their friends, family and neighbours.

Shielding

Some of the people who we support at Sense are regarded as being ‘clinically extremely vulnerable’ – particularly families with disabled children. Throughout the pandemic information about shielding hasn’t been clear and trust has been low. Many families chose to continue to shield over the summer even though it was not advised.

The current situation with a second lockdown and shielding feels confusing. In particular, there isn’t clear enough guidance around employment rights for parents and advice for other family members. Furthermore, we urgently need to see additional support for individuals and families who continue to face significant risk from the virus. This support includes social care, financial assistance, employment rights and continued support with accessing food and essentials.

Face Coverings

We welcomed the recognition in the guidance around face coverings that some disabled people may not be able to wear a covering due to their disability, health needs or communication needs, including D/deaf lip readers. However, we remain concerned that public awareness of these exemptions remains low. We have several reports from the people we support that they have experienced harassment or been refused service due not wearing a face covering despite explaining a legitimate exemption.

It is vital that Government urgently invests in a greater public awareness campaign to explain the exemptions to the general public as well as businesses. This campaign is also a much needed opportunity to promote greater consideration and understanding of the challenges created by face coverings and social distancing for many disabled people.

Social Care

A recent Sense survey found a third of unpaid carers have had none of the care and support reinstated for themselves or their loved one since lockdown was first eased. It is a source of considerable concern that working age disabled people and the social care services they need have been forgotten by Government. Indeed, the first round of the Infection Control Fund, did not offer support to supported living or community based services, excluding a significant proportion of the care and support that working age disabled adults rely on. It was only after significant campaigning by the disability sector that this changed.

Our Forgotten Families campaign calls on Government to work with families, Local Authorities and providers of social care to immediately outline an alternative action plan for community services. This action plan needs to recognise the additional funding and resources needed to deliver flexible and safe packages of care, as services manage social distancing and other restrictions. Without these measures in place, and with increasing local restrictions, more disabled people will be left without the right support. Over 1000 members of the public have signed Sense’s open letter to Secretary of State for Health and Social Care Matt Hancock asking to meet with him to discuss the impact of Covid-19 on social care services for people with complex disabilities.

Unfortunately, the £1 billion for social care in the Spending Review, the majority of which has to be raised by overstretched Local Authorities, is barely touching the surface of what the sector and disabled people relying on social care need. The Health Foundation estimates £6.1 billion is needed in 2021/22 to stabilise the social care system and lay the foundations for any future reform.

Government has yet again failed to support social care and deliver on their promise to reform and fund a struggling system. It is essential that the future roadmap for social care reform recognises and addresses the care and support needs of disabled people and their families as well as the role of the sector wider than just supporting the NHS with its Covid-19 response.

Delivering Social Care Services

At Sense we deliver social care services in the community for people with complex disabilities and their families, this includes day services and personalised community support. These services are vital during the pandemic, especially for families in crisis. However, delivering these services is becoming increasingly problematic as we cannot access Covid-19 testing for our day services and community support, and we are concerned that disabled people and our staff are being put at increased risk.

The care and support delivered in day services is of the same nature as a residential setting but considerably higher risk due to the regular rotation of individuals coming in and out of the service and mixing with family members. We are strictly following Government guidelines and managing risk as much as possible regarding PPE, social distancing where possible, staff rotas, and infection control, but we cannot do any more. Sense has been able to avert outbreaks of the virus in care homes and residential settings because of the regular testing available, but we are unable to do the same in our community services as they are not eligible for testing. It is having an impact on our ability to deliver our services and keep people safe.

Government urgently needs to review this policy and allow community social care services and day services to access regular testing for staff and individuals being supported.

Key Statistics

• Disabled people made up almost 6 in 10 (59%) of all deaths involving Covid-19
• ONS data shows disabled people reported more frequently than non-disabled people in September 2020 that the coronavirus pandemic is

­        affecting their well-being because it makes their mental health worse (41% for disabled people and 20% for non-disabled people),

­        increasing feelings of social isolation (45% and 32%)

­        increasing time spent alone (40% and 29%),

Sense Forgotten Families Survey

• 62% of family carers with a disabled loved one have taken on additional caring responsibilities during the pandemic
• More than half of respondents (52%) say the health and wellbeing of both disabled adults and their family members have been affected.
• 75% of unpaid carers received no information about support and care being reduced prior to it happening.
•  

Questions

1. Will the Government ensure that disabled people are proactively included in the ongoing response to the pandemic and consulted about changes to guidance or law?
2. Will Government commit to a public awareness campaign about face covering exemptions?
3. Will the Government commit to providing all key information about Covid-19, policies and measures in accessible formats at the time of implementation?
4. Will Government and the Secretary of State for Health and Social Care commit to meeting with Sense to discuss an action plan to ensure disabled adults and their families have the support they need?
5. Will Government urgently review the policy regarding access to regular Covid-19 testing for community based social care services including day services?
6. What specific steps are Government planning in addition to the Adult Social Care Winter Plan to ensure that community based services for working age disabled people are delivered?

About Sense

Sense is a national disability charity that supports people with complex disabilities to be understood, connected and valued. Sense supports children, young people and adults in their home and in the community. Sense campaigns passionately for the rights of the people it serves, and offers practical help and support to families and carers, including information and advice, short breaks and family events.