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My Pitch For Commissioner

February 23, 2016

Sir Stephen Bubb had recommended that we need a learning disability Commissioner. The role will have to two main functions: to co-ordinate and drive forward the plan to get people out of in patient services and institutions and into a home and life they can call their own. And secondly to hold to account any of the people and organisations responsible for making this a reality.

To be honest, it’s my idea of a job from hell but I thought I’d better pitch my application.

To remind ourselves, Sir Bubb got involved after the Winterbourne View Concordat went tits up. Perhaps, now is a good time to recall all the organisations who signed up for the Concordat with the rather grand title of “Learning Disability Professional Senate”. (Deep breath because it’s a very long list):

  • Action For Advocacy
  • ADASS (Directors of adult social services)
  • alds (Not sure what this stands for)
  • ADCS (Association of directors of children’s services)
  • ARC (Association for Real Change)
  • Autism Alliance UK
  • BASW (British Association of social workers)
  • BILD (British Institute of Learning Disabilities)
  • British Psychological Society
  • Care Quality Commission
  • English Community Care Association
  • Council for Disabled Children
  • Challenging Behaviour Foundation
  • Changing Our Lives
  • The Chartered Society of Psychotherapy
  • College of Occupational Therapists
  • Department of Health
  • Health Education England
  • Healthwatch
  • Housing & Support Alliance
  • Housing LIN
  • Independent Healthcare Advisory Services
  • Local Government Association
  • Mencap
  • National Forum of People with Learning Disabilities
  • National Autistic Society
  • National Care Association
  • National Housing Federation
  • NDTI (National Development Team for Inclusion)
  • NHS Commissioning Board
  • NHS Confederation
  • NHS Information Centre
  • NHS National Institute for Excellence
  • National Quality Board
  • National Valuing Families Forum
  • NHS Clinical Commissioners
  • Royal College of General practitioners
  • Royal College of Psychiatrists
  • Royal College of Speech and Language Therapists
  • Royal Pharmaceutical Society
  • Royal College of Nursing
  • Shared Lives Plus
  • sitra
  • Skills For Care
  • Skills For Health
  • The College of Social Work
  • Solace
  • United Response (“Making it happen”)
  • Voluntary Organisations Disability Group
  • The Christopher Biggins Appreciation Society

 

I told you there were a lot. (By the way, I slipped a fake one in there to see if anyone noticed). That is one heck of a gravy train. That achieved nothing and slipped away two years later.

Back to my pitch for the job of LD Commissioner. It’s four questions to all the people involved in the senate:

  1. Would you like to apologise to people with learning disabilities and their families for the “abject failure” of the Concordat and for the fact that progress in achieving the goal has been pitifully slow? (H&SA exempt as I recall Alicia Wood’s angry and moving piece after the Concordat dissolved)
  2. Would you like to donate the money you received for being part of the Concordat to the relocation package(s) of a person (persons) currently in an assessment and treatment unit.

3. Would you make a commitment to stop calling for others to do things and acknowledge your responsibility and accountability in making change happen?

4. Would you state what your organisation will be doing in the next twelve months to achieve the goal of releasing people with learning disabilities from in patient services/ATUS/institutions into a home and life they can call their own?

 

Cheers.

 

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From → Social Care

20 Comments
  1. Pauline Thomas permalink

    Who are the people who are activily supporting people with a learning disability other than their families? There are an army of support workers, carers and domicillary staff who are on the ground doing the supporting. They need to be recognised. There is plenty of talk from the organisations who purport to speak for learning disabled people but how many of them ever experience daily interaction with people with LD? It is the people on the ground who make the difference between a good life or a rotten life for our loved ones.

    If we want a support worker to value our loved ones, we need to value the support worker in return. No one wants to go to work feeling undervalued. Happy carers make better carers. Unfortunately there will always be people who just are not suited to their role as carers, just like there are people who are in charge of organisations representing people with LD who just have not got the empathy to do their job properly.

    We need to recognise that we will never get it right for people with LD who need support from carers until we get it right for the people doing the supporting. Unless the Bubb’s of this world realise this and come down from their ivory towers we will never get it right for our loved ones.

  2. weary mother permalink

    Having read this loooong loooong list of ‘campaigners’ , I can’t get the rhyme ‘Grand Old Duke of York’ out of my head!

    • All day long I’ve been feeling from the number of organisations in that team. It’s hard to think of any that are not there. And to achieve diddly squat is shameful. But still they carry on calling for this and that, totally oblivious to the (non) part they played.

  3. Why don’t you apply for the role of commissioner? I think you and Sara should do it on a job share basis.

    ________________________________

    • Thanks for the vote of confidence but wouldn’t touch it with a bargepole. I cannot imagine anything worse than sitting in a room with all those people on that list. I know this will sound pompous but my integrity is important to me.

  4. Jan permalink

    And ….. while, of course, it is important to get all people trapped in these institutions OUT and living in their own communities near their families with a support package that meets their needs (still a lot less cost than where they are!). It has been our experience that the LA’s are very reluctant to fund peoples care in their own homes in their own communities to avoid entering an ATU or similar. Even though their are laws in the Care Act and the Autism Act, the LA’s will avoid/refuse to follow those laws unless families use the law to force them! As everyone says it is up to us!!

  5. Emily permalink

    Well, I know you don’t want the job, but I think you would do a great job. The guardian social care network are looking for people to comment on the much anticipated final report- maybe you should test your book writing out on them?

    One last thing- where can I find details of the Biggins appreciation society membership so I can sign up?

  6. Sally permalink

    Mark, that list of organisations has left me with terrible mental pictures of the lot of them around a large oval table, leisurely, well breakfasted, paid. I can just hear the “concern without responsibility “drivel and see the empathic leanings forward. And they achieved nothing?
    I think the job requires somebody clear sighted, able to cut the crap and demand action, fearlessly devoted to improving the lives of the learning disabled. A kind of benign version of Stalin.
    Please consider the job. Think of the group rules you could put in place.
    No using of social care jargon
    Strict time limit on waffle.
    Immediate action required or large fines to be paid to day centres for the LD
    Tarring and feathering for most inert team members…

  7. Frannie permalink

    I attended all our local Winterbourne view concordat meetings as a volunteer /parent of a young adult who had been in an ATU , along with our local family support network.We put a huge amount of time and effort and offered valuable insight we wrote a report raising our concerns around the meetings and tried to chase up why we had no response only to discover that it had been disbanded and the commissioner leading it had moved on, no accountability there and like most parents/careers it had involved major planning for me to attend.Not to mentionthe salary cost of those paid to attend meetings that seemed ineffectual, on reflection a paper exercise of ticked consultation with families and service users, who felt left high and dry with no answers progress or accountability for non actions.

    • Pauline Thomas permalink

      Frannie that is terrible. What message is that giving to people who are desperate for change? . They are just paying lip service to us all. They are take the money and run boys. Shocking!

      • weary mother permalink

        Witness all the ‘consultations ‘ on ‘potential’ cuts in Services where parents make the long journey to LA headquarters often many miles from home hoping to be heard, when the decision to cut Services already been made and signed off.

        Families who attend meeting and raise questions are marked down as troublesome.

        Stinks. And is a measure of the value placed on family..
        None..

      • They, the state, do not value us, or our children, because we have no power.

        We, nor, our children, have any rights, that is why we, and they, are in such a dire position.https://finolamoss.wordpress.com/2015/07/07/autistic-parents-have-no-rights-and-the-private-corporate-parent-is-unaccountable/

        The state, can illegally under the MCA, remove, and encage our children for life.

        And cut us out of their life. And this is the only Adult Services policy, particularly if your child is young.

        Even if they die in state commissioned ‘care’, we have no remedy, so how could we possibly, ensure they have any quality of life.?

        Yet, it is our children that are being used, as commodities, with our public money

        And, it is us, and our children, who receive no support from the LA, from the money provided by government under the Chronically Sick and Disabled Act 1970, as this is reserved, for the on average £3,500 per week, paid to private institutions for basic, itinerant zero hour ‘care’, in addition to the huge amounts spent on the drugs needed, to allow this, which destroy our childrens minds and bodies.

        Our only hope is Europe, before we vote possibly to leave.

  8. Shirley Buckley permalink

    Mark before you could be commissioner they wouldtake Steven away from you – conflict of interest, of course.

  9. Julie Owen permalink

    I nominate Christopher Biggins then especially as his pantomime career is behind him.

  10. Jayne knight permalink

    I feel like screaming and glad you took Alicia out! You could choose who you sat round the table within you took the job. I can’t make breakfast but I can make heartfelt and sincere time to help and it’s know some amazing people who would come if you paid our bus fare and gave us a butty.

  11. Jayne knight permalink

    No glasses and typos but you get the gist.

  12. The signatories on the list shouldn’t receive money unless they show results, but inaction with moving into the community, is equally not addressing needs in the community.
    The move from ATUs often leads to desperate care planning.

    The main problem overall is that those with the most complex needs often get the most inexpert care; in the community as well as ATUs, and as community care can be even more unregulated than ATUs; private ATUs being worse than NHS ATUs, this could be out of the frying pan and into the fire.

    The starting point I feel is any contract between commissioners and providers – and this needs to be transparent.
    The support plans for community care that are signed up to can sound great, but implementing isn’t checked.
    Those who can’t speak for themselves more easily get the worst care, but those who can tell their families or others what they want are likely to at least get better care.

    The one common theme in most care placements is inexpert actual care, in ATUs and community, as the average care worker isn’t capable of understanding complex needs.
    So we must have at least one expert careworker who is a teamleader in Supported Living, for example, and parents or family experts advise and train.

    Any provider can say they provide care, and money is often the motivation, but for much more than £3500 (an average figure I saw quoted) I’ve personally seen in several months that no one cooks good food or even handles food hygienically, calls a GP or provide familiar activities. I try and lead on that from miles away, as I must, as it’s my son.
    I take time from work to address this, already resigned from a job before, and do a zero hour contract so I do some of the care myself, which means I suffer financially much more than the care workers!
    I do their work, which can’t be right, and deal with the emotional side, whereas they might be doing 10% of the work stated in the support plan, as they can – if it’s mostly unchecked.

    I know there are good careworkers out there and praise them (as well as good professionals), but there are more that aren’t good, and they ruin consistency of care that a good careworker might be giving, and consistency in complex care is an absolute must, with no compromises.

    And if a provider doesn’t like your concerns, they can give you 28 days notice, so we need safeguards, as we’re dealing with lives, not goods.
    Any commissioner must look at contracts for care with providers, share those contracts with families, so we all know what is being paid for. If a provider doesn’t carry out care properly, there must be penalties or special measures.

    Many professionals have said to me that I should get a personal budget and take control myself, which I appreciate, but we first need to have sight of the contracts signed.
    That’s my suggestion for an action for any commissioner.

    • Julie Owen permalink

      If your child was given a personal budget surely you could be a paid PA. Possibly other family members as well.
      The Care Quality Commission actively discourage agencies from taking on ‘risky’ service-users such as non-compliant service-users with complex mental health problems and those with ASD and behaviours that are difficult to manage.
      There are 60,000 vacancies in Social Care/Community Care and many providers are openly admitting that they are filling vacancies based on need rather than suitability.
      There are many issues to be addressed before Care in the Community improves for everyone.

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