A consultation event set up by MPs to produce recommendations from members of the public on the future funding of adult social care has failed to ask any disabled people’s organisations (DPOs) to provide them with “expert” opinions.
DPOs have raised “deep concerns” about the way the Citizens’ Assembly on Social Care has been organised, and its failure to ensure that disabled people and their user-led organisations will have the chance to influence its conclusions.
The assembly will take place in Birmingham over two weekends, 27-29 April and 18-20 May, with up to 50 members of the public brought together to consider the best way to fund adult social care in England.
It is part of an inquiry into the long-term funding of adult social care being carried out by the Commons committees on housing, communities and local government and on health and social care.
But although the members of the Citizen’s Assembly will “reflect the wider community” and will include disabled members of the public who are users of social care, there are no DPO representatives among the “expert lead”, advisory panel and expert contributors who will address the Citizen’s Assembly on the first weekend.
Those experts set to address or advise the assembly include representatives of Mencap, Policy Exchange – the centre-right thinktank co-founded by government minister Michael Gove – Carers UK, Alzheimer’s Society, Reform (another centre-right thinktank), the Local Government Association, and – possibly – the Centre for Social Justice (founded by former work and pensions secretary Iain Duncan Smith).
There will also be a representative of the Care and Support Alliance (CSA), a network of almost exclusively non-user-led charities, but she also works for Alzheimer’s Society.
The event has been organised on the committees’ behalf by the charity Involve.
The Citizens’ Assembly’s findings will be published on the committees’ websites this summer, and its findings will be considered alongside other evidence submitted to their inquiry.
The inquiry’s conclusions are set to be published ahead of the government’s planned social care green paper.
After being contacted by Disability News Service, the event’s organisers approached Inclusion London, a leading DPO, to ask it to take part, but only on the second weekend and only as part of a panel that will be asked to give “the wider social and political context of social care in England”.
Professor Peter Beresford (pictured), co-chair of the national service-user network Shaping Our Lives, said the “list of so-called experts and advisers is a list of the usual suspects”.
He said: “Where are the disabled experts, the mental health service-user experts, people with learning difficulties experts, etc?”
He said citizens’ assemblies had “well evidenced limitations” and “tend to reflect the usual exclusions and biases of mainstream society”.
He said: “This is a top-down initiative, so from the start it is difficult to see how they will reflect the concerns of the diversity of social care service-users and disabled people.
“Of course, there might be an argument for such a body if there weren’t local and national user-led organisations which have already made clear what they think is needed for social care: a service offered on the same terms as the NHS, committed to supporting the philosophy of independent living.”
He said the “predictable result” of the assembly would be “a safe mess, but a costly and wasteful one.
“We actually already have the evidence for decent social policy, [but we also have] an ideological and political unwillingness to take any notice of it on the part of this crumbling government.”
Linda Burnip, co-founder of Disabled People Against Cuts, said: “We are deeply concerned about the Citizens’ Assembly that is taking place on the future funding of adult social care.
“Any attempt to involve the voices of grassroots disabled people has been very last minute and yet social care is an issue that is having a very immediate and detrimental impact on our lives.
“Assembly members are ‘asked to make trade-offs and arrive at workable recommendations’, but without the views and interests of adult social care users at the heart of the process, we are concerned that those recommendations will not reflect the best interests of disabled people, yet through the assembly formation they will attain cross-party legitimacy and be seen to represent an electable policy on social care.
“What we need are politicians who are not afraid to stand up for bold solutions that will protect disabled people’s rights to independent living and to equal participation in society.”
Tracey Lazard, chief executive of Inclusion London, said: “Inclusion London welcomes the opportunity to speak about the wider social and political context of social care in England at the second weekend of the Citizens’ Assembly.
“We are disappointed that there hasn’t been greater engagement of Deaf and disabled people’s organisations and that the organisers have worked predominantly with charities to shape the assembly and select speakers.
“However, it is important for us to take this opportunity to put across the urgency of the situation facing disabled people who need social care support and to ensure that the needs and interests of disabled people of working age are heard.”
Sue Bott, deputy chief executive of Disability Rights UK, also said she believed there should have been representatives of DPOs among the advisers.
She said: “I’m sure such an assembly will make a useful contribution to the debate but the way in which it has been set up means that it can only ever be a partial contribution.
“I have no doubt that the advisory panel have a great deal of experience on the workings of care funding but what is missing is the expertise on the impact of care costs on individuals and their life chances.
“For that you would need to include, as advisors, representatives of people using social care services and their organisations.”
Brian Hilton, digital campaigns officer for Greater Manchester Coalition of Disabled People, said: “The fact that the voice of disabled people’s organisations are not represented on the advisory panels diminishes both their legitimacy and the knowledge base they draw upon on the important issue of social care funding.
“It also calls into question whether it was simply an oversight not to seek the involvement of DPOs, which is alarming in itself, or even more worryingly, is it that the knowledge, skills and experiences of disabled people are simply judged to be of no importance?”
A spokesman for the committees and Involve said the “recruitment criteria” for the expert panel had been “to ensure that the assembly’s plans and materials are factually accurate, comprehensive, balanced and unbiased”.
He said: “The Citizens’ Assembly on social care is considering alternative options for funding social care in the long term – for example taxation and insurance-based models.
“The first weekend covers different funding mechanisms, so speakers have been recruited for their specific expertise and perspectives on particular models.”
He said that recruitment of speakers for the second weekend was “beginning this week” and would be announced after the first Citizens’ Assembly weekend.
The second weekend will begin with a panel giving “the wider social and political context of social care in England”, and he said they were “approaching speakers from a user-led disability organisation for this”.
He said that CSA, which was “an umbrella organisation which includes DPOs”, had “been supportive in helping us shape the Citizens’ Assembly, including its advisory panel and speakers”.
He said that a CSA representative was contributing to the first weekend of the assembly, but when it was pointed out that that representative worked for Alzheimer’s Society, which is not a DPO, he declined to comment further.
Citizens’ assemblies have been used in the UK and in countries such as Australia, the US and Canada – with one currently taking place in Ireland – and aim to give members of the public the opportunity to learn about and discuss a topic before reaching conclusions, with members “asked to make trade-offs and arrive at workable recommendations”.