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.

6 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

  3. Gravatar of John WelshJohn Welsh
    posted 23 April 2018 at 11:42:22

    We will like a lot more PA Staff & PA Worker back in Northamptonshire & The East Midlands & Other Town in the UK with a lot more hours for me & Disability & Disabled People to help & Support me to sign up to get our own Business & Employment & Advocacy Group & CV & 1 To 1 & Bill & Bank & Holidays & Office Work & Meeting & Conference & Event for me & Disability & Disabled People with a lot more PA Staff & PA Worker in Northamptonshire & The East Midlands & Other Town in the UK & Disability & Disabled Club in Kettering & Northampton & East Northants & Northamptonshire & The East Midlands & Other Town in the UK with a PA Staff & PA Worker and to get our about with in the community and at home with a lot more Friends & Friendship & Relationship & PA Staff & PA Worker with to have a lot more better good choice of rights & Life in the community with a lot more PA Staff & PA Worker and lot more hours with for me & Disability & Disabled People in Kettering & Northamptonshire & The East Midlands & Other Town in the UK and a lot more help & Support to help & Support me & Disability & Disabled People to employers our own PA Staff & PA Worker with a lot more hours for me & Disability & Disabled People in Kettering & Northamptonshire & The East Midlands & Other Town in the UK for us today now.

  4. Gravatar of Leslie MacdonaldLeslie Macdonald
    posted 01 May 2018 at 20:08:33

    I just wanted to let you know the very difficult situation we are facing with our Council on behalf of people with LD in Reading who are, since 1st April 2017, being charged a contribution towards their care. The Council's policy is within the allowed limits of the Care Act, but they have chosen, against Care Act guidance, to apply the basic Minimum Income Guarantee figure. Also their assessment system is totally inaccessible for people with LD. People are now in debt, frightened, miserable and desperate, not knowing where to turn. We, like many local Mencaps, run a Lottery funded Family Support Service, which is now swamped with these cases but a prominent solicitor is now helping us, on legal aid, to assess if they can take a class action forward. We want the claiming of Disability Related Expenses to be much easier, we want them to allow a more generous Minimum Income Guarantee figure which is more conducive to health and wellbeing and also to make the system are more accessible for people with LD as well as letting people know that they can seek help from local charities. We are joined in this work by two partners who are other local charities who also have many services users in the same plight. The government needs to acknowledge this problem that the system is unfair to people with LD who cannot afford to pay anyway, generally get very poor care assessments which don't meet their needs and that the system was not designed with vulnerable people with LD in mind like so many other systems like Universal Credit, the bedroom tax PIPs etc., etc. Reading isn't a bad local authority but too many cuts to their local government grant has caused this misery. Leslie Macdonald, Chair of Trustees.

  5. Gravatar of DennisDennis
    posted 07 May 2018 at 15:46:43

    People with disabilities are still fighting to be seen and treated with respect. There are a lot of policies in modern companies that simplify the onboarding process for employees with disabilities. You guys are doing an amazing thing by speaking up.

  6. Gravatar of Heulwen BaworowskaHeulwen Baworowska
    posted 21 June 2018 at 21:49:26

    Sam the 72 year old carer of a severely autistic son and am refusing to pay care charges demanded by the London Borough of Camden from my son. I have protested to my MP Keir Starmer but he just fobs me off by forwarding me their replies. I spend £80 + per week on his poor health (he gets repeated infections) and he is dependent on supplements to function mentally. Before he got supplements he was like a zombie and couldn't learn anything. At 5, he was found by blood and sweat tests to have severe deficiencies of a number of vitamins and minerals to the point where he couldn't function mentally. He is non-verbal but can spell and was the first to get a university place in t he UK with severe autism. He is now 37. I desperately need more hours of Direct Payments but they refused because I was not paying the charges. I went to see a councillor recently and he fell asleep as soon as I started speaking. We can't use the NHS because everything they give him makes him worse and we depend on acupressure, osteopathy and homeopathy just to manage.

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