Shocking survey results show ‘yawning gap’ between Care Act and real life

Original post from Disabled Go News


Woman in wheelchair

Nearly half of disabled people receiving care and support from their local authority say their quality of life has fallen in the last year, despite major new legislation designed to boost their well-being, choice and control.

The survey of 399 disabled people was carried out by the Independent Living Strategy Group (ILSG) – some of whose members were part of the independent living movement in the 1970s –as part of a report assessing the impact of the Care Act 2014 on choice and control.

The group was set up by a broad range of disabled activists and disability organisations concerned about the potential impact of welfare reform and cuts to public services on independent living, and the government’s failure to follow through on its 2010 pledge to monitor the implementation of Labour’s independent living strategy.

Members of the group include Baroness [Jane] Campbell, the leading activist John Evans, the Spinal Injuries Association, Inclusion London, Scope and Disability Rights UK.

Their report was funded and published by In Control, the charity which helped develop the idea of personal budgets*.

ILSG members wanted to find out how local authorities were following “the spirit and letter of the Care Act and its statutory guidance in seeking to optimise choice and control”, which they say is “fundamental” to the Care Act’s “core purpose” of helping people achieve the outcomes that matter to them.

More than 45 per cent of those surveyed said their quality of life had reduced over the past year, including 18 per cent who said it had fallen significantly.

Almost 30 per cent said they had experienced a reduction in choice and control over their support in the past year, while only eight per cent said it had increased.

And nearly 30 per cent of respondents said restrictions had been placed on their use of direct payments or personal budgets.

The report warns that social care spending by local authorities had already fallen by £4.6 billion from 2010-11 to 2014-15 – a real terms cut of 31 per cent – while the government’s imminent spending review had “opened the door to even deeper cuts in the years to come”.

Some councils have introduced restrictions on how disabled people can spend their personal budgets, such as banning them from using them to pay for gym memberships, or for personal assistants to accompany them on outings.

Others have imposed a “cost ceiling”, which means the council will pay no more for independent living than the cost of a residential care placement, despite Care Act guidance making it clear that such practices are unacceptable.

The report calls on central government to ensure that funding to local authorities is “sufficient to enable them to meet their statutory obligations as a minimum, let alone the broader goals and aspirations of the Care Act in respect of prevention and well-being”.

But it also says that there are many things councils can do, “irrespective of their financial position”, to promote choice and control and “strive to meet the letter and spirit of the Care Act 2014”.

Jenny Morris, one of the report’s authors and another ILSG member, said the survey results were “very shocking”.

She there was a “yawning gap between the welcome principles of the Care Act 2014 and what is actually happening to older and disabled people”.

She said: “The whole value system behind personal budgets is incompatible with the massive reduction in expenditure on social care which local authorities are facing.

“There are some local authorities where a significant proportion of social workers and managers are not signed up to the choice and control agenda, but any progress is being made almost impossible by the massive reductions in the funding available.”

She said: “Personal budgets were supposed to enable everyone who needed social care support to have the kind of choice and control that was previously only open to those receiving direct payments.

“Instead, they have been rolled out in the context of a major financial crisis facing adult social care, and the result is not only a reduction in choice but also a decrease in the quality of people’s everyday lives. This is the government’s responsibility and they must act.”

She said ILSG would continue to monitor the state of independent living, including through future surveys.

And she called on councils to “make it clear to government that the current financial climate is incompatible with what they are required to do, according to the Care Act and the statutory guidance that accompanies it”.

Sue Bott, deputy chief executive of Disability Rights UK, added: “Local authorities might argue that it is early days in the implementation of the Care Act, but if you don’t start as you mean to go on then the spirit of the act will never be implemented.

“This report demonstrates, and the calls to our advice line also show, that disabled people are being denied choice and control over how support needs are met and that independent living is being fundamentally undermined.”

*A personal budget is a sum of money allocated by a local authority to meet a person’s care and support needs, while direct payments allow a disabled person to take such a care package as a cash payment

News provided by John Pring at


Hi I’m Aden, I work at DisabledGo as the Digital Marketing Manager and I manage the blog and all social media channels.

More posts from author   …………’

Personalisation – are some people missing out?

Original post from Think Local Act Personal

‘…………by Dr Naomi Harflett, Research Manager, National Development Team for inclusion (NDTi)

Ahead of Learning Disability Week, Partner organisation National Development Team for Inclusion (NDTi) have published a review of the impact of personal budgets on the lives of isolated people with learning disabilities. Dr Naomi Harflett describes their findings.

We know that personalisation can improve the lives of people with learning disabilities. The Personal Outcomes Evaluation Tool (POET) survey found that more than two thirds of people with learning disabilities reported that a personal budget had made a positive difference to the control they have over their support. Over 60% said that having a personal budget made a positive difference to their mental wellbeing.

But, is personalisation working for everyone? Does everyone with a learning disability experience the positive outcomes of personalisation equally? These are some questions we’ve been thinking about recently at NDTi. Through our learning disability work across the country, one area we’ve become particularly interested in is the impact of personalisation for some of the most isolated people with learning disabilities. Do people in residential care or out-of-area placements have the same access to personalised approaches as other people with learning disabilities? Do those with complex/multiple needs or challenging behaviour benefit from the positive outcomes of personalisation? Do those who don’t have close friends or families to advocate for them get the best outcomes from personal budgets and direct payments?

Today we’ve published the findings of a short review of the impact of personalisation on the lives of isolated people with learning disabilities.(opens new window) Although we didn’t find any research which has specifically looked at the impact of personalisation for the most isolated people with learning disabilities, we found a number of studies which have relevant findings.

In summary the findings suggest that some of the most isolated people with learning disabilities i.e. those living in residential care or out-of area placements, people with complex/multiple needs or challenging behaviour and people without close friends and family:

  • are missing out on various aspects of personalisation altogether (e.g. personalised care and support plans, personal budgets etc.);
  • do not have access to the support or resources to get the most positive outcomes from particular elements of personalisation; and
  • are less likely to have access to advocacy – the mechanism which should be in place to address this inequality.

The limited research in this area means that these findings are tentative. We need to know more. In 2012-13 there were 35,025 adults aged 18+ in local authority funded residential or nursing care and the number of adults with profound and multiple learning disabilities is predicted to rise. As personalisation is a core element of current and future health and social care policy and provision, it is a real concern if some people are missing out.

We want everyone to benefit from the positive aspects that personalisation can bring.

At NDTi we’re planning to do some further work to find out more about who is missing out and what can be done to address this. We welcome any views, comments or examples of research or practice in this area which could inform this work. If you would like to get in touch, please contact Naomi Harflett, Research Manager at or 01225 789135.  …………..’