Report on the Independent Living Survey 2016

In April 2015 the introduction of the Care Act in England radically changed the way in which care and support services are organised. The act places local authorities under a very powerful obligation. They are charged not just with having regard for, but with actually 'promoting' an individual's wellbeing. The act also covers many of the obligations the government has signed up to under the UN Convention on the Rights of Persons with Disabilities.  In this regard the Care Act is a very significant and welcome development.

However new duties are being placed on local authorities at a time of unprecedented cuts to their funding.) In the lead up to the introduction of the Care Act, adult social care departments have had to make 'budget savings amounting to 26 percent over the last four years, the equivalent of £3.53 billion'). Further, the Care Act is being put in place alongside a major organisational change to the way care and support for many disabled people is funded as the Independent Living Fund has now closed and its once ring-fenced budget has been transferred to local authority control.

This report, published by In Control on behalf of the Independent Living Strategy group, presents the findings of an online survey looking at what impact the Care Act is actually having on the day-to-day lives of disabled people living in England today.

Key Findings

Choice and control

  • Just under half (48%) of all respondents reported that the choice and control they enjoyed over their support was poor or very poor.
  • A third of respondents (33%) said that the level of choice and control they enjoyed over their support had reduced or reduced significantly.
  • Significant numbers of people reported a range of different restrictions being placed on how they could use the money available for their support: for example 50% of respondents reported support was restricted to personal care tasks only.


Quality of life and wellbeing

  • Well over half (58%) of respondents reported that their quality of life had reduced or reduced significantly over the past 12 months.
  • A quarter of respondents (25%) said the hours of work or volunteering they could do had reduced or reduced significantly.
  • Almost two out of five (38%) reported they are having to rely more on family and friends for support.
  • More than a quarter (27%) of respondents reported an increase or a significant increase in the amount of money they have to contribute towards the cost of their support.


Quality and amount of support

  • About the same numbers of respondents rated the quality of their support as good or very good (41%) as rated it poor or very poor (40%).
  • However, the amount of support was rated as poor or very poor by 44% of respondents compared to 30% saying the amount of support they had was good or very good.


Experiences of assessments and reviews

  • The majority (86%) of people reported that when their local authority had assessed their needs they had listened or partly listened to them.
  • Of those respondents who said their support had been reviewed in the last 12 months, just under two thirds (63%) did not know how much money was available for their support.
  • One in four people had been told their support would be reduced because of cuts/savings and/or there is a limit to the amount of money you can get for a particular service.


Experiences of former Independent Living Fund recipients

  • Two out of five (41%) former Independent Living Fund recipients reported that the amount of their support had decreased or decreased a lot, and one third (33%) said that their quality of support had got worse or a lot worse.
  • Around one third (34%) of former Independent Living Fund recipients reported new restrictions being placed on their support.


Information and advice

  • Over a third of respondents (37%) struggle to find the information and advice they need.
  • Most commonly people rely on friends and family (33%) and user led organisations (22%) for information and advice.
  • Only 16% used their local authority's website for information.
  • In terms of what people need advice and support with, just under a half (45%) said they needed help understanding their rights under the Care Act and a third (34%) solving problems with their local council.
  • Over half (51%) of direct payment recipients reported that the information, advice and support they get to manage their direct payment was poor or very poor.


Download and read the report in full below. You can also download the action planning tool taken from pages 12 and 13 of the report.

4 comments for “Report on the Independent Living Survey 2016”

  1. Gravatar of Tracy ElliottTracy Elliott
    posted 21 November 2016 at 08:46:33

    The current climate of cuts has been significantly higher in the section of society who are disabled. If an impact assessment was completed to this sector, it begs the question, who has been the hardest hit from the austerity?
    Disabled people have seen all the sections of their circle of support eroded or completely removed that impacts on every aspect of their daily lives. I'm not convinced that any other section in society has had such a significant inroad made in their daily lives.
    It is also worrying when looking at the increases in disability hate crime, press and television coverage of benefit fraud and very little mention of tax avoidance loopholes that need to be dealt with, which would reap much more revenue than chasing a few pounds from the small minority of disabled fraudulent claims.
    The current climate of hostility towards disabled people is very worrying, people don't ask to be born disabled and certainly is not something they would wish to become either, but yet there are many instances of people being intolerant, angry and discriminative towards disabled people for all sorts of reasons.
    We need a change in public attitude, making it as socially unacceptable to vilify disabled people as it is to drink drive. If we all speak out in this way, perhaps it will influence a change and maybe even get the big guns batting on our side.

  2. Gravatar of AndyAndy
    posted 22 November 2016 at 00:23:46

    ANYONE can get become disabled at any time. Perhaps if those trying to take money away from the most vulnerable should bear this in mind and concentrate more on stepping up corporation tax etc. This would avoid the suffering and distress being created through austerity measures, and provide funding from those who can at least afford it.

  3. Gravatar of Les ScaifeLes Scaife
    posted 22 November 2016 at 16:55:08

    Money is wasted by local authorities who have decided on using "Preferred Providers" rather than third sector organisations. These preferred providers are profit making organisations, and that profit is money taken out of the system that should be spent on care.
    Local authorities are overloaded with managers, in our county we have three levels of management, senior, middle and local. We can do without the middle tier of management and bring senior management down nearer the coal face to work with local management.
    Finally, with more people using self directed support we are now commissioning our own services, so there is no need for the army of commissioners that have been retained. I get the impression that local authorities are more concerned with retaining their salary and pension than delivering the care they are paid for.

  4. Gravatar of Stephanie Kirkman MeikleStephanie Kirkman Meikle
    posted 07 December 2016 at 13:25:17

    As a not-for-profit provider, we face dilemmas daily of how to meet the expectations of our clients, whom we have encouraged and supported to expand their horizons, whilst facing the realities of shrinking social care funding pots.
    There is no fat in the system: that's why private providers are leaving the filed or considering doing so. Here in the charity sector we are applying all of our resources to enable people to enjoy fulfilling lives. Fortunately there are grant making charitable trusts and Foundations willing to support this. With this support we are able to offer free access to training and support over a three year period to young adults with mild to moderate learning disabilities in the Harrogate area - we have been surprised that more referrals have not come through from health and social care!

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Last Updated : 12 December 2016. Page Author: philippa.barker.