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Ask The Family

August 28, 2013

I remember Ask the Family from the 70s. Robert Robinson with his splendid comb over. Kevin wasn’t Kevin – he was Master Wilkinson. Audrey wasn’t Audrey – she was Mrs Wilkinson. Except when Robert Robinson was feeling a bit cheeky and then she might be called Mother Wilkinson. Even back in 1972, it all felt very quaint – a peculiar nod to a bygone era.

Christ – if only we had Robert Robinson today working in the adult social care field. In 2013, you don’t get quasi respect – you get totally ignored.

I’ve been trying to write a chapter on “Families” for the Carespeak book. Four days later, I’m still staring at a blank piece of paper. I want to try and put some historical perspective on it – has it always been the case that families of adult learning disabled people are invisible? If not, when did it change?

And I don’t understand the rationale behind the policy (because a policy is what it feels like – it surely isn’t natural to be so dismissive of people with a wealth of experience and knowledge).

I get confused by the very mixed messages. On the one hand, we hear daily of how the mental capacity act is abused in order for the powers to get their own way. Mental capacity assessments and best interests are manipulated to suit a particular agenda. Yet on the other hand, we are given all this stuff about independence and choice and that now the person is an adult, they should be exercising their independence and choice. But time and again, we learn that the independence and choice agenda is an illusion – a smokescreen for efficiency savings and other murky agendas.

Perhaps families have to be sidelined. The illusion couldn’t sustain itself if Families were welcomed into the picture. Things will start to get a bit real at that point. The person’s history has to be erased because you can’t create an illusion with a whole 18 years plus of history to factor in.

All that still doesn’t really explain for me, the downright hostility to families at times. Those of you who follow Sara Ryan’s blog will recall LB’s communication plan and how the number one point of the plan excluded the family. Why? What on earth does that hope to achieve? I’ve mentioned before that whilst Steven was at the unit, I was absent from his “patient passport” – his keyworker was listed as his next of kin. Besides being totally wrong (I am still alive) – it was hugely disrespectful. And liable to send Steven into a massive panic about what had happened to his Dad.

It’s all cobblers anyway. The adult social care world would be up shit creek if families stopped doing what they do. I’ve been learning about “deflators” recently. I’m not exactly sure what they are but it seems that many LAs, when working out an individual’s personal budget are looking at the amount of care provided by the family and “deflating” the care plan and budget in accordance with this input. Apparently, this is unlawful but it is now very commonplace. There is a sick irony there too – whilst “deflation” is taking place, the whole adult social care industry continues to massively inflate. The industry goes into inflation, whilst the people they are meant to serve, are subjected to deflation.

I might just have three blank pages in the book under the title of “Families”. That would be the truest picture of how the adult social care world views families.


From → Social Care

  1. Whats in a name? The families have been renamed as a ‘ %deflater group’ .People with Learning disabilities have no value why should their kin ?

  2. The old red brick institutions, where you left your loved one at the gate and didn’t look back, are alive and kicking in the 21st century. We call them ‘services’.

  3. Featherwhiskers permalink

    Historically, I think it is complicated. I think that when the Mental Capacity Act 2005 came in, it did change the perspective for families and local authorities. In children’s services families/ parents are generally very involved unless there are safeguarding issues and the problems occur through transaction into adult social care where families are not seeing as having so much influence. Families find the whole transition incredibly difficult and painful when they suddenly realise that they are no longer the decision makers. Unless parents or families have a Lasting Power of Attorney or a Deputyship through the Court of Protection, then the MCA takes precedence for anyone who is 16 and over, and the social worker will most likely be the decision maker where there are doubts about an individual’s mental capacity to make a particular decision. So in that sense, yes families are sidelined as decision makers. Where they should come into their own is through the consultation process as part of the best interest decision making! I encourage all those that I work with to explore LPA’s and Deputyships, perhaps it shouldn’t be that way but it is. But I also know that not all parents and family members are loving, loyal, committed, approachable and caring – some have different agendas and some kind be downright unpleasant and abusive to their children and disabled adults as well as those working with them. This is where the MCA’s true worth and value can be shown.

    I have no hesitation in saying that both Sara Ryan, LB and Steven and yourself, Mark have been subjected to the worst abuse of the MCA and DoLS and the whole best interest decision making process we have witnessed and that legislation which is meant to protect and enable can be used with such horrendous outcomes. As someone who works within the MCA and DOLS, I can only hope that the up and coming Chester & Cheshire West DoLs appeal and the reviews of both the MCA and DoLs legislation will guide us towards practice which is cooperative and not conflict or finance driven.

    • MCA or not – doesn’t that strike you as odd that as soon as the person hits 18, families become completely sidelined. I’m not even convinced that was the intention of the MCA. I’ve just been down the Deputyship road, and although straightfoward, it wasn’t cheap and there are annual costs too. I guess this is what I meant by the social care industry – our sons and daughters are enormous cash cows for many many people within the system

    • ” not all parents and family members are loving, loyal, committed, approachable and caring – some have different agendas and some kind be downright unpleasant and abusive to their children and disabled adults as well as those working with them. This is where the MCA’s true worth and value can be shown.”

      Why does mistreatment of someone with a learning disability need the MCA, when criminal law is sufficient for everyone else? Abuse is abuse, whoever the perpetrator/victim is.
      And what about the workers in the system who use it for their own agenda – are all social workers denied the right to make decisions, because of those who misuse their authority?

      I am my son’s next of kin. But I’m not his decision maker. Someone with a qualification asked me about him, so they could make the decision.

  4. Can you give the link to Sara Ryan’s blog please?

  5. If only Social Services were honest about it: “Sorry we can`t afford it.” Then you could badger your MP or campaign for change. Perhaps that is the point of the smokescreens and doublespeak. They make it impossible to change the system.

  6. duncfmac permalink

    Think you have the essence of it there Isabella. There is a lot of politics being played out . I have always felt if the local authority were honest about restricted budgets that I could then petition central government but you meet a wall of double speak and complicated systems to cover these deficits in my experience. The elected members of councils also have their allegiances and political agendas. Fact is we live in a country that would rather buy nuclear weapons than properly fund services for those with disabilities.

  7. Mark’s blog has it just right and I don’t think it is much down to finances because if it was, they would be taking notice of families and valuing them because if a person is living with the family and/or the family has input it is much cheaper for the state. I think it’s down to apparent lack of organisation due to apparent: lack of communication, lack of record keeping, philosophy of social services know best (and I think they really believe this), better than the family even though often things are dealt with by managers who don’t know the person or the family. I feel it is a self-perpetuating thing that will not change until social services are radically re-organised and that families are treated like any other UK family and not “families of people with learning difficulties”. But as I said, I think social services genuinely believe that this is for the best and they are doing their best for the person or in their “best interests”.

  8. swanarchie07 permalink

    I look forward to reading your blogs mark but this one has hit a raw nerve for me, my is son is 6 has an undiagnosed genetic condition, complex learning difficulties, epilepsy and cortical visual impairment to name but a few. I feel very nerves that I have entered this world of disability and social care world of services that actually never really listen and are not of much use . I have had a few battles myself one with the obudsaman and I like to think the work I have done is helping shape services for the better, but I know its not and now I hear come 16 /18 I will have no say in my sons future care either. Who do these people think they are that can decided whats best for one loved one. We have cared for them, struggled all there childhood and then they come a long and say we have no choice. People like you mark are who I look up to because you educate me on what is to come and if I can prepare for that now then I need to start why is life so hard for our children to have right and a place in society .

  9. When I said:`If only social workers could be honest and come straight out and say “We can`t afford it” I was giving this as an example of straight talking which would be more helpful in the long run.`

    I understand that the whole system is more complicated than that. It seems that in some way public services are being run down whilst at the same time there is a proliferation of private/charitable/NGO type organisations springing up all over the place who want a piece of the action. So finances have a lot to do with it but in complicated ways. You would think that supporting families to care for their loved ones would be the best and cheapest option wouldn`t you?

  10. Nichola permalink

    Read about the incredible LB and his lovely family. Thanks for the link, Mark. And yes, my heart was ripped out. A vivd account of lives ruined by institutional apathy and individual indifference.

  11. Excellent post Mark. And totally agree
    I’m working for Dimensions as a Family Consultant along with another family carer. We were specifically appointed to the role because we are both family Carers of people with learning disabilities and our aim is to ensure that the organisation is more family friendly and understands where were coming from. We’ve only been in post a year and a half but we do feel we are starting to make a difference. E.g. A family charter, developing training for staff (on issues such as u derstanding the family perspective, historical context and why we sometimes come across as ‘difficult’ e.g its the system that makes us this way,) and we represent families throughout the whole organisation alongside a national Family Forum.
    No where and no one organisation is perfect but I guess at least this is one provider organisation who are really making a commitment to changing historic attitudes of seeing families, at best as a nuscience and ‘difficult and interfering’ or at worst, as people who should ‘back off’ and let them get on with it.
    The more of us that challenge these attitudes the better in my view. I personally feel we ought to lose the ‘professional knows best’ attitude and the parent knows best attitude too (because we dont always although more often than not!) and learn to respect either other, learn from each other and do what we can for the benefit of our kids…we have a long way to go, but were trying!
    P.S Sara is a very good friend of mine, I’ve known her for years and my kids grew up knowing and loving LB, were all devastated by what has happened. I’d be happy to chat and help with your chapter if you’d like it

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