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Working in Partnership With Families

June 8, 2013

In her blog today, Sara Ryan tells of an alarming development in her son’s stay in the unit: he has now been given a “communication plan” and number one objective on the list is: “The family need to phone if they want to come. If LB doesn’t want them to come, staff to suggest to try again on a different day”. Of all the objectives in all the world, isn’t that an odd one to have as number one on a communication care plan list. There’s a hint of hostility in there; there’s more than a hint of dismissiveness. And it leaves no doubt in where the power now lays.

I told Sara a similar story from 2010. When Steven came home after a year away in December 2010, I was unpacking his bags and came across a “patient passport”. It rang a few bells as something that was mentioned as part of a person centred plan around September 2010. However, when i read the passport, I noticed that it had been written in February 2010 – 9 weeks after Steven went away and about the same time that Steven and I were hoodwinked into the “transition home” plan. Worse still, under the heading “next of kin” was the name of Steven’s keyworker at the unit; there was no mention of me or Steven’s mother anywhere in the passport. 9 weeks earlier we had been a family unit; now the unit had wiped us out of Steven’s life.

It was around the same time (February 2010) that I discovered that the social worker had contacted all the managers at the places Steven goes to and told them to only contact her or the unit manager in the future if they had anything to report about Steven. Obviously, up to that point, I had been the contact point. But now, not even was not part of a contact list that included myself and the professionals; I had been wiped off the list completely. I would never have known about this because social services never told me but fortunately, I have great relationships with all the managers at Steven’s various venues and they all contacted me to find out what on earth was going on. I’ve been going to the gym that Steven goes to since 1999 and see the manager and the staff there as mates. Those kind of relationships can’t be wiped out because a social worker deems them inconvenient. It struck me as incredibly arrogant. Not just removing me from the picture but the assumption that they could override all these relationships that I had with the many people in Steven’s life (and my life) for several years.

As in both our cases we’re dealing with adult services, which shows that our sons have been in our lives for at least 18 years. Lots of things have happened in those 18 years and the parents will have a wealth of experience and stories from those 18 years. It is impossible to relate to an outsider the extent of that experience. I was asked by the unit for examples of techniques/scripts I used that helped Steven if he was approaching a meltdown. The honest answer is that I’ve got millions of them but we’d have been there for months if I’d tried to describe a million scripts. We settled on one. A few years earlier, Steven slipped over on the living room floor. He was carrying a strawberry cheesecake at the time, which went flying and landed all over the TV screen, with strawberry juice trickling down the faces of the Proclaimers who were on the TV at that moment. Over the mists of family time, Steven started to find recounting that story very funny, so it became one of the things I would bring up to distract from the potential meltdown. The Unit liked this one and soon every member of staff had been coached in saying: “Mind that cheesecake Steven. Don’t wanna get strawberry sauce all over Craig and Charlie’s face”. It was very odd hearing all these strangers use that old family story but it became known as a “key component in the risk management strategy”.

The reason for writing this post isn’t to shock or to whinge but to try and get some answers. I don’t understand why this approach to families is taken. I often hear the idea of “autonomy” bandied about; is this all part of promoting client autonomy? If it is, then surely it’s an illusion of autonomy. As with Sara, I had to get Steven’s permission to visit him at the unit, as did all visitors and that was presented as a vehicle for Steven to learn about and express choice. But at the same time, he had no choice over who did his bath, what he had for meals, or whether to engage with the household tasks of the unit. Those choices were made for him and were usually made on account of the needs of the service.

Is it about independence? Adult social care seem especially keen to ween their clients away from family life and live more independently (again, another illusion). It’s usually presented as preparing the client for a time when the family aren’t around anymore. I’m not sure if I buy the honesty in that. And again, it denies the real experience of what it’s like to have an adult learning disabled person in the family – the rules (if there are any) that may apply in non learning disabled homes don’t apply here.

I’ve mentioned in my posts about my housing problem how family is looked upon in that realm and it’s remarkably similar. My wife isn’t my partner even though we’re only living apart as it’s in Steven’s best interests; Steven isn’t a member of my family because he is an “independent adult” and now that it looks like he is going to become a tenant, I am not a member of Steven’s family. On the application form, there is no mention of son and father; we’ve become “prospective tenant and his live in carer”. An identical approach to the social care approach.

What is it all about? What is the social theory that underpins these actions? Does it work?

I’d like to know.


From → Social Care

  1. It is so, so scary how parents and families are wiped out of existence. OK there are young people who choose to ‘disown’ their parents, but many young people don’t really leave home until they set up home with somebody else – and even then they return to the family if/when things go wrong. Why does it have to be different for young adults with any form of additional needs, whether learning disabled or other. My son is on autism spectrum and an undergraduate, but we were last to learn he was being evicted from his student accommodation, even thought we are his guarantors. What is going on that devalues important relationships and support networks so readily. So much for systems that proclaim the importance of family values – the irony of it all!

  2. In Scotland at the moment there is a bill being pushed through the Scottish Parliament which would ensure that every child in Scotland from birth to adulthood has a named guardian to oversee the wellbeing of the child. This guardian will be appointed by the authority and parents will have no say in the matter and cannot opt out of the system. The implications for ordinary family life are ominous. It all began with GIRFEC (Getting it Right for Every Child) which initially referred to child protection issues and has been widened to incorporate every child. No longer will parents be the automatic guardians of their children`s wellbeing. England has their Every Child Matters which attempted to push through a similar agenda but so far without success.

    I am mentioning the above facts to suggest that family life is being undermined deliberately in the UK as part of a system of political control. It is not that social workers have convincing social theories to back up their care packages and doublespeak. It is that social workers are more and more acting like agents of State control and this is the `smokescreen` language they are obliged to use to cover up what is really going on.

  3. hi Mark,

    I’d like to email you privately (with helpful advice).

    Can I do that please?

    My email is, what’s yours?

    Best wishes
    Arthur Battram

  4. I agree there appears to be a sinister agenda but they have created a monster [independent/supported living personal assistants providers etc] which needs feeding ,unfortunately the fodder are our family members who have a learning disability.They need the head counts in care settings to maintain the organisational structures .Carer’s are the only voice opposing what local authorities are doing so getting rid of us seems a solution they are actively pursuing .

  5. Liz permalink

    I read your posts regularly and with interests. To some extent you are something of a hero to me – proof that it is possible to fight for our children and win. I have found this post thought provoking and upsetting – because why do we have to fight? We care for our children no matter how difficult and exhausting it is, but from the time they become adults these social theories, constantly changing and shifting, do not make things easier for anyone. Some of them may start off well intentioned and benign, but by the time they filter down to the people who grab at them and put them into action any meaning has been lost.

    We ought to be able to rely on agencies to help us with what we do, But they are not benign, and help seems to take second place to career structure, guidelines,fractured, chaotic planning, budgets, a need for power and control – I don’t know what, exactly, but it shouldn’t be like this. There are good people working within the system, but the system stinks.

    There has been much in the news recently about what happens to young people in care. Last night, there was a programme about those who were “groomed” and abused. Listening to their dreadful stories (and these young people were articulate and could tell their stories – to people who didn’t listen) and then listening to the various spokespersons using the official scripts to justify why they let it happen was depressing. So was listening to another one about why abuse in Care Homes doesn’t get prosecuted. Relatives care and fight and holler – and WE are the problem? These are very bad times to need help from an officialdom that doesn’t, much, care.

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