Hidden crisis in social care for working-age disabled adults
May 15, 2020
“There is a hidden crisis in social care for disabled adults risking serious harm for vulnerable people” says Charity Director representing over 70 organisations
– Social care at risk of becoming two-tier system, as working-age disabled adults in care homes are not being prioritised for coronavirus testing
– New CQC data appears to suggest almost twice the usual number of deaths in care homes that serve autistic people and people with a learning disability
– Care and Support Alliance fears that without urgent Government action, more disabled people could be at serious risk during the coronavirus outbreak
The Care and Support Alliance (CSA), an alliance of over 70 charities across the UK, are deeply concerned that disabled adults in social care are being forgotten during the coronavirus outbreak.
There is a hidden crisis in social care for disabled adults, because a number of the measures to tackle the coronavirus leaves many of the people we support out. The alliance is speaking out as it has become clear that despite the Government’s promise in late April to test all care home residents, disabled adults do not have equal access.
The Government has now developed a priority testing programme for older people (over 65s) and people with dementia. The CSA is concerned this is leading to a two-tier system, and is calling for everyone who needs social care, regardless of age, to be prioritised for testing. This means testing people who get support in their own homes, in supported living as well as in care homes – making sure that no one who needs support is left out.
The reality right now is that thousands could be left without crucial tests. Without urgent action, the CSA fears the virus will continue to spread quickly in settings for working-age people and that many more could die. Fears about this are particularly high following the publication of data from the Care Quality Commission yesterday, which indicates a 175% increase in unexpected deaths during the period 10 April – 8 May 2020 in places where people with learning disabilities and/or autism may live against the same period last year.
This underlines the urgent need to make sure everyone in social care can be immediately tested, if they start showing the symptoms of coronavirus.
Jackie O’Sullivan, Co-Chair at the CSA and Director of Communications at Mencap, said:
“It is clear there’s a hidden crisis in social care for disabled adults risking serious harm for vulnerable people. Every day, we hear from hundreds of disabled people and their families who can’t get tested and don’t have the right support to stay safe. And despite the Government effort on testing, this is not getting any better.
“Given the scale of the crisis we know is unfolding, we need to make sure everyone who needs a test gets one. We know this is crucial in stopping infections spiralling and preventing deaths.
“Emerging data from the CQC seems to show there are almost twice the usual number of deaths in care homes that service autistic people and people with a learning disability – a major warning sign. Without the right measures this will only get worse.
“Some of this stems from a fundamental lack of understanding about how the system works: 50% of the social care budget goes to working age adults – it’s not just ‘care homes’. The Government must tackle this now to avoid a catastrophe, and promise to roll out priority testing for all working-age disabled adults, no matter what type of social care support they get. The Government cannot wait any longer.”
Case study: A support worker who works for Mencap describes the challenges they have faced getting the disabled person they support tested.
Following guidance from Public Health England we were directed to our local authority to apply for testing. On applying for testing with them we were informed that testing was for staff or their family members only and not for the people that they supported.
This did not seem to be the correct guidance that was be given by the local authority so we decided to challenge this and go through the Government’s website to see if we could get the person we support tested. The guidance from the Government’s website was that if we got confirmation from NHS 111 that the person we support needed a test then a test would be provided. Confirmation from 111 was given and a test was booked.
The nearest test available was over 30 miles away, despite there being three test sites in the immediate location to the person we support. This posed serious transportation problems in getting to the site without breaking social distancing rules and putting the person we support and staff at more risk. We managed to overcome this by borrowing a vehicle that was configured in a way that allowed both travellers to meet the two-meter social distancing guidelines. This posed a serious risk to the person we support’s mental health and wellbeing. This makes us question if there was not a more suitable option available that was not given to us?
At the test site the person we support was informed that he would have to perform the test without help from his support worker. This made it very difficult for him, but he tried his best to follow the testers guidance and return a sample to them.
When the test results were sent back to the person we support the result was “inconclusive” and it was recommended that he have another test. For the second test we were able to obtain one of the previously unavailable “home tests”, and with support from his support worker he managed to complete the test and send it back. This test has now come back positive and he is again in self-isolation.
At every stage of this pandemic we have had to question the advice being given on the “helplines” and study every page and update on guidance to get the answers we have required.
CSA’s response to the Government’s cross-party talks on social care
March 6, 2020
The co-Chairs of the Care and Support Alliance, Caroline Abrahams, Charity Director at Age UK and Emily Holzhausen, Director of Policy and Public Affairs at Carers UK, said:
“Whilst it is encouraging to see the initiation of a cross-party consensus on social care, it is disappointing that the Government still has not yet offered a solution of its own.
Currently, at least 1.5 million people do not get the care they need, with family carers pushed to the brink to care for relatives with little or no support. Millions of disabled adults, older people and carers are in desperate need of adequate funding to the system.
When he became Prime Minister, Boris Johnson pledged to fix social care and he now has the opportunity to take urgent and decisive action. Whilst the Government is facing many other issues, including Coronavirus, reform to the social care system should not be allowed to slip off the radar and continue to face delay.
A decision on a long-term solution is now crucial. No more time should be wasted in the Government implementing a new plan for social care – now is the time for action to #FixSocialCare.”
Our message to the next Government: #FixSocialCare
November 15, 2019
The 75 members of the Care and Support Alliance are all united that the next Government must #FixSocialCare and give the country the care they need. After 20 years of promises, it’s now time for action.
Currently at least 1.5m people do not get the care they need, some people have to sell their homes to pay for care and family carers are being pushed to the brink caring for relatives with little or no support.
The alliance agrees on key reforms including, care should be free to use (just like the NHS and schools) and should be funded through some form of taxation. After years of political disagreement politicians from both, the left and right agree that some form of risk pooling is needed so people don’t have to bear all the brunt of care costs.
The 75 organisations include Age UK, Alzheimer’s Society, Mencap and The National Autistic Society, all work with people, and their families, that need care. Further reforms the alliance agree on include: disabled adults, older people and carers must all benefit from changes there needs to be an independent national eligibility for care; and people should be able to get care when they first need so to prevent further ill health, whereas currently, people have to be in crisis to get help.
To find out more read our manifesto here
Or here is our easy read version here
CSA’s response to Labour’s plans to introduce free personal care
September 23, 2019
Caroline Abrahams, Co-Chair of the Care and Support Alliance, said:
“So whilst we welcome the Labour Party’s proposals and commitment to invest in care, confining their model only to older people risks creating a two-tier system within which many working age disabled people will find their care needs continue to go unmet. This is unacceptable from the CSA’s point of view since we want any new system to give everyone the care they need, whether they are above or below the age of 65, and to support their Carers too.”
· At least 1.4 million disabled and older people do not get the care they need.
· Care and Support Alliance (CSA) (2018) found that more than a quarter (29%) of disabled 18 – 64-year-olds who rely on council funding have had their care cut over the last year. Also regardless of how their care is funded, – nearly half of respondents to the survey told us that because of a lack of care they have experienced not being able to get out of the house (48%) and not being able to work (46%), or have seen their health deteriorate (49%). In addition, nearly a quarter (24%) told us they are unable to move around their homes safely because of not having the social care they need.
· Working-age adults account for 48% of local authorities’ spend on social care (Personal Social Services: Expenditure and Unit Costs, England – 2015-16 [NS], NHS Digital, October 2016).
· In addition, PSSRU projections of future costs highlights that public expenditure on social services for younger adults is set to rise from around £8.4bn (0.53% of GDP) in 2015 to £18.4bn (0.73%) in 2035 (at 2015 prices) (Personal Social Services Research Unit, Projections of Demand for and Costs of Social Care for Older people and Younger Adults in England, 2015 to 2035, Economics of Health and Social Care Systems Policy Research Unit, 2015)
CSA’s response to the Government’s Spending Review 2019
September 4, 2019
Caroline Abrahams, Charity Director at Age UK and co-Chair of the Care and Support Alliance said:
“Although the devil is often in the detail when it comes to Government spending announcements, on the face of it the extra money announced for social care in 2020/21 should help to keep our current care system tottering along for another year. It should also hopefully mean that local authorities will not have to cut back their care spending this autumn, as many had warned was likely.
“However, the care system is in such bad shape that this new money, welcome as it is, will only buy some time for the next 12 months, it will not be sufficient to address the strategic challenges care faces, including sky high turnover among staff.
“For this we will have to wait for the Government’s care reform plan which the Chancellor promised we would see ‘in due course’ today. For many millions of sick and disabled adults, older people in declining health and family carers, and for our many dedicated paid care workers too, this plan cannot come too soon. How useful this money will be will depend on how long the Government takes to act on implementing a new action plan for social care. We will certainly hold this Government to its pledges.”