Update on petition to stop cuts to disabled people’s care
January 8, 2021
At the end of 2020, the CSA supported a petition hosted on change.org by Jo, mother to Darcie who is autistic. Jo’s petition called on the Government to stop the cuts to disabled people’s care, and instead make sure that people got the care they needed, especially during the pandemic.
A total of 8,148 people signed the petition supporting Jo. In the first lockdown the sudden loss of care had a big impact of Jo’s mental health and on her daughter Darice’s wellbeing. As a volunteer for the Norwich branch of the National Autistic Society Jo could see she was far from alone in struggling to cope without basic care.
Even before the pandemic, 2 in 3 autistic adults didn’t get this crucial basic support, and across England over 1.5 million disabled people, older people and their unpaid carers are living without the care they need. Basic care like help with getting washed, dress and helped with meals. Families are being pushed to break point trying to fill the gaps in the system, which has been made worse by the coronavirus outbreak.
Jo didn’t get the support she needed because her council, like councils up and down the country, just haven’t been given the money by Government to provide these services. This isn’t a luxury, it’s what people’s loved ones need to live a decent life.
Those who signed the petition urge the Government to act as soon to ensure people get the care they need. As the coronavirus pandemic continues, the CSA will be working hard throughout 2021 to keep highlighting why more funding and reform is urgently needed.
CSA launches its ‘Big Social Care Review’
October 26, 2020
Today, the Care and Support Alliance, launched its ‘Big Social Care Review’ to find out about the experiences of those needing care during the pandemic.
Take part in the survey here
An easy-read version can be found here
The survey is open to all those who need care in England and aims to get a picture of what care people have needed since March, what they have received, and what could have made things better. The last time the alliance ran a survey of this kind was in 2018, and nearly 4,000 people took part. They found that because of a lack of care:
• Over a third of people had not been able to leave their house,
• Over a quarter of people had not been able to maintain basics like washing, dressing, or visiting the toilet.
• 1 in 5 people missed meals because of a lack of care.
The alliance is keen to hear from all those that need care, including carers, to get a good picture of people’s experiences. The results will be used as part of the alliance’s campaigning work to ensure the Government fully funds social care and that people get the care they need when they need it.
Joint APPG Meeting and letter published in The Times
July 28, 2020
The CSA held a joint All Party Parliamentary Group (APPG) meeting on 15 July, bringing together Chairs and Co-Chairs of APPGs with an interest in social care.
These Parliamentarians were joined by some of our member organisations who provide the secretariat to these Groups, and discussed some of the issues the social care system has faced during the coronavirus outbreak. They also considered how they can make the case for long-term reform of the system in Parliament and to the Government.
Chaired by Dame Cheryl Gillan, Chair of the APPG on Autism, the meeting was hugely productive and the group agreed to form a loose sounding board and continue meeting as a collective in the future.
The meeting also led to a joint letter being published in The Times on Saturday 25 July, calling for a solution to the social care crisis. This was signed by nine Parliamentarians from across both Houses representing these APPGs. A copy of the letter and its signatories is below:
Sir, As chairmen and women of all-party parliamentary groups (APPGs) concerned with social care, we met last week to consider the future of this vital service given all that we have learnt in the past six months. We are from different political parties and did not agree about everything, but we did identify much common ground. Above all, we agreed that a social-care solution is needed now more than ever to help disabled people and those with health conditions, older people and unpaid family carers too. If we can hold this kind of constructive dialogue we think others can and we look forward to formal cross-party talks to be called soon, which we will do everything we can to support.
Dame Cheryl Gillan, APPG on autism
Mark Harper, APPG on learning disability
Barbara Keeley, APPG on ageing and older people
Baroness Pitkeathley, former chairwoman, APPG on carers
Baroness Gale, APPG on Parkinson’s
Drew Hendry, APPG on terminal illness
Baroness Greengross, APPGs on dementia and adult social care
Debbie Abrahams, APPG on dementia
Simon Hoare, APPG on multiple sclerosis
Dr Lisa Cameron, APPG on disability
Thank you to all of the Parliamentarians who attended and signed this letter, and to our member organisations who supported this event. We look forward to continuing to work with this group in the future to help secure long-term social care reform.
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.
The CSA’s response to the Spring Budget 2020
March 11, 2020
Caroline Abrahams, Charity Director at Age UK and Co-Chair of the Care and Support Alliance, said:
“Given the threat posed by the Coronavirus we understand why the Chancellor decided to prioritise strengthening our national resilience and we are pleased that the NHS and social care are both in the mix for extra emergency funding if required. We also note the very substantial additional infrastructure investment that the Chancellor announced today and the fact that the refinancing and reform of our social care system seems to have been passed over yet again, making us worry that by the time the Government decides on what it wants to do to ‘fix social care’, as it has promised, there may not be the funds left to do all that needs to be done.”
“After so many disappointments there’s bound to be a concern that social care is destined to be always the bridesmaid and never the bride, and unfortunately today’s Budget did nothing to alleviate our anxiety.”
What was announced in the budget regarding social care:
A COVID-19 response fund of £5bn is to fund NHS and support LAs to manage pressures on social care.
From the Government Red Book:
“1.90 COVID-19 response fund – HM Treasury is creating an emergency response fund, set aside to ensure the National Health Service (NHS) and other public services have the resources they need to tackle the impacts of COVID-19. Initially set at £5 billion, it will fund pressures in the NHS, support local authorities to manage pressures on social care and support vulnerable people, and help deal with pressures on other public services. The size of the fund will be reviewed as the situation develops, to ensure all necessary resources are made available.”
Also as already announced, £1bn for adult and children’s social care next year.
“1.111 The government is committed to long-term reform of adult social care and the Secretary of State for Health and Social Care has written to parliamentarians to begin building cross-party consensus on reform. Ahead of those discussions, the government will invest £1 billion of additional funding for social care next year, as announced at Spending Round 2019. The Budget confirms that this additional funding will continue for every year of the current Parliament to continue to stabilise the system.”