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Coronavirus: DR UK CEO writes to Disability and Care Ministers

16 March 2020

The CEO of Disability Rights UK has written to the Rt Hon Justin Tomlinson MP, Minister for Disabled People, Health and Work, and the Rt Hon Helen Whately MP, Minister for Care, to raise concerns about safeguarding disabled people, people with long-term health conditions and older people in relation to COVID-19 (Coronavirus).

Dear Ministers,

We are writing to you to express our concerns that current guidance on Coronavirus does not go far enough to safeguard the lives of disabled people, people with long-term health conditions and older people.

We are requesting the following changes to current policy concerning vulnerable groups who receive care:

Better advice on protecting people in care homes

Care homes are already stretched thin by a pre-Brexit exodus of qualified, skilled workers. They are currently lacking protective, realistic, meaningful advice on how best to realistically protect their vulnerable residents.

The advice issued on Friday 13 February does not take full account of the ease of transmission of this virus within confined communities, relying too much on modelling for influenza.

The government needs to recognise that care homes and residences for vulnerable groups are a fundamentally different environment from other shared spaces because of the vulnerability of those within them, and need to be treated as such. The advice needs to be more stringent, and more robust, and following a contain model, not a flatten-the-curve model. In relation to this, we request the following:

1.   Funding for isolation areas in care homes

We are calling for funds for care homes to implement robust isolation areas for those who catch the virus. Current guidance states that people should be isolated to their rooms.

 2.   Advice to protect people giving and receiving care in the community

Care workers and individuals receiving care have been explicitly told they do not need to use personal protective equipment if they are not demonstrating symptoms. Yet we know this virus can be transmitted undetected. Workers move consistently from house to house, community to community, and care home to care home. We are asking for a change in this guidance to protect both care workers and those they work with.

 3.  Emergency support, where caring arrangements breakdown

Those who act as paid carers and personal assistants, as well as friends and family who aid independent living, have been told to self-isolate if they develop symptoms. But there is no corresponding guidance as to what those who need and expect care can do in such an emergency. We are calling for clear guidance on what to do in such situations, and the funding to back it up for frontline organisations, including Disabled Persons Organisations which may be expected to level up their signposting services.

Due to the fact that social care services are, pre-pandemic, already in crisis, a huge number of disabled and older people and those with long term health conditions are receiving informal support from family and friends and are not known to agencies. This informal support may not be able to continue when the supported person has the virus. National and local government and agencies need to plan support for this wider group of people.

 4.  Training new care workers

It is evident that the number of care workers is insufficient to meet the crisis. A large pool of temporary workers will need to be recruited, checked, trained and deployed.

The other key area affecting disabled people, people with long-term health conditions and the elderly relate to benefits. We are requesting:

 1.  Stopping attendances for benefits

We welcome the move to suspend face-to-face personal benefit assessments for three months. Processes for telephone claims need to be transparent and conversations need to be recorded. It should be noted that people may struggle to get medical evidence to support their claims at this time.

However, we are concerned that this does not go far enough in the current climate. Current predictions and modelling suggest that the danger will not have ceased for the most vulnerable groups come the summer. As such, we are asking for a moratorium on benefit assessments, beyond three months, until vaccines are developed. We are requesting this for all benefits, including PIP assessments.

Insisting that those with long-term health conditions and disabilities come out of self-isolation, isolation which many will already be undertaking, to sit in shared spaces and small face-to-face rooms at great personal risk is unacceptable at this time.

2.  Reducing financial anxiety

People with impairments and illness live with the double sentencing of their conditions and the anxiety those conditions bring. We know from countless personal stories shared with us that the benefits system is a highly stressful part of coping with illness and/or disability. We know that waiting for assessments and benefit decisions is incredibly stressful.

We are seeing, for the first time, a mass understanding of the kind of anxiety disabled people live with day to day as a result, not just of fear of bodily decline, but the fear that the systems which are there to support them may fail them, through accident or design. This is an opportunity to press pause on that anxiety – to test how new, less intrusive systems might work, for universal benefit.

 3.  Getting money to people quickly

Those transferring onto benefits need to receive them within one week.

The current system is too slow to cope with people with serious or terminal illnesses, or those who are unable to work, due to being told to self-isolate, whether or not they have the virus.

We appreciate that claimants can request advance funds, however the current system of requesting advance funds puts undue pressure on both claimants and the system, once the scale of those with viruses increases exponentially. It also causes stress at a time of heightened, health-impacting anxiety.

These changes need to happen for all benefits. The most vulnerable who develop Coronavirus symptoms may realistically not have long to live. The system needs to be much more agile to reflect that.

Self-selective isolation for vulnerable groups

We understand the Government’s approach to flattened-curve herd immunity. But the model does not work for those who are in the vulnerable groups. People in these groups are already self-selecting self-isolation as a means of self-protection. It is a mode of self-protection many already enact in day to day life.

We know from ONS data that there are 1.7 million disabled parents in the UK out of a parental population of 19.1 million. We know that there are around 700,000 disabled children in the UK out of child population of 12 million.

The number of people who would choose to isolate at the moment would not adversely impact wider society by so doing at this stage, but they would be afforded the extra physical protection that self-isolation brings.

In support of this, we request that disabled people and those with close family members with long-term health conditions, be allowed to self-determine whether to withdraw their children from school now, without penalty, in order to self-isolate, until the September school term.

We understand that Government is considering this as a later-term measure for the general population, and one that would have considerable impacts on the workforce and economy. The group we seek concessions for is small, but incredibly vulnerable. By enabling self-selective familial isolation now, there is a better chance that the most vulnerable can avoid contracting this virus.

School teachers produce work plans in advance of their weekly lessons which can be shared with parents so that the work necessary to attain National Curriculum compliance is still maintained.

Finally, we would like to request support for DPOs.

DPO funding for hard to reach groups

Government systems need to work with Disabled People’s Organisations at this time.

We know that there are many people who are not on the radar of care provider networks.

Our grassroots and communication networks are stronger for disseminating information at a time when speed and accuracy matter.

Many of these organisations have either closed down or are on the brink of closure as a result of austerity. With regards to this, we would request funding for such groups in order that they may effectively identify vulnerable people in their respective areas, to help identify those who need support and to link people into support, as well as sharing rapidly developing guidance quickly and effectively.

Most respectfully,

Kamran Mallick

CEO, Disability Rights UK