June 2013 – Love, Belief and Balls

Situation Vacant: Category Manager for Towel Rails

June 25, 2013August 6, 2013 marknearyLeave a comment

I think I’m going slightly mad.

Thia morning I had an unexpected but welcome two hours all to myself. I could have got on and done the P35 for the direct payments annual tax return but I couldn’t sum up the will. Instead, I set myself a mission. A completely pointless mission that has been bugging me since Saturday.

On my “Reform, Reform, Reform” post I mentioned that my local council have had a major management restructure. The very top people have gone but at the same time a whole new charabanc of managers have pulled up and they’ve been given the titles “Category Managers”. Nobody that I’ve asked has the first clue what a category manager does. Time to find out and I had two hours to save the world (or my sanity).

It seems that the basic idea for Category management started in America and began in large department stores. Products were grouped together on the basis of similarity and managers were appointed to oversee a specific product. Strangely, the example I saw was about a large bathroom superstore. So, I guess there was a Category manager for taps; a category manager for grouting and perhaps a category manager for loofahs. And that’s it – the derivation of a concept that has been adopted by a social care department as an innovative management structure.

And this is why I struggle to hold on to my sanity. Day Centres round my way are closing at a breathneck pace. I learned at the weekend of the fifth person from Steven’s year group at school to be permanently moved to a care home out of borough. The emphasis on hubs is throwing up the most unlikely of activity bedfellows (swimming and behaviour management at the same hub). But worst, it was announced on Panorama the other day that Hillingdon has no children’s homes that it uses that are rated above “adequate”.

I can see that none of that stuff penetrates the teflon coated world of an enormous tier of category managers.

In a decent world, someone would come along and shatter the bubble by appointing a Category Manager for Immoral Shite.

Countdown to 16th August

June 21, 2013 markneary1 Comment

I’ve known since last September about us becoming homeless on 16th August. It has been incredibly stressful, in its way as stressful as the events of 2010 when Steven was away, and my health has suffered badly as a result. However, something happened today that has made the knowledge from last September suddenly become very real.

I was at work this afternoon and took a call from the estate agents. The landlady (as is her right) wants new tenants in the flat from the moment we move out and has arranged for the first prospective new tenants to come and view the flat tomorrow morning. Tomorrow morning! Not an awful lot of time to get my head around this development. This is now very real.

The really difficult thing is that up to now I have managed to shield Steven from all the stress – I haven’t told him anything about the eviction and what might happen next. Steven, like many autistic people, finds the idea of “might” very anxiety provoking. And as this is linked to Steven’s greatest anxiety anyway since his illegal detention about where he is living and with whom, I have avoided bringing the subject up until I have something specific to report. I think that once I know where we’ll actually be living, he will cope with the announcement that “Steven Neary and Mark Neary are going to live in a new house in Uxbridge? Cowley? Wherever? A statement that we are leaving the Uxbridge house but don’t where we’ll be living will activate the most terrible anxiety in him.

With Hillingdon it’s like 2010 all over again. I’m sure “turning a deaf ear” must be on their official crest. Since the meeting six weeks ago where I was promised that Steven would be allocated a social tenancy, I have heard nothing. They haven’t put in writing the discussion of the meeting and they haven’t responded to any of my emails or telephone messages since.

Justice Jackson found in 2011 that they lied to me and Steven throughout the whole year; first with the fake transition home plan and then after that cat was out of the bag, they lied about their application to the Court of Protection.

It’s understandable, I think, that I am extremely nervous that I have been lied to again and that come 16th August, there won’t be a place for us to move to.

Fair Do’s

June 15, 2013 markneary8 Comments

Yesterday, I was contacted by a long standing member of the Get Steven Home group. She was looking for advice and also asked whether I would write about the latest development in her son’s care package. She was in despair and seriously considering giving up caring for her son at home because financially it has become impossible. She asked to remain anonymous, so I’ll call her Sue and her son, Gary. This week she received two letters from her local authority. The first one, received on Monday, was headed: “Fairer Access to Care Services” and informed her of changes to Gary’s care package, following the “award” of a personal budget. The second letter, three days later, was headed: “Fairer Charging Policy” and informed her that Gary would now be expected to make a financial contribution to the previously free of charge, outreach services. You can probably guess where this story is heading…….

For the past two years, Gary, who is 27, has received a care package of 20 hours per week support. The council have directly commissioned an agency to provide the support, so Sue has never been involved in the finances of the package, although she knows that the agency charge an hourly rate of £17.25 for their services. A total weekly cost of £345. The 20 hour’s support was assessed to cover the following:

* 1 hour of personal care first thing in the morning, five days a week.
* 1 to 1 support to go with Gary to the gym for 1 1/2 hours, twice a week.
* The remaining 10 hours was meant to cover 1 to 1 support to enable Gary to access a college course, 1 1/2 days a week.

One problem that Sue has always had with the current package is that the agency could never find staff willing to work a one hour shift to cover the personal care; they insisted on two hours per day. To meet this demand of the provider, Sue had to use some hours from elsewhere, so it meant that Gary could only attend one of the identified college courses. The bottom line is that the support package was used entirely to meet the agency’s fees; the course fees, gym membership, travel and the support worker’s meals had to come from Sue or Gary’s pocket.

So, where do Gary and Sue stand now? Having been reassesed under the fairer access to care services, the support with personal care has suddenly disappeared off the care plan; the social worker wants Sue to encourage Gary to be more independent (that old chestnut again) and take charge of his own personal care. However, he is still assessed as needing the 1 to 1 support to attend college and the gym and to meet that need, the LA have allocated Gary a personal budget of £136.50 per week. A reduction of £208.50 from the previous budget. Sue is expected to find a provider herself, so if she sticks with the current agency and the staff that Gary is comfortable with, she hs the funds to purchase just 8 hours of support. 20 hours has now been reduced to 8 through a combination of a dodgy reassessment and the unknown algorithm the LA uses for its resource allocation system. What all this means for Gary is that he’ll either have to drop his college course or stop going to the gym; he cannot afford both.

But that’s not the end of it. The second letter informed Sue that under the fairer charging policy, Gary is now expected to pay £38.27 (!) per week towards the cost of his £136.50 per week care package. Sue is dismayed. Where on earth are they going to get this money from? I haven’t mentioned the bedroom tax they’ve had to pay since April because Gary is an adult and not taken into account as part of Sue’s household. The only possible solution is to give up the gym membership (and also save on the travel to the gym). As she is now in a position of being able to afford less care, Sue is now needed at home more to provide the care herself. That means that she will have to give up her job where she works seven hours a week. And Gary will get out of the house for about five hours per week to attend college. Thank goodness though, that all this fairer.

The despicable spin of the “fairer” language leaves the disabled and their carers in a very dark place. The package that Gary was receving has become decimated but apparently was less “fair” than the current package. The implication is that if the new package is “fairer”, he was getting away with something with the previous one. Was it unfair that Gary had a life where he could attend college and the gym twice a week and that Sue could work for 7 hours per week. It must have been because now, they’re being told that their package (life?) is fairer.

How can Sue and Gary be helped? They can appeal. They can ask to go before Panel. They may even be able to challenge this through the courts. Whatever, it all feeds the system even more and the fundamental inhumanity of it all can be glossed over.

It stinks. It’s hateful. And it’s as putrid as unexpectedly finding a pile of vomit on your eiderdown.

Working in Partnership With Families

June 8, 2013 markneary5 Comments

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.