Home Sweet Institution

Last week at The Small Places blog, Lucy Series wrote a brilliant post about the challenges on people’s human rights if they are living in an institutional setting. How the rights and choices, that those of us not living in care homes take for granted, go out of the window, no matter how benign or enlightened the culture of the care home may be.

It made me think about Steven’s time at the positive behaviour unit in 2010 and how much of his usual life had to be compromised. he was expected to be tolerant of a whole set of rules that simply don’t apply at home; not because I don’t set rules but because they are not needed in the home environment. And those rules required Steven to be empathic to other residents, to the staff, to the ideologies of the local authority and as we know, autism and empathy don’t normally go together. By the way, this post isn’t meant to be a criticism of the unit; it’s just an examination of how much a person gives up when they enter a care home. I reject though the comparison that other s have made between life in a care home with the communal living, with a group of students living together. As someone wrote on Twitter, a student is not going to have their lecturer enter their flat and tell them they can’t drink, can’t smoke or have sex.

Back to the positive behaviour unit and the first thing that both Steven and I found difficult was that the resident’s guests weren’t allowed in their rooms. The first time I visited Steven there he led me off to his room but the next day I received an email from the manager to say that it was prohibited. He gave two reasons: preserving the privacy of the other residents and ensuring my safety. I never understood that; we were going to Steven’s room, not the other resident’s. And as to my safety, that seemed to stem from their risk averse culture and bore no relation to the relationship I have with Steven. So, not being allowed to share quality, private time in his room, my two hourly visits took place in the dining room. I used to visit on a saturday afternoon and tried to stick to Steven’s favourite routine from a Saturday afternoon when he’s at home, which is a music session. So, I used to prepare a C90 tape and take along Steven’s ghetto blaster for a familiar music session. Except that we were frequently joined by other residents, interested in what was going on. Or we’d be interrupted by staff coming to get the evening meal out of the freezer. Or by staff coming in to check on my safety! Each interruption would make Steven more agitated and I grew to loathe those visits. In every other relationship in my life, if I want to spend two private hours with that person, I can pretty much guarantee we could achieve that. And yet, I could never get it ,with the most important in my life for just two hours a week because of the unit’s rules and the needs of approximately twelve other people.

Another very problematic area during the year in the unit was bathtimes (I can’t bear to use that institutional phrase “personal care”). Steven made it very clear that he was uncomfortable with women supervising his bathtime; reasonable for an awkward young man. Bear in mind that this job including someone applying his excema cream to his private parts and it becomes even more understandable. However, Steven was at the mercy of the shift rotas and on many occasions there were only females on duty. Inevitably, this led to several of the incidents of “challenging behaviour” that the unit meticulously logged and which they used as their rationale for keeping him away from home. The solution was simple; send him home or respect his wishes. I am a man. His support workers at home are all male. But I was told that he had to accept a multi gender staff team. Can you imagine the outcry if any of the female readers of this blog expressed their discomfort about a man being in their bathroom, only to be told that it was okay for that man to apply soothing lotion to their breasts? No, of course, you can’t imagine it because it would never happen. person centred care goes down the plughole.

There were a lot of other examples. Here are a few:

  • How do you explain to an autistic man who has watched Countdown every week day for the past fifteen years that he can only watch it once every four days because he has to take into account the viewing requirements of four other residents (and the staff – I remember Wimbledon fortnight when all the residents were in their rooms but all the staff were glued to the TV). Oh, and he can’t have  a TV in his room because bedrooms  are out-of-bounds during the day.
  • How do you explain to a young man in 2010 that he has no computer access and he has to forgo his three times a week Youtube session. This is complicated for the young autistic man as he can see there are three computers in the office that seem to be working fine. At home, if he suddenly decides he wants to watch the Fine Young Cannibals singing Johnny Come Home, he can because he has his own computer. Having a computer that is only used for spreadsheets about client behaviour patterns isn’t something that is part of his normal life and he doesn’t really get it.
  • How do you explain to a young autistic man who in the past 15 years has been able to eat a whole bag of crisps once a day all to himself that he has to empty that one bag of crisps evenly into four bowls and be shared with the other residents? Whilst on the subject of food, I don’t buy foods that I don’t like. Or if I go into a restaurant and there’s nothing on the menu I like, I walk straight out again. Unfortunately, in an institution, if you don’t like the one dish on the menu, you go hungry.

I bought Steven a mobile phone whilst he was away but unfortunately, he couldn’t get the hang of selecting from the four numbers I put in it. So, if he wanted to speak to me, his mother, his uncle, or his friend, he had to ask and wait for a phone or a member of staff to be free. And even then, he wasn’t allowed in the office, so had to conduct a conversation in the main lounge in front of all the residents and staff.

I wrote in “Get Steven Home” about Steven’s person centred plan. People who don’t live in institutions don’t have person centred plans; they have the freedom to be as person centred as they like and god forbid, not even have a plan in their lives. Steven came up with six things for his person centred wish list:

  1. “Want to live in the Uxbridge house forever and ever”.
  2. “Want to open my Christmas presents in the Uxbridge house on Christmas Day”.
  3. “Want to go on holiday to Somerset”.
  4. “Want to have sausage and bacon in Rip’s cafe”.
  5. “Want to go to Hampton outdoors swimming pool”.
  6. “Want to see Toy Story 3 at the cinema”.

All six things were refused. because they were passed through an institutional funnel. I’ll never forget Justice Peter Jackson questioning the safeguarding manager about number (3): “So, you can’t go on holiday if you’re under a DoL? Really? Good heavens! I’m shocked!”.

Needless to say, since Steven has been home we’ve done all six: you can express yourself and get your needs met without a person centred plan. Who’d have thought!

You might ask who was bothered by all this; me or Steven? Well, obviously by the tone of this post it bothered me (and still does). But, I witnessed Steven’s agitation when our brief, valuable two-hour Take That session was repeatedly interrupted. I’ve read the umpteen incident reports, so have seen how problematic it was for him having a female do his bath. And since Steven has been home, he has never once chosen the Alan Titchmarch show on ITV1 over Countdown!

When I lived in a communal house, it was bedlam most of the time. Sometimes we were mature enough to negotiate. And I could stand my corner over expressing my wishes; I didn’t have someone telling me that I lacked capacity to make a decision about what I wanted. If my fellow tenants wanted lasagne, I’d go out to the Wimpey Bar. I had total autonomy over who scrubbed my bollocks.

I’ve read this post back and clearly there are things that I am still angry about. But this isn’t a rant post; I hope it’s a post that adds a bit of flesh to the experience of institutional living. And perhaps illustrates that dead normal human rights are terribly difficult to uphold in an institution.


Just Supposing……..

I received a direct message on Facebook earlier from someone who has read the recent blogs and asked me: “Just supposing Hillingdon have got it terribly wrong again. The appeal commission could decide that you were entitled to housing benefit all along but by that time, you will be evicted from your home. What will happen to Hillingdon after a second unlawful act in two years…..”

I’ve just typed up the chronology of my housing benefit history for my solicitor and thought I’d post it here. As you can see, since the 12th September, there have been several occasions where my right to appeal has been jeopardized, now resulting in the probability of being evicted before an appeal is even heard.


Chronology of Housing Benefit Claim


July 2009 Informed by social worker that it is   impossible to sustain support package due to wife’s mental health state.   Unless something changes, Steven could be removed from my care.
August 2009 I find flat in Uxbridge and check with   Housing Benefit department about eligibility to claim before signing tenancy   agreement. Given the all clear by HB department. Social worker writes letter   to HB to support the move.
16th August 2009 Steven and I move into flat in Uxbridge
August 2009 to September 2012 Housing Benefit paid continuously.   Several reassessments of claim during this period, including discretionary   award in September 2011.
28th August 2012 I ask for HB claim to be reassessed as   my income has decreased, following change in employment.
12th September 2012 Meet with HB officer. Discuss my   income details. Am informed that HB is terminated due to situation with   marital home. Formal termination letter issued by Hillingdon
14th September 2012 Director of Housing states on radio   programme that she has reinstated the HB “whilst ongoing discussions take   place”. I receive email from social care manager confirming the reinstatement   and advising me to ignore the termination letter of 12th
18th September 2012 I meet with managers from HB, Housing   & Social Care. I wish to challenge decision to terminate HB but focus of   meeting on options open to me after the termination.
25th September 2012 I submit social security   commissioner’s decision to support my claim. No acknowledgement
26th September 2012 I submit formal appeal against   decision to terminate HB. No acknowledgement.
4th October 2012 Receive the minutes of the meeting of   12th September. Appeal not acknowledged.
5th October to 12th   November 2012 No communication.
13th November 2012 Attend meeting with HB manager, Social   care manager & Deputy director of Housing. Given formal letter that HB is   terminated from 19th November. Told that my previous appeal not   valid until today. Delay and lack of communication since 4th   October because Hillingdon seeking legal advice.
14th November 2012 Attend meeting with Housing manager   & social care manager. Am presented with several options, all based on   there being no HB


As to the question what will happen to Hillingdon – the answer is probably nothing whatsoever!


Getting Steven Away

On Wednesday, I attended the second meeting to look at our housing options with two senior managers from Hillingdon; one from housing and one from social care. (cost to me over the two days £120 in lost earnings). surprisingly, the option of social housing that the deputy director of housing had suggested the day before, had suddenly disappeared off the table. That despite Hillingdon giving a statement to the BBC an hour before the meeting saying that the social housing option could be the most favourable option.

Three options were presented:

1. We move back to the marital home with no rental liability. The consequences of that though (which the social care manager acknowledged may happen) is that social services would immediately raise a safeguarding adults alert on Steven and probably within a short space of time, would remove Steven from my care. That is exactly the same position we were in back in 2009 which prompted us leaving the family home. Also, it would be impossible to sustain a care package in that environment.

2. I meet the full rental liability myself. I’d love to be able to do that and get away from the benefits system and trying to increase my income isn’t for the want of trying. However, the stumbling block with this option is that if I did find more work, I don’t have the support in place to enable me to work more hours. Social services have made it very clear that they will not increase the support package.

3. Hillingdon will make up the shortfall in my rent from their discretionary homeless fund. This would be a very temporary arrangement and is conditional. The condition is that once we have been to the Court of Protection (looking like the end of January now) and I am appointed Steven’s welfare deputy, Hillingdon would expect me to transfer the tenancy into Steven’s name. As he wouldn’t be entitled to housing benefit either, by virtue of his damages, he would have to pay the full rental liability out of his damages. I’m not convinced that is legally sound but even if it is, it is morally and ethically vile. Obviously, I would still pay as much as I can towards the rent but his damages would still disappear very quickly.

I have asked Steven’s legal team to consider three things (and if anyone reading this knows the answers, please get in touch because I would be very grateful):

1. Is Hillingdon’s decision to stop my housing benefit legally correct? I have appealed but unfortunately because of how Hillingdon have orchestrated it, time is against us, so we’ll be served an eviction notice before the appeal is heard.

2. Is there a way of protecting Steven’s damages, so he doesn’t end up having to pay the full rent?

3. Is it legal for me to be appointed welfare deputy and then the next day, transfer my tenancy into Steven’s name and lumbering him with a £950 a month rental liability?

Here’s the news. I think the best thing to do is to move right away from Hillingdon. This relentless harassment has continued for five years now and even if this latest issue gets sorted favourably, there will be something else around the corner. There always is. I’ve been looking into the option of shared ownership and could use a large chunk of Steven’s damages to really secure his accommodation for the future. I’ve been looking at Kent as I have some friends there already and there is even the possibility that a couple of Steven’s support workers would still be able to work with him. There are other options I can consider but perhaps now is the time, having got Steven home, to get him away from Hillingdon for good.


This is a quick update as it’s another full on day and I need to get some rest as well.

Last night I ended up in A&E. I’m sure it was the stress of the day. It’s funny how being wired up to a heart monitor clears the brain. And a very odd thing happened. One of the nurses was asking me what had happened and it turned out she’d read my book. She made a very good observation: “Funny how on both times you’ve asked for help from Hillingdon, it’s turned into a nightmare”.

She was right. But it’s helped me decide on the approach today when I meet the housing officer to discuss the step by step process of the eviction and rehousing.

Hillingdon have never understood families and the importance of family life (if anything they are quite hostile towards it), so why bother trying to discuss on those terms. There is no point in getting into a moral, humanitarian, ethical discussion about the situation either – they don’t work on that level. The only way this will work is to work on the lowest common denominator – their duty of care towards Steven.

So, take me out of the picture; I am just a live in  carer – I am as relevant as one of the support workers. The focus has to be on Steven’s place of residence.

That leaves a simple choice. Stay here in our flat or move to social housing. As Steven will be expected to pay the full rent as they will exclude him from HB because of his damages, what will work best for Steven. So, it boils down to what will preserve his compensation the longer, and that will be social housing.

I want to thank all the people who have messaged me on this blog, Twitter and facebook since yesterday with advice and suggestions on people who can intervene. I really do appreciate it. I’m too tired and unwell at the moment to act on those suggestions but I will get on to it as soon as I feel better.


Eviction Notice

It’s been an awful day and I do feel like I’m reaching the end of my fighting capacity (There’s a thought – perhaps if you’re engaged in dealings with your local authority, you should have a fighting capacity assessment!). This morning I received the shocking news about my Housing Benefit. This afternoon, I passed out – I’m sure it was the stress of the latest bombshell, but it was scary nonetheless.

Today I was called to meet the people from the housing department about my housing benefit claim. To recap, for people who haven’t read the earlier blogs on the subject, I have been getting Housing benefit continuously since we moved to this flat in 2009. In July, I asked for my claim to be reassessed as my income had gone down a fair bit since I went out on my own in my own practice. I went along for a meeting, which I thought was to be about the reassessment, only to be told that they had looked at my claim again and that I was no longer entitled to HB. The reason they gave was that I jointly own the home that Steven’s unwell mother lives in and their position is that I have access to the funds of that property. I don’t – his mother is very ill and cannot sell the property. That has always been the case since 2009 and I checked out that very point before we took up this tenancy. I was informed at the first meeting that they were stopping the Housing Benefit with immediate effect. The following day I got in touch with all the press contacts I made during the court case in 2011 and The Times and the local paper ran the story. I was also invited onto Radio London and was interviewed by Paul Ross. Astonishingly, mid interview, Linda Saunders, the director of Housing came on air and said that she had personally intervened and was reinstating the benefit whilst further discussions took place. That was two months ago and the benefit has remained paid since. I went to one meeting, the week after the radio interview, and was given 2 options to think about. I had already taken legal advice, which was that we had a very good case, so not to consider the other options and appeal the decision to stop the HB. I submitted the appeal on 26th September. I have heard nothing until today.

It felt like Groundhog Day. It came out in court that all the discussions between the LA and me over Steven’s care were “window dressing”, whilst they sought legal advice and got their own legal case in order (as we know, that failed dismally). The same thing happened today. The housing officer admitted that the delay of two months has been whilst they sought legal advice. Not as Linda Saunders promised, to have further discussions. They were confident that their decision is legally sound and so are stopping the housing benefit again from 19th November. I said that I have no confidence in their ability to get a legal matter correct after 2010 and wanted to pursue the appeal. Amazingly, they said that my appeal is only valid from today as their formal decision was notified to me today. And the formal decision only states that I am not entitled as “you have capital in excess of £16000”. If I want a fuller explanation, I have to request it and that slows down the process even more. That means I will have to go through the charade of an internal appeal (which of course will get nowhere) and then hopefully, to the social security commission. It will take a long time, and in the meantime, I don’t have the money to pay the full rent. So, even if the appeal is successful, by then it will be too late – we will already be evicted.

That led us to the other options. The council have no duty to rehouse me as a single man; but they do have a duty towards Steven. However, they won’t do anything until we have been evicted from our flat. So, next rent day, I will just have to pay what I can afford and let the landlady serve an eviction notice. Leaving aside, the deep shame of that as I’ve had a very good relationship with my landlady and have never once missed a payment of rent, they cannot start a rehousing of Steven until eviction is served.

The new property, probably a council flat, will have to be in Steven’s name. That throws up two problems. Firstly, I would have to act on his behalf as he lacks capacity to manage a tenancy and we are still waiting for the court of protection date for my welfare deputyship application. I checked with the lawyer this morning to make sure that the application we have submitted will cover me having to oversee the tenancy on his behalf. The second kick in the balls is that Steven wouldn’t qualify for housing benefit either because of his compensation. I said that we haven’t received it yet and that the court will hold on to it until I become the welfare deputy, but their opinion is that because they have released the funds, it is available to Steven. So, despite the assurances from Linda Saunders and regardless of whether it was their intention, they will indirectly get the money back that the court ordered them to pay as compensation for their illegal act. The rent will probably be significantly cheaper than the private rent I pay at the moment, but the outcome is still the same; whether Steven or I are the tenant, neither of us will get any help towards the rent. The place will have to be furnished, so another chunk of his compensation will have to go on that. The poor sod is likely to have very little left of his damages by this time next year. I’ve had to completely revise my ideas that the damages would pay for him to have some good holidays over the next few years.

Of course, Steven’s best interests didn’t enter into the conversation once; neither did the recommendations of the court experts.

So, add today’s news with the situation from yesterday’s blog about the long-term sickness of the direct payment worker and how do I fund his sick pay and a replacement worker. Throw into the pot, the fact that we are still waiting for the damages payout 18 months after the court case and it all feels very bleak right now.

No final joke today – I think the joke is on me.


Flexibility, My Arse

Reasons why I don’t like “flexible” direct payments and being an employer. Part 76.

This is going to sound a terribly unempathic post. My excuse is that it’s not about the person who has triggered off the problem but the system that forces the situation on me.

Our main direct payment worker has gone long-term sick; he currently works 30.5 hours each week. Because he is an employee, he is entitled to sick pay. Having been self-employed since 1999, I have forgotten what it’s like to have an automatic entitlement to sick pay – I’ve got used to the fact that if I don’t work, I don’t get paid. But as an employee, sick pay is part of the contract drawn up by the council, so I have to honour that.

The council’s view is that I should budget out of the hourly rate to cover sick pay. But surely that doesn’t apply if someone is long term sick. Out of an hourly rate of £10.50, I would have to pay less than the minimum wage to cover the sick pay plus a cover worker. The alternative is that I take time off work to cover the absent shifts but as I said above, I wouldn’t have any income and I can’t imagine qualifying for any benefit under those circumstances – I’m not sick. I can’t sign on as I’m fit for work and not unemployed. ATOS would have a field day with a claim like that.

For a long time, I’ve wanted to transfer the whole support package over to the care agency that provides the rest of Steven’s support. The council won’t agree to that, purely on financial grounds. As I said, the direct payment hourly rate is £10.50 per hour; the agency rate is £16.85 per hour. It would cost the council nearly 50% more and they’ll never go for that. And neither will the support staff. Out of the £10.50 I receive from the LA, I can pay them £9 per hour (which still covers holiday pay and a small amount of sick pay). Although the agency receives £16.85 from the council, their pay their employees, on average, £7.50 per hour. They’re not interested in negotiating that figure up; it would bite into their 100% profit margin. And the direct payment workers are hardly likely to be keen to transfer their hours the agency and earn £1.50 per hour less.

I’m meant to be going to a mate’s wedding in two week’s time. As it is in Kent, it will mean at least one, probably two nights away. I’m really looking forward to it because another good friend lives nearby, so I was planning to kill two birds with one stone and spend some time with my two closest friends. I have been saving up my earnings as it will mean losing two days pay. I have also saved up some support hours to cover the extra support that will be needed at home whilst I’m away. Now I will have to cancel as there is no way I can afford to pay someone their week’s sick pay; cover for the sick person’s normal shifts and cover for the extra two shifts I would need to cover my absence. My mate, the bridegroom , and I have a running joke about our “bitterness” levels. I can well and truly trump him with this one!

Caring is fucking hard. Normal day-to-day stuff takes up an enormous amount of energy. I’m not interested in running a staff; I don’t have the time or the energy for that. Has the nature of being a carer become so complicated and involved now that opting out of being an employer, would actually mean forgoing a care package. Carers have enough on their plate – we don’t want to have the hassle of being employers as well.


The Red Tape Challenge (Or Cutting The Ties to Humanity)

This week, the department of Health began its consultation process for its “Red Tape Challenge” in health and social care. You can read about it here (http://www.dh.gov.uk/health/2012/11/red-tape-challenge/). As it is legally bound to do, the DofH is consulting; inviting comments from interested parties on the areas that it has identified as “red tape”. It’s a clever, nasty move couching the proposed cuts in those terms – who in the right mind would argue against cutting bureaucratic red tape.

But as they say, the devil is the detail (and there’s plenty of devilment in this document). And by heck, there is a lot of detail to get through in the paper, much of it over my head. One area that hits me on the head obviously is the Deprivation of Liberty safeguards; a clunky, flawed piece of legislation but until a better alternative is in place, the only means a vulnerable person has of challenging being unlawfully deprived of their liberty by the authorities. Safeguards are lifelines – not pesky red tape.

Two crucial aspects of the safeguards are to enable the person deprived of their liberty to have a relevant person’s representative (RPR), who is usually a family member or carer. who can help the voice of the detained person be heard and challenge the DoL if it’s against their wishes. Secondly, the person is entitled to an Independent Mental capacity Advocate (IMCA) who can provide professional backing to the detained person. Without these two interventions, the vulnerable person is quite alone and completely reliant on the supervisory body acting in their best interests and getting it right without any other concealed agenda. And as we know, they do sometimes get it terribly wrong. The Department of Health has decided that the RPR and the IMCA roles are red tape and can be cut out. No professional advocacy. No nuisance relative challenging the professional view. No access to justice if an injustice has occurred.

To personalise for a moment, without my voice and eventually the voice of the IMCA, Steven would have ended up in a care home over 200 miles from his home (“facing a life in public care that he does not want or does not need”). He would have been left to rot there, losing contact with family and friends and all the things that are important to him and make his quality of life. His detainment was an illegal one based on flawed best interests assessments and duplicitous actions from the LA. But none of that matters to the DoH because it is just red tape and has to be cut away.

When I started writing this blog, I had the idea of throwing everything into it; a mish mash of stuff that interested me. Over the months though, it seems to have become about two things: understanding the fake language that underpins most of our “care” discourse and exposing the hidden agendas behind the spin. I realise that is a grandiose statement but I do really believe it is the biggest challenge of the day. I work as a counsellor and I hear on a daily basis how much our psychological well-being is damaged by this hellish nonsense; how much our sense of our reality is skewed by the outward presentation.

So it is more than likely that behind the spin of the Red Tape Challenge is our two old friends: money and power. The money one is obvious; on a basic level IMCA’s cost money but they are only the starting point. Think of the efficiency savings that can be made on the legal aid bill (which the detained person is automatically entitled to by the way). But RPRs don’t cost a single penny, although like the IMCA. they can trigger off the costly court process. Where I live, there are at least 24 very senior managers within the social care hierarchy but who is going to suggest that there might be a bit of red tape there that could be cut.

No RPR. No IMCA. The committed professionals within the field who might want to challenge the challenge but are buggared because they are in the system. What chance does the vulnerable person have with all those people out of the picture.

We must fight this. Families, legal professionals, social care workers must come together and make sure that the precious few human rights that a vulnerable person has aren’t savaged any further.

This is a call to arms! Who’s in?