For many years, disability campaigners have pointed out that the system of charging for daily living support (community care, or home care, charging) is effectively a tax on disability. Apart from the general injustice, it particularly discriminates against those with the highest needs, as they will be more likely to be limited to an income just above poverty levels; it discriminates against people reliant on a pension income because this is taken into account for the purposes of charging whereas an income from wages is not; and it prevents people from building up savings which might be needed to pay for expensive equipment or adaptations
It is perhaps inevitable that charging for adult social care has become common practice, given increasing demand and insufficient funding from either general taxation or local council taxes, together with diminishing political support for a universalist approach to ‘welfare’. But one London borough has bucked the trend and in 2014 abolished this ‘tax on disability’.
How did this come about?
It was the result of strong campaigning by a small group of local disabled people; the willingness of local politicians to learn about the impact of policies on people’s lives; and the election of people who not only made promises but then delivered on them.
Hammersmith and Fulham Campaign Against the Cuts was formed in 2006, in response to a newly elected Conservative-led Council which - according to David Cameron - was a ‘model’ for the policies he would pursue in government. Though only a small group of disabled people, they made a big impact, launching a legal challenge to the imposition of community care charges which although unsuccessful delayed its introduction.
By the local Council elections of 2014, HAFCAC had learnt how to get the voices of disabled people heard in context of local electioneering. They asked all the Parties about their policies on disability issues, collated the responses and publicised them. Voters very rarely get pre-election material about disabled people’s concerns so HAFCAC distributed leaflets outlining issues for disabled people. They hired a minibus and took to the streets to talk to people about voting, setting up a market stall - “All this created a real buzz” says, Kevin Caulfield, Chair of HAFCAC “with some people saying things like ‘I wasn’t going to vote but you made me realise it’s not just about me’”.
Steve Cowan had been Leader of the Labour opposition on Hammersmith and Fulham Council since 2006. Like many Labour Party politicians and activists, he had, he says, understood “disability to be an issue of discrimination and rights” but recognition of the impact of social care policies on disabled people’s daily lives only came about through his contact with people who were living the impact of such policies.
One of these was Debbie Domb, a member of HAFCAC, who Steve said “took it upon herself to educate me. She would have me round her flat - at this point I was Leader of the Opposition - and as far as she was concerned I was going to need to know a lot more stuff than I did. And so she would talk to me about what was needed.” Debbie and others talked to Steve about not only the unfair ‘tax on disability’ that charging represents but also the importance of the money from the Independent Living Fund which enabled people with high support needs to go about their daily lives. The ILF was abolished in July 2015 and responsibility handed over the local authorities. Many people fear their funding will be reduced and control over their lives will be diminished.
The Labour Party manifesto for the local elections in Hammersmith and Fulham in 2014 included the promises that, if elected, Labour would abolish home care charging.
Labour won control of the Council, taking 11 seats from the Conservatives (giving them 28 seats to the Conservatives’ 20). The new Council quickly announced that they would maintain the levels of support provided to people who were transferring from the Independent Living Fund. And, on December 3rd 2014 (the International Day of Disabled People) Steve Cowan announced the abolition of community care charging from April 2015. As he says, this was an illustration of a different approach to the tightening of resources facing all local councils:
In opposition I watched as Hammersmith and Fulham Council took the easy option of cutting services or introducing new charges for people, often in desperate need of those services, while elsewhere they were wasting millions of pounds of public money. [Instead] we were able to pay for the abolition of home care charges by shutting down council magazines, removing lamp post vanity banners and shutting down other propaganda.
The shift in priorities was encapsulated by Kevin Caulfield who welcomed the abolition of charging. saying:
We have campaigned hard for eight years against this unfair tax on disabled people just for having our needs met. Every other non-disabled HF resident would view it as an absolute violation of their human rights if they had to pay an invoice from the council before they could use the toilet, get washed and engage in day to day activities. We are over the moon to have a Council that now understands that.
Hammersmith and Fulham Council is taking an approach to developing policy which opens them up to the impact of their decisions on people’s lives. The pressing need to do things differently was illustrated immediately following the 2014 election when Councillors were faced with angry parents of disabled children, who had been let down by the recently commissioned school transport service.
Steve Cowan told me
This had been privatised by the Conservatives and commissioned as a new service with Westminster and Kensington and Chelsea Councils. It had gone live in April 2014 and we won control of the Council on 22 May 2014. We were very quickly contacted by parents giving us examples of how that service is causing serious harm to their children – all of whom were disabled.
The response from senior officials was very disappointing..… In one early meeting on 11 June 2014, where officials had been unsuccessfully arguing these were no more than teething problems – one official lost his temper and claimed that this particular group of children had “had been treated like royalty for too long”. They were not on top of the issue which became extremely evident when we had a public hearing on the matter on 8 July 2014.
This is what happens when people making decisions about services have little or no contact with the people actually using the service. This is why disabled people have argued for many years that policy should be co-produced with the people whose lives it affects.
Unfortunately, many politicians and professionals use the word ‘co-production’ with little understanding - or real commitment - to actually co-producing policy and services with those whose lives are affected by policies and services.
This widespread lack of understanding about what co-production actually is, is further promulgated by, for example Care Act guidance which says that it is “when an individual influences the support and services received, or when groups of people get together to influence the way that services are designed, commissioned and delivered”.
This is not co-production - it belongs more to the era of so-called ‘user involvement’, which is usually little more than consultation after a policy or service has been developed. Instead, as the Office for Disability Issues said in 2009:
Co-production means working together to develop a policy or a service. We use the word to refer to two situations: a group of people working in partnership with government and other public bodies to develop, implement and evaluate/review a policy which affects their lives; groups of people, or individuals, working with service providers to design, deliver and evaluate/review the services they use.(1)
In other words, co-production means working together in partnership to jointly produce something - not asking people their opinions of something which has already been decided upon.
Hammersmith and Fulham Council are now setting up a ‘Disabled People’s Commission’, with the aim of:
working in partnership with Disabled residents to create new and innovative ways of engaging with Disabled people by co-producing policy design and decision-making, as well as service commissioning and delivery.
If they do manage to achieve this it will provide a model for how policy-making and service delivery could be done differently by local Councils, and inspiration to other local disability organisations who are often struggling to make an impact on local services at a time of major cuts in services.
(1) This definition was used in advice to those seeking to the deliver the Right To Control, an initiative of the last Labour government, which was discontinued by the Coalition government after it took office in 2010.