openDemocracyUK: Opinion

Labour won’t commit to helping disabled people live full lives

Keir Starmer supported a radical plan that would allow disabled people to live independently – but only while he was campaigning to become leader

Chaminda Jayanetti
24 September 2021, 4.14pm
It should be the limit
James Williams/Unsplash

Labour has taken the chance to land free hits on the government after the Tories announced their plan to fund adult care from higher taxation. But neither side wants to talk about social care for disabled adults – which accounts for half the cost of all social care.

Disabled adults were neglected in the government’s recent announcements. And this summer, Keir Starmer angered disability activists by appearing to row back on a pledge to back a “radical” extension of such care.

During his leadership campaign last year, Keir Starmer told John Pring of Disability News Service that he supported a National Independent Living Support Service (NILSS) – a radical model that had been backed by a vote at the Labour Party conference in 2019.

“I would want to work with our members to further develop the position passed at our annual conference for a National Independent Living Support Service for England,” Starmer said in an email to Pring seen by openDemocracy, adding: “Everyone has the right to the support they need to live independently no matter where they live in the country.”

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The NILSS plan, developed by an consortium of organisations led by disabled people, is designed to enable them to live independent and active lives in their communities. Centrally funded and not means-tested, it would end the gatekeeping and minimalistic personal care that local councils and NHS organisations are often accused of providing, as well as putting an end to residential institutions.

Disabled people’s groups had grown impatient with Jeremy Corbyn’s leadership when – despite the 2019 conference vote – Labour’s general election manifesto that year ducked the issue of adult social care. It committed instead to introducing free ‘personal care’ for over-65s, with a view to extending this to working-age people down the line.

Personal care is more limited than independent living, even when it is defined more broadly than merely support with basic tasks such as washing and getting out of bed.

As Rachel O’Brien, policy and parliamentary officer with Inclusion London, explains: “The word ‘social’ in ‘social care’ is really important – independent living relates to social needs.” The NILSS plan “would see a planned end to institutionalisation and residential facilities, because we believe disabled people should be able to live in their own homes, choose where they live and be able to fully participate in communities”, she adds.

In 2017 a scathing report from the UN found that the UK was failing to uphold the Convention on the Rights of Persons with Disabilities, particularly in terms of enabling them to live full and independent lives, in their own homes.

Starmer’s support for the independent living plan during his leadership campaign seemed to open the door to long-overdue change.

‘Mask’s off’

But disability campaigners told openDemocracy that what followed was months of evasiveness, with warm words but no action or commitment from senior party figures.

And in June this year, shadow frontbencher Thangam Debbonaire caused a storm by reportedly telling disabled party members that such a policy would cost £100bn and “give the Tories a stick to beat Labour with”.

There was no known basis for the figure. NILSS supporters have brought in an economist to work on detailed costings – but dismiss Debbonaire’s figures as being implausibly high.

Her reported comments confirmed fears among disabled people’s organisations that they had been taken for granted and shunted aside.

“To have a shadow frontbencher, shadow leader of the House of Commons, just be like: ‘Nah, we don’t back it, it’s a pipe dream,’ it was just like, OK, mask’s off really – this is what you think about us, this is what you think of the number one priority demand that disabled people brought to you,” says O’Brien.

What is Labour offering?

Labour hasn’t been standing still. In a speech this spring, shadow social care minister Liz Kendall signalled her support for a ‘home first’ care model to enable people to live in their own homes for as long as possible, and a shift in support towards early intervention, though the focus was on over-65s.

“After a decade of cuts, help with things like shopping and cleaning, and community projects where volunteers spend time with older people to tackle loneliness and isolation, have almost entirely disappeared too,” Kendall said in her speech. “In a reformed system, this must change.”

“If this is a serious intention to invest more money into social care and support for independent living it is a welcome first step,” says Linda Burnip of Disabled People Against Cuts (DPAC). “However, the mention of volunteers to carry out essential jobs such as cleaning and shopping is not acceptable. Disabled and older people must have rights not be reliant on charity. 'Home first' sounds like typical politician bullshit,” she adds.

Chris Thomas, of the centre-Left think tank the Institute for Public Policy Research, sees some alignment between NILSS and Kendall’s direction of travel – targeting unmet need, reducing reliance on institutionalised care and lowering the barriers to receiving support.

“You could be struggling to do things like get dressed or go to the shops,” he says, “and still not be eligible for local authority support. So lots of people get denied.

“So the idea behind ‘home first’ is to shift that dial a bit so that people get support earlier, they get support that keeps them in their homes, their communities.”

There are differences, however.

Whilst NILSS seeks to end the role of private companies in service provision, Kendall has said little on privatisation in the adult care system.

Labour has no intention of taking councils out of administering the system, and despite the focus on early intervention, the party looks set to stop short of backing a legal right to independent living.

“Personal care would not extend to assisting someone to go to work, or volunteer, or go to the gym, or even see a friend,” says O’Brien.

“Would any non-disabled person be happy to live like that? Would they be happy to get out of bed, get dressed and just sit and stare at a blank wall all day? Why do we have such low aspirations for disabled people and how disabled people engage with public services?”

NILSS is also about “making the world accessible so that disabled people can lead equal and active lives with other citizens”, says Mark Harrison of the Reclaiming Our Futures Alliance, which has helped lead the development of NILSS.

Meanwhile Labour hasn’t restated on the record its 2019 manifesto commitment to free personal care for over-65s – although after the Debbonaire row this summer, Labour press officers insisted off the record that this commitment remained intact.

But under Labour’s 2019 plans, working-age disabled people would be left to wait.

Labour did not respond to a request for comment for this article. Starmer, like his predecessor, seems to have sidelined NILSS and the vision of the disability campaigners who formulated it, and is breaking a campaign pledge in doing so.

Where Labour seems to be headed would nevertheless represent a step forward from the inefficient, crisis-stricken patchwork provision that exists today. But faced with a choice between truly transforming adult care and reforming it, Labour is opting for the latter.

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