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‘Everyone Is Forgetting About Us’: New Research Highlights how Government’s Social Care Reforms Sideline those with Learning Disabilities

Saba Salman reports on a forthcoming independent study, part-funded by the Department of Health and Social Care – the findings of which are in stark contrast to messages from Boris Johnson’s administration around adapting to the Coronavirus and reforming adult social care

Prime Minister Boris Johnson at Westport Care Home in Stepney Green, east London, on 7 September 2021. Photo: Paul Edwards/The Sun/PA Images/Alamy

‘Everyone Is Forgetting About Us’New Research Highlights how Government’s Social Care Reforms Sideline those with Learning Disabilities

Saba Salman reports on a forthcoming independent study, part-funded by the Department of Health and Social Care – the findings of which are in stark contrast to messages from Boris Johnson’s administration around adapting to the Coronavirus and reforming adult social care

The Coronavirus pandemic’s enduring toll on people with learning disabilities is laid bare in new research, compelling the Government to include this overlooked group in its plans for social care reform.

Until now, evidence during the crisis has reflected the virus’ disproportionate impact on disabled people – a group that already experienced multiple inequalities before the pandemic. But forthcoming research led by Manchester Metropolitan University and the University of Warwick also includes people’s post-lockdown experiences. 

Byline Times has seen interim findings from the year-long ‘Coronavirus and People with Learning Disabilities’ study, due to be published next week.

Based on the experiences of around 500 people with learning disabilities and 300 family carers or support staff in England, Scotland, Wales and Northern Ireland, it shows that many people’s lives are still not back to normal. They are still having to shield without support, social care is not back to pre-pandemic levels (yet many are still paying for this), mental health problems are rife, and much face-to-face health support is still missing.

The findings are also a stark contrast to Government messages aimed at the public about returning to normality and learning to live with the virus. 

Chris Hatton, Professor of Social Care at Manchester Metropolitan University, told Byline Times that “the social care reform plans announced so far do not speak to the lives of the people, families and support workers who have shared their experiences with us”.

“The 18 months of the pandemic have shown us what impact the withdrawal of social care support has – people and families cannot afford to wait another three years or more for investment to come their way,” he added.

As Prof Hatton suggests, older people and the NHS are the priority under the Government’s recently announced reforms for health and social care. Yet, the majority of social care spending for working age adults is for people with learning disabilities.

Under the Government’s plans, the bulk of funding raised by a health and social care levy will go to the NHS. Meanwhile, the proposed £86,000 cap on people having to pay for their own care costs excludes daily living costs such as food and accommodation. There is also nothing to tackle the recruitment and retention crisis in care, with Mencap among the care provider charities warning of staff leaving for better paid jobs as delivery drivers or in supermarkets. Alongside this, there are fears of an exodus among care home staff who refuse compulsory vaccinations.

The inadequacy of the Government’s social care plans is highlighted by the upcoming research. For example, a significant number of people – almost 20% – are still shielding, according to family carers and paid support staff; while only 35% of people with learning disabilities say they have returned to everywhere they used to go before the pandemic. A similar number are unsure if their lives will return to normal, including everyday things such as being able to go out again and see family, friends and partners.

The research also finds that 50% of people with learning disabilities are worried to leave the house; with almost 60% saying that they feel angry, frustrated, sad or anxious some of the time. Barely any have support from a mental health professional for this, with wellbeing further undermined by ongoing restrictions on having visitors at home (almost 30% say that their support service has restrictions such as having to meet visitors outside).

Families and care staff also say that people they know have less support now – 48% have less support – and go out less than before the pandemic. A significant number of people with learning disabilities – 31% – also say that they pay for services that they do not receive.

Meanwhile, the impact of the Coronavirus crisis has been felt even more severely by people with profound and multiple learning disabilities, with families and support staff reporting that barely anyone’s lives are returning to normal.

According to Scott Watkin, a campaigner and head of engagement at the charity SeeAbility, normality is some way off because the Government overlooks the needs of people with learning disabilities. “The [Coronavirus] guidance isn’t clear enough,” he told Byline Times. “The Government hasn’t made any effort to make sure that it’s accessible… it’s just opened up the world and said ‘let’s get on with it’.”

Watkin tested positive for COVID-19 a week after restrictions were lifted in England on so-called ‘Freedom Day’ on 19 July. Although he was by then fully vaccinated and avoided going into hospital (“although I couldn’t even get out of bed and at times I felt I might need an ambulance”), Watkin said that the experience justified his fears about the end of lockdown. “I’d kept myself safe and clear through the pandemic,” he added. “Until then. I was sceptical about the restrictions being lifted. And I think I was right.”

He warned of the unacknowledged mental health impact on disabled people and told Byline Times that “mental health problems have gone up for people with learning disabilities and autism and this will keep rising because there’s no support system out there”.

On social care reform, Watkin believes that young people and working age people who need social care “can achieve just like anyone else, if we have the right support”.

“All we are seeing is Government and everyone forgetting about us,” he said. “We have the opportunity to challenge [inequality] and to get the skills to give back to the community and to work. But without good social care support, without people learning the skills to live independently… it won’t happen. And all of this is even more important because of COVID.” 

As the Department of Health and Social Care – which part-funded the forthcoming independent research – draws up plans to overhaul the system, it remains to be seen whether policy-makers and politicians will act on such warnings.

“There are clear implications for decision-makers in what people have told us,” added Prof Hatton. “In setting a course through and beyond the pandemic for the country as a whole, decision-makers must not forget that this course needs to work for every citizen within it.”

Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’ and the chair of the charity Sibs, which supports the siblings of disabled children and adults.

Her sister Raana has a learning disability and Saba has seen how the loss of face-to-face contact, reduced social activities and anxiety over the easing of restrictions have affected her mental health and wellbeing.

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