Accelerating closure of user-led bodies, amid care cuts, creates ‘perfect storm’ for disabled people

At a time when public spending cuts are increasing disabled people's needs for peer support and advocacy, the organisations providing this are shutting their doors at an increasing rate, warn campaigners

Disabled man giving a talk
Picture posed by models (seventyfour/Fotolia)

On 30 April, the Liverpool Mental Health Consortium (LMHC) will close its doors forever. The user-led organisation has supported local people who experience mental distress for 24 years, but has fallen victim to funding cuts.

In 2013, it lost core funding from Liverpool City Council. Four years later, the local clinical commissioning group – another key funder – followed suit and withdrew all funding for voluntary sector groups. The organisation managed to secure one year’s funding from the Wellcome Trust, a charitable foundation, for 2018. But it has not been able to find any further funding going forward.

A statement on the LMHC’s website said: ‘at the time we are most needed, nobody will fight for us.’

The LMHC is not alone. In the same week it announced its closure, Disability News Service (DNS) reported that the advice centre run by user-led group Possability People, which has helped thousands of disabled people with benefit issues, would be closing after Brighton and Hove clinical commissioning group withdrew 85% of its funding. It’s the only pan-disability advice service available in the city. DNS reported that the cut meant the service would have to stop supporting offering face-to-face advice and only provide a restricted telephone service instead.

About user-led organisations

The roots of ULOs and DPOs can be traced as far back as the 1960s and the civil rights movements; the first centre for independent living was set up in Hampshire in 1984.

DPOs led the successful campaign for direct payments in social care, culminating in the Direct Payments Act 1996, and were also instrumental in their implementation as providers of information, advice and advocacy to disabled people managing their own care and staff (John Evans, The Independent Living Movement in the UK).

These are just two examples of the decline in user-led and disabled people’s organisations, which campaigners warn are being stripped back or forced to close completely at an accelerating pace. This is removing vital sources of advocacy and peer support from disabled people at a time when such help is ever more vital, in the face of the welfare and care cuts many are experiencing, they say.

Wave of closures

Becky Meakin, general manager at Shaping Our Lives, a national network of disabled people and user-led groups, told Community Care ‘not a week goes by without a notification that someone is closing’ – and they’ve already seen 124 organisations (28% of their members) shut up shop.

Tracey Lazard, chief executive of Inclusion London, an umbrella organisation for deaf and disabled people’s organisations (DPPOs) in the city, said there were now 12 London boroughs without a disabled people’s organisation in place, and a further five with one that is “not really functioning”.

Research by Reclaiming Our Futures Alliance (ROFA), which represents disabled people’s organisations (DPOs), also found that the number of DPOs operating in England has fallen by 25% (from 346 to 245) since 2011.

Loss of core funding

All three pointed to the lack of consistent, core funding as a key factor behind the closures – and the funding cuts experienced by local authorities and health services are a big part of this problem.

Association of Directors of Social Services (ADASS) data shows local authorities have had to make savings of £7bn to their adult social care budgets since 2010, once inflation and demographic pressures have been taken into account, though this has been partially offset by recent government injections of cash.

“For most DPOs their central funder has been the local authority so that’s had a massive impact – but we’ve also seen some organisations being silenced because of challenging a local authority’s budget processes or cuts, for example, and then the funding for that DPO gets cut,” said Lazard.

An ADASS spokesperson acknowledged that user-led organisations and advocacy play “an important role” in giving people who receive social care and their families control of their care and support, but warned councils “continue to face uncertainty and ongoing cuts”.

He added: “Our snap survey last year showed directors of adult social care have serious concerns about whether the funding available will be enough to enable them to meet their legal duties to provide care and support for older and disabled people with substantial and critical needs.”

‘Not designed to churn people through a machine’

There are also issues with funding from charitable trusts and foundations, Meakin added. These have been key funders for ULOs in the past, she said, but due to increasing demand they are becoming more focused on who they give money to and shifting to a different model.

“I think it’s a case of demonstrating to these foundations that every penny they’re spending has a return, so we’ve now got into the zone where almost all funding is related to a project-led model.

“The requirement is to get X number of people through a project and show how it has improved their outcomes – it’s all measured by how many people come out the other end feeling better.”

She added: “This model doesn’t provide the sustainable funding ULOs need. They’re not designed to churn people through a machine – they are designed to provide advocacy and peer support.”

Lack of understanding 

A lack of understanding – both at local and central government levels – around the added value a local user-led group or DPO has to offer – is also exacerbating funding issues.

Lazard said Inclusion London are currently doing work with charitable trusts to raise their awareness about DPOs and many “still don’t get” why it’s appropriate for disabled people’s services to be run by disabled people – and there is a “pushback” around accepting this.

“They get that it’s not really appropriate for services for women who have been a victim of gender-based discrimination or violence to be run by men – that argument has been won,” she said.

“But they don’t understand that equally applies to disabled people, which is ultimately because they don’t understand the social model of disability – so we have to keep making that argument.”

She added that this often means trusts are giving considerable funding to the large UK disability charities instead – but these are “still not run by disabled people and still don’t represent us”.

This issue was also highlighted by the ROFA report, which said that many funders in the sector still do not know the difference between DPOs and the large disability charities and these are a direct competitor for local authority contracts across the country, “depriving DPOs of potential income”.

Rise and fall in government support

Under New Labour, government policy supported the development of DPOs. The 2005 Improving the life chances of disabled people report, published by the Prime Minister’s Strategy Unit in 2005, made a recommendation that every council should have an organisation run and controlled by disabled people in place by 2010, a commitment repeated in the 2008 Independent Living strategy.

While it is not clear whether this objective was met, the 2010-15 coalition government continued to support the development of DPOs. Its Strengthening disabled people’s user-led organisations programme provided £3m to 180 projects from 2011-15 to promote the sustainability of ULOs and DPOs.

However, from 2015-18, there was no similar focus or funding from government to develop DPOs. At the end of last year, the Office for Disability Issues announced it would set up a regional stakeholder network to enable disabled people and their organisations to influence government. The chairs and members of the regional groups are due to be announced shortly after applications to join closed earlier this month. Chairs will be able to report directly to ministers.

A spokesperson for the Department for Work and Pensions, which is responsible for the ODI, said: “We are committed to listening to the voices of disabled people, which is why we’re building a new regional stakeholder network to strengthen our engagement with disabled people’s organisations across the country.

“By working together we can break down the barriers that disabled people face in their daily lives, building a more inclusive society that works for us all.”

But stakeholder groups are not a substitute for central funding or a policy objective to develop ULOs and DPOs.

No statutory requirement

This leaves the fate of ULOs largely in the hands of local funding bodies, in a context where there is no statutory requirement on public bodies to engage with or fund user-led groups in England. While the Social Services and Well-being (Wales) Act 2014 requires local authorities to promote the involvement of persons for whom care and support or preventative services are to be provided in their design and operation, there is no such requirement under the Care Act for English councils.

The Care Act’s statutory guidance makes references to ULOs as providers of care and support, information and advice, and support for direct payment users. However, in almost every reference, ULOs are bracketed with other types of organisation, including charities, voluntary bodies, micro-providers or community interest companies, rather than having any distinctive value identified.

The UN Convention of the Rights of Persons with Disabilities (CRPD), an international treaty signed by the UK in 2009, says states should consult and involve disabled people, through their representative organisations, in the development, implementation and monitoring of disability policies. But this is not domestic law.

However, there is the Equality Act 2010, and, more specifically, its public sector equality duty, which requires public bodies to have due regard to the need to reduce inequality, including between disabled and non-disabled people.

Both Meakin and Lazard point to this act having motivated public bodies to fund ULOs and DPOs, particularly through the duty’s requirement for agencies to have due regard to the need to encourage participation by disabled people in cases where it is disproportionately low.

“We would argue that the CRPD and the Equality Act taken together are clear that public bodies should be funding DPOs – they are a really important way of exercising those duties,” Lazard said.

UN criticism

However, the UN committee on the rights of persons with disabilities’ 2017 review into how the UK was applying the CRPD served up a set of damning conclusions in this area.

The final report expressed concern about the challenges facing DPOs and the lack of sufficient mechanisms to ensure the effective participation of these organisations in decision-making processes concerning relevant policies and legislation. It recommended that the UK government allocate financial resources to support DPOs and develop these mechanisms. The ODI announcement on regional stakeholder groups appears to be a response to this call.

At the time of the 2017 report, the chairman of the committee also slammed the UK’s welfare reform policies and care cuts for having “totally neglected” the need of disabled people and creating “a human catastrophe”.

Link drawn with care and welfare cuts

Meakin drew a link between the impact of cuts to social care and welfare on individuals and the reduced capacity of ULOs.

“This is a problem I’ve started to raise more recently – the capacity of individual disabled people is considerably reduced now and people are finding it very difficult to survive,” she said.

“They are fighting cuts and are living generally on much reduced care packages so their own capacity to take part and to support and advocate for others is greatly reduced as well.”

Ultimately, she added, the benefit of having a ULO or DPO is that “collective voice” – they bring together the skills and lived experience from a range of people in a particular diversity group.

‘Perfect storm’

But what Meakin is seeing instead – in areas where these groups have closed – is “well meaning volunteers, who will be trying to help out a few people they know”. However, because there is such a diversity in health conditions among people with disabilities, these volunteers don’t necessarily have the expertise to provide the appropriate support that might be needed, she added.

This was echoed by Lazard, who concluded that the increasing demand means the phenomenon of DPOs “all existing on part-time staff but delivering full-time services is really common”.

“Disabled people have been disproportionately impacted by austerity and more and more they are no longer eligible for statutory support so they are coming to DPOs for help,” she said.

“But they are coming to DPOs at the very time these organisations are being cut, reduced and constrained in terms of speaking up for their communities. It is a perfect storm.”

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4 Responses to Accelerating closure of user-led bodies, amid care cuts, creates ‘perfect storm’ for disabled people

  1. Steve Marks April 29, 2019 at 2:32 pm #

    I find this article so sad. Its a proven fact that ULO and DPO are an essential part of empowering Disabled People to take control of their lives and live independently within their own communities. Unless the Government who want disabled people to get back to work put funding into these groups it remains a pipe dream. Most Local Authorities have a very low ‘disabled’ work force and even in these LA ‘user lead’ Networks have to fight to get adequate adjustments to make their employment sustainable. I’m proud to say I was one of the original people who lobbied parliament in order to get the Disability Discrimination Act made law. I’m afraid when it comes to making cuts in public funding ULO and DPO are the first to have funding removed, as an easy option and the funders forget how much work individual Disabled People put into making those projects work and attempt to make self sustainable.

  2. A Man Called Horse May 1, 2019 at 3:34 pm #

    You have to give due credit to the Tories in closing down all opposition to the Austerity agenda. The treatment of disabled people since 2010 has been nothing short of a national scandal. By closing down user led groups you take away any voice for the disabled. Reduce legal aid to zero and you can effectively destroy their human rights to representation and silence the victims of cuts.

    We are truly living in an Orwellian nightmare. Welcome to 1984

  3. Jon Hyslop May 3, 2019 at 2:42 pm #

    Our paper just published in Disability & Society shows the critical role played by CILs, DPULOs and other peer networks in developing and implementing personalised care and personal budgets. It’s almost unbelievable that ULOs should be disappearing at the same time that adult social care services are increasingly accepting the importance of community models, and the NHS is rolling out personal budgets nationally.

  4. Fred Parsons May 8, 2019 at 4:40 pm #

    Sadly, it’s the same for carers and carer-led organisations. But then, they’ve always taken the hind teat.