Losing control?

Over the past two years, a group of disabled people and allies from a range of organisations have been meeting to discuss concerns about the present state and future of independent living. Our first meeting was chaired by Baroness Jane Campbell, who chaired the Expert Panel advising the Independent Living Strategy during 2007.

The informal group includes disabled people who were part of the independent living movement from the 1970s as well as younger activists and others concerned with the future of independent living. The group has been discussing what we and others might practically do in the short, medium and long term to help protect people's access to independent living.

On the face of it, it might seem like the battle for choice and control has been won.  The Care Act says very clearly that local authorities must promote wellbeing which includes: 'control by the individual over day-to-day life (including over care and support provided and the way it is provided)'.  Personal health budgets enjoy ever-stronger political support.  The Minister for Disabled People has recently announced that personal budgets will be extended to Access to Work

But what we hear from disabled people and their families in many areas of the country is that the choices available to them and the degree of control they are able to exert over the support they receive are shrinking.

Some people have told us that their council has placed a cap on the amount of money that it will put towards their care thus limiting their choices. Sometimes this cap is equivalent to the cost of residential care. Others report restrictions being placed on how and where they can spend their direct payment or individual budget, for example through the use of heavily monitored payment cards.  In one case a council was offering people more choice and control if they chose not to take a direct payment or individual budget.

Such practices need to be challenged, including via the law if necessary, to make sure local councils are respecting people's rights to live independently and to be included in the community. Restrictions and caps could mean councils are failing to meet their obligations under the Care Act 2014.

We want to understand more about people's experiences of diminishing choice and control and to get a sense of how commonplace a situation this is.   We are also interested in good practice examples of local councils that have done the opposite in recent times, expanding, rather than contracting, choice and control.

To these ends, in April we will conduct a survey of users of social care and we would like to hear from as many people as possible about your experiences.   We would really welcome your assistance in promoting the survey to your own friends and networks.  Watch this space and look out for announcements on Twitter.

In the meantime, feel free to tell us about your experiences of choice and control using the reply form below.

2 comments for “Losing control?”

  1. Gravatar of John BrownJohn Brown
    posted 30 April 2015 at 20:23:37

    My daughter, 60 years old, has been successively in the care of CARE Ltd, Self Unlimited and now Hft for 40 years, living in Leicestershire but supported by Birmingham City Council.
    The funding she receives is upgraded slightly annually but over the length of time the total is now appears to be less than those living in care of the same organisation.
    I have asked for a review in the hope of getting an increase.

  2. Gravatar of Lisa WelshLisa Welsh
    posted 28 July 2015 at 07:08:39

    I am totally ILF funded and the whole change over has been a nightmare

    I had to chase my Local Authority to get a review done

    A Social Worker who just does not understand the whole process and lacks the how can we help you, it is more this is what needs to be done

    I will be glad when it is all sorted and I can get my life back and live it how I want

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Last Updated : 26 March 2015. Page Author: Gaynor Cockayne.