Drawing on the wisdom of the disabled peoples’ movement to deliver the Prime Minister’s vision

The Prime Minister has said he wants social care to become a person-centred service. No group of people know more about what that means and how to make it a reality than the disabled people who use to a cash payment to authentically self-direct their own care. They are a source of knowledge and wisdom just waiting to be tapped into. But they are no longer seen in these terms. They are seen as a threat that has to be managed. It’s important to understand how that has come about, and what needs to happen change it.

 The history of direct payments

The meagre and institutionalising system created by the post war settlement for the care of older and disabled people led Paul Hunt, a resident at a Leonard Cheshire Home, to declare:

‘'We are tired of being statistics, cases, wonderfully courageous examples

to the world, pitiable objects to stimulate funding’

While Local Authorities had replaced the Poor Law administration, the essentially charitable nature of the Poor Law remained firmly in place. What the system considered ‘need’ was determined by whatever resource the State chose to make available.

Paul Hunt was part of the Independent Living Movement. They were disabled people who believed that care and support must not, and need not, compromise the fundamental human right to have control over one’s own life. They lighted on the simple but brilliant idea that if they were given the money it cost the State to institutionalise them, they would arrange their own support on their terms.

It worked. A handful of enthusiastic councils pre-empted the necessary change in legislation and piloted the innovation. A subsequent piece of highly influential research showed that a group with a cash payment who employed their own staff experienced hugely better outcomes at equivalent cost. Whilst they had over 40% more support hours, they cost about 40% less per hour.

It was a no-brainer.

Flexibility and sufficiency

The movement had identified the two essential ingredients for successful care and support  – flexibility and sufficiency. Using the cash to employ their own staff made it possible for the person to flex their support to the unique lived experience of their needs -  week to week, day to day and hour to hour. With regard to sufficiency, the combination of the good will of the volunteer councils and making simple value for money judgements ensured they had the money for sufficient hours of support.

Embedding the model

The problem in embedding the model was that the issue of flexibility was addressed, but sufficiency was not. The 1996 Direct Payments Act made it lawful for councils to provide cash in lieu of services. But the Act said nothing about sufficiency. People who wanted a direct payment would have to compete with everyone else on the same terms as everyone else from within their councils' budgets. They also benefitted from a separate government fund for top-ups.

But they had the wind in their sails. Both the New Labour and Coalition Governments of the first decade and a half of the new century saw direct payments as the future for all. Councils invested in the skilled support services required. Disabled people with a direct payment were seen as the pioneers ploughing the furrow for all to follow.

By 2016, a survey of over 1,000 service recipients by Think Local Act Personal found that it was only people with a cash payment, and a payment of sufficient size to meet leisure and social as well as physical needs who regularly enjoyed good outcomes.

It goes wrong

But something was becoming clear. Self direction through direct payments was not going to become the norm. Only a small minority had what it takes. Direct payment recipients ceased to be seen as pioneers. They had become escapees whose wings were to be clipped. The separate government fund for top ups was closed. The conditions applied to the mainstream who continued to rely on commissioned services would be applied to the escapees to the greatest extent possible:

·      the size of the payment would not be determined by outcomes, but by time and task and whatever resource led notions as councils chose to interpret their legal duties

·      flexibility in the use of the payment would be restricted to the greatest degree possible

·      funding for the essential specialist support services dried up.

This remains the case today. Self-direction with a direct payment remains the most certain route to personalised support. But it’s a constant battle for the people who opt for it to secure the two essential ingredients of flexibility and sufficiency.

Roadmap to a different future - flexibility

Not only did direct payments fail to address the institutionalising nature of the mainstream service delivered through commissioned services, neither has any other strategy. The search continues, hence the Prime Minister’s directive.

This is the challenge the Roadmap to Independent Living for All is designed to address The first milestone is rooted in delivery of the Charter for the Right to Wellbeing through a new Constitution. The effect will be to reverse the juxtaposition of the direct payment recipients who can self direct and the mainstream. Instead of looking to bring direct payments recipients into line with the mainstream, the mainstream will be looking to emulate the direct payments recipients. Commissioned services will need to replicate as best they can the flexibility that the Independent Living Movement discovered was the key to personalised support forty years ago, and which disabled people today continue to demonstrate.

We have set out elsewhere how that will require profound changes in the way councils commission services at the strategic levels, from commissioning for task and volume to outcomes.

Disabled people who can self-direct will be exemplars of the new practices, at both operational and strategic levels. They will become a local source of knowledge and wisdom in each council’s learning journey.

Sufficiency

The Roadmap’s approach to the second core element, sufficiency, is rooted in the UNCRDP concept of progressive realisation. Operational professionals will identify all needs at the individual level for wellbeing/independent living. Strategic professionals will be able to inform the political system of any gap between needs and funding and, crucially, advocate for the funding. They will have both quantitative information and, crucially, qualitative information in terms of the human impact. They will be in a position to play a leading role in changing the public narrative about social care from negative to positive. The rate at which the gap is closed will then depend on public and political will.

This is a significant departure from the settlement of the independent living movement at the time direct payments were made lawful. They accepted that disabled people would have to compete with all other local service recipients within the eligibility regime. Subsequently the disabled peoples’ movement campaigned for change through a legal right to all the resources required. Although inarguably an ideal solution, the campaign has had no impact. There is no prospect of it having any in the future.

There are, therefore, two options for disabled people to contemplate in their search for sufficiency of resource – progressive realisation of the resource for all, or continue to compete within the eligibility regime.

We have set out elsewhere how the shaky nature of the eligibility regime makes it vulnerable to skilled and determined self-advocacy. Disabled people who have what it takes to self-direct their own care often also have what it takes to self-advocate. They have had success in securing close to, or even the full level of payment they require.

Against that, however, the process is a source of considerable stress and anxiety whilst there is increasing evidence of the success rate reducing significantly. Cash payments are rapidly reducing as the available funding is ever increasingly squeezed.

Summary

The new Constitution envisaged by the Roadmap would restore disabled people able to self-direct their own support as exemplars and leaders within a transformed, person-centred system. The system can learn from and lean on their knowledge and wisdom. The essential dilemma for them relates to the resource issue at the individual level – whether progressive realisation or the eligibility regime is the best bet to secure resources.