The concept of personal assistance has been severely damaged by years of austerity and policies that have “degraded” the support mechanisms designed to enable independent living, leading figures in the disability movement have warned.
They were speaking at the launch of Personal Assistance Relationships, a research study which highlights how employing personal assistants can be empowering and liberating for disabled people, but also discusses the “complex” and “variable” nature of such relationships.
The disabled academic Professor Tom Shakespeare, who led the research – alongside Dr Andrea Stockl and Dr Tom Porter* – told the launch of the University of East Anglia study that “personal assistance works”, and that it provides disabled people with freedom and control.
He said it was “one of the revolutionary innovations of the disabled people’s movement”, alongside the concept of independent living.
And he said the government needed to see that it was “cheaper to support people in the community than to have them in residential institutions”.
Baroness [Jane] Campbell (pictured, in the House of Lords with one of her PAs), one of the pioneers of the independent living movement, a co-founder of the National Centre for Independent Living (NCIL), and now a crossbench peer, said the state of independent living and personal assistance was currently “very fragile”.
She said the last few years had seen a “crash” in the development of personal assistance, with the closure of the Independent Living Fund, cuts to the funding of centres for independent living (CILs) and political ideology that had “combined together to severely damage the whole concept of personal assistance and independent living, with support budgets being cut to the quick”.
She told the event that she was “very proud” to have been involved in the “heyday” of the “PA revolution”.
The origins of this revolution, she said, had been in the late 1970s and early 1980s when five disabled people “broke out of a residential home” by persuading the local council to “use the money used to warehouse them” to employ their own support workers in the community.
She later helped set up NCIL, which assisted CILs across the country to develop peer support, information, advocacy and training for PA-users.
She said that working at NCIL – where she was co-director – was “probably the best job I ever had.
“To see people grow in themselves and develop all these unique relationships was actually quite a wonder to be part of.”
But she contrasted that with the current situation facing disabled people.
She said: “I have seen disabled people who are desperately struggling to exercise choice and control because they are forced to offer [PAs] lower wages, fewer hours.
“For the first time since the gang of [five] broke out of residential care, disabled people face the horrific possibility of returning to warehousing.”
She added: “We are becoming judged solely on short-term economics rather than being measured against article 19 [on independent living] of the UN Convention on the Rights of Persons with Disabilities.”
Mark Harrison, chief executive of the Norfolk-based disabled people’s organisation Equal Lives – which was a partner in the research – said the infrastructure of support around personalisation and independent living had been “degraded” over the last decade.
He said that local authorities – and Equal Lives – had lost about two-fifths of their funding, while disabled people “have had their personal budgets slashed and in many cases their eligibility removed”.
He said that using PAs and giving people choice and control produces better outcomes and is more cost-effective than care provided by agencies or the private sector or managed by local authorities.
He said: “I would think in a time of austerity it would make sense to expand [but] in Norfolk and Suffolk it is going the other way, actually the numbers are going down.
“All that independence, all that personalisation, has gone. The cuts are driving everything and it is degrading the whole system.
“It seems to me we are going backwards, [and in Norfolk] everything is about meeting savings targets.”
He added: “How can we get back that vibrancy that Jane talked about, that social change element, that liberating element?
“At the moment, everything seems to be going to the lowest common denominator and care agencies are clearing up.”
Kevin Caulfield, of Hammersmith and Fulham Coalition Against Cuts, said that the “fallout” from increased charging for support and the closure of the Independent Living Fund meant that “lots and lots of disabled people who had access to good personal assistance and independent arrangements, those have been destroyed”.
But in his borough, the Labour-run council had abolished charging, ringfenced the funding people had previously received from ILF, and set up an independent review of the decision by a previous administration to scrap a direct payments support service.
He said: “We are really trying to buck the trend in Hammersmith and Fulham, saying it doesn’t have to be like this.”
Tracey Lazard, chief executive of Inclusion London, said that social care was now a “hot political issue”.
She said: “We have to grab that and make the most of it.”
But she warned: “At the moment, disabled people are not even being talked about in social care. It’s older people.”
She said there was “potentially a change coming”, because of greater public and political discussion of austerity, which could be “a moment for us to start pushing back” against cuts to social care.
Shakespeare said that personal assistance “has to be part of government thinking”, as it prepares to publish a green paper on adult social care.
He said: “It’s a proven model. We know it works [but] we need to make it work better.
“I would hope any government would see that it is cheaper to support people in the community than to have them in residential institutions.
“Living independently in the community is what we all deserve.”
Tracey Jannaway, director of the PA services social enterprise Independent Living Alternatives – another partner in the research – said there was still “a lack of understanding of what personal assistance is, the difference between having a PA and having a care worker”, while many still thought: “What does it matter?”
She said there needed to be efforts to “change that mentality… away from the concept of care and towards personal assistance.
“There will always be [disabled people] who want [traditional social care] but for people who want personal assistance, it still needs to be pushed and explained to people again and again and again.”
*He can be contacted by email at [email protected]