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Transparent Housing

Me and the support workers often travel pass the old Cowley house during the week. It’s been obvious since February that the house wasn’t being demolished, which was the reason we were given by both the council and the housing association last year when they told us we had to move. A few weeks back I noticed some scaffolding had gone up circling the house and a few days later, I saw a roofer removing all the tiles. I thought it was odd as surely if the house was being knocked down, they wouldn’t remove the roof tiles first. Then we noticed new roof tiles being laid. Then a new front door being fitted. Workmen have been in and out all week and this morning, one of the support workers drove round there and saw that the place has been completely renovated. New kitchen units and appliances; the lounge has been redecorated and carpeted; the back garden has been laid to lawn. He obviously couldn’t see upstairs but it’s safe to assume that the bedrooms and bathroom has had a complete makeover too.

When I started to smell a rat, I sent off a Freedom of Information request to the council, asking what the plans for the house and street were and what had happened to their plans to demolish the entire road. I got a reply yesterday. No answer obviously – they’re experts of wriggling out of giving a straight answer.

The old house was owned by a private individual. He owns several in the street. He leased the house to a housing association, who in turn, leased it to the council to be used as temporary homeless accommodation.  The LA’s response to my FOI is that they cannot disclose any details because that would be breaking the confidentiality of the owner. There’s no point in doing the same with the Housing Association because they are a charity and don’t fall under FOI rules.

Obviously, the owner has decided to sell the house or try and gain a bigger income by renting it out privately. I accept that it is his property and he is perfectly entitled to do that.

What leaves a nasty taste in my mouth is that we were lied to. On that very first visit by the Housing Association manager last February, he told us that we would need to be out by the end of the year as the whole road was being demolished to make way for a redevelopment. Throughout all the homeless and housing applications that followed with the council, they confirmed that story. We were given no cause to question it.

I feel torn because there is no way we would want to move back there. Steven is so settled in his new house and loves both the house and the area. But he went through several months of real emotional distress both in the couple of months before the move and then up until Christmas in the new house. And it will take me years to save back up the fortune I spent in getting the new house ready for Steven.

The timing of this discovery is lousy. The damp problem got sorted but recently there have been large stains appearing on the hall wall next to the bathroom and inside the door of Steven’s room. It has also spread behind Steven’s wardrobe. It’s not damp but there is clearly a problem (leakage?) with the shower. It’s more than a coincidence that these waist high stains run right the way round the flat directly on the other side of the shower. We had to have some of the tiles replaced a couple of months ago but there looks to be an even greater problem with the whole shower. The council are liable to repair it but I’ll have to pay for Steven’s room and the hall to be redecorated once the problem is solved.

There is no point in pursuing the fact that we were lied to by everybody for nine months. Transparency is dead and buried in Hillingdon.

Don’t Mention Human Rights

I felt very proud last week to be contacted by Liberty and asked if I would put my name to a campaign that puts pressure on all political parties to address Human Rights in their election manifestos. The HRA saved Steven back in 2010 and its importance to all of us, especially the disabled, cannot be downplayed.

The campaign began yesterday. It would be fantastic if every reader of this blog got behind it and added their name. The petition page is here:

https://www.change.org/p/all-party-leaders-promise-to-protect-our-human-rights-act-and-echr-membership-in-your-election-manifestos

It’s not a very good time to be human. It’s not a good time to mention our rights. Last week, I wrote a post about my disabled friend being banned from our local cafe. In a thread discussing the matter, someone mentioned her human rights. It prompted the reply, “What about my right to eat my meal without having my stomach turned by the eating habits of a spas?” It’s difficult to know where to begin, unpicking the anger and resentment in that statement. But it’s familiar. And popular. And so much of our political discourse is around the cultivation of malice.

It serves our political masters well not to define us as human. If we were defined as such, we might feel a connectedness and that cannot be encouraged. We’re now primarily defined as consumers and what model to upgrade our phone contract to is more likely to trouble us than 3000+ learning disabled people being detained in ATUs. For years, we have been pitted against each other by the framing of strivers Vs skivers; hard working families; the just about managing; the strong & the stable. We can become quite lost, trying to work out what category we fit into, what category we want to shoehorn our neighbour into and which category will make us feel better about ourselves. Trouble is, in bitter, resentful times I can only feel good about myself at the expense of others. I’m okay – you’re not okay. If I’m feeling so disenfranchised, why the bloody hell should you have any rights?

We don’t help ourselves. We can go from bragging to brooding on the turn of a sixpence. One minute my ego rules: the next I can be consumed with self pity. Yes, these are all aspects of being human but there’s also a lot more to being human that is now seen as old fashioned, even laughable.

The trouble that the HRA has always had is that it applies to all humans. It applies to hard working me and the neighbour on benefits with the flat screen TV. It applies to my disabled son and the guy in the cafe who was angry with his fellow disabled diner. It applies to Steven’s white English carer and his black Nigerian carer. The evidence is that we don’t like that. Some of us are more human than others. And for some of us, being human doesn’t even come into it. Can we accept that the HRA can help the Hillsborough families get justice AND help the Syrian refugee stay in the UK because of his Article 8 Rights?

I’m banging on. I’ll stop. I don’t often ask favours but if anyone feels it’s okay to be human, please sign the petition. If nothing else, it may prevent another Steven being taken 100s of miles from his home.

Positive Love Support

Was yesterday National Positive Behaviour Support Day? Or has it been the whole week? The reason that I ask is that my social media timelines have been choc-a-bloc of adverts for PBS, blogs on the subject, Youtube clips. You name it – PBS has been omnipresent.

It’s no secret that I struggle with PBS. Obviously it goes back to Steven’s time in the Unit and their zealous approach to the topic. Every new initiative was presented like a cure for cancer and woe betide you if you questioned the validity of such a model. We had the introduction of the alarm clock that would be set for a specific time to let Steven know when he could do something he had been asking for. One Saturday morning, he woke up asking to watch a Mr Bean DVD and they set the alarm for four hours hence. After two hours, one of the residents threw the clock and the shift leader reset it for another four hours. After asking at 8pm, Steven eventually got to see Mr Bean at 2pm, at precisely the moment I turned up for a weekly visit. Then there was the time, the experts decided to scrap all of Steven’s coping mechanisms and introduce new ones. At the gym, his routine before he started training was to touch each of the photos of the gym members on the wall. That was stopped and they printed off some pictures of the gym equipment Steven was about to use. We then had another risk assessment and support plan to refocus Steven from the members’ photos to the equipment photos. I could give scores of examples of these approaches.

The big problem was that the Unit were totally convinced that their’s was the only way that worked. And when the Court psychologist wrote his report, the first paragraph included the shocking phrase, “Minimal attention has been given to Steven’s autism”. If you are going to deny an important part of who he is, any strategy is likely to fall flat on its face.

The other major issue was the Unit steadfastly refused to acknowledge any part they might be playing in the behaviour that they were so committed to correcting. In the many paged reports of Steven’s escapes from the Unit, there isn’t one single consideration given to what they staff were or weren’t doing to enable the escape. There were no positive behaviour support plans to enable Steven’s request to have a male worker attend to his personal care, so when a female staff tried to apply his excema cream to his groin, all hell broke lose and Steven’s distress was used as further evidence to keep him in the Unit. The whole PBS was a shambles.

I know what will happen when I post this blog. It happens every time I write about Positive Behaviour Support. I will be inundated with messages from the PBS crowd telling me that I’ve got it all wrong and that I shouldn’t dismiss a whole model on the basis of one bad experience. I can actually. Sometimes, an experience is so wrong and so traumatic that to try and go through the experience again to get a more favourable outcome can be too much to bare.

I remember an early lesson I learned in my counselling career. I had been doing telephone assessments all day and my job after doing them was to speak to the manager to match the new clients up with counsellors who had available spaces. I’d spent over 90 minutes on a particularly tricky assessment and towards the end of the conversation, the client mentioned that she had been to our agency before, about four years previously and asked me not to match her up with the previous counsellor. I knew who she was talking about and it was a counsellor who favoured a rigid psychodynamic approach. The client told me how scarred she’d been by the earlier sessions and it had taken all her courage to make today’s call. I admired her greatly and was hoping that I would be able to see her myself. However, when I spoke to the manager, I was told to get back to her and inform her that the previous counsellor was the only one available and that working through the issues from the previous counselling would be an invaluable experience for her. There was no room for debate or discussion. That was the what I had to tell her. The follow up phone call was ghastly and not unsurprisingly, she declined to proceed.

Yesterday, I suggested to Steven that we did a music DVD session. It was a regular on our weekly schedule for over 10 years but since we moved, Steven has dropped it from his weekly routine. He was very up for the idea and we had a great two hours playing a vast repertoire from The Beautiful South, through to Barry Mainlow via Steps. We made no reference to the positive behaviour support plan at all. In fact, I’m not sure where they are anymore.

I favour love. Positive Love Support. It goes a long way and gets a lot done.

Squeeze ‘Em In

Yesterday I wrote about my friend’s horrible experience in one of our local cafes where she was banned for basically being disabled. I can’t get the unfairness of this out of my head. I keep thinking of the time Steven was banned from Virgin Active after complaints from three women from the water aerobics group. Whether it is someone dribbling onto their food or someone squealing with excitement under the ice cold water bucket shower, we’re living in empathy lite times. Despite the law on reasonable adjustments, it is always likely that a business will take the side of the non disabled customer and let the disabled person carry the can for others’ ignorance or prejudice.

I got a further sinking feeling today. I cam across two links for two new supported living units currently being earmarked for learning disabled people.

http://www.gazette-news.co.uk/news/15246997.Charity_for_people_with_learning_and_physical_disabilities_gets_green_light_for_48_homes/

https://www.equityhousing.co.uk/equity-housing-group-works-in-partnership-to-deliver-new-apartments-at-heys-court

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Willow Park Group assisted living apartments 2.JPG.gallery

The first picture is a 26 unit (one bedroom flats) which has been remodeled from a sheltered housing scheme to supported living for learning disabled people.

The second picture is of a 48 unit complex run by Willow Park Charity in Clacton. The charity are hoping that the sale of 21 bungalows to non disabled people that they are building at the front of the complex will fund the building of the supported living flats.

In a similar vein, I came past our old house today. You may remember that we had to move last October as we were told that the entire road was being demolished to make way for a new development. The demolition was meant to happen in February but it has become clear that there has been a change of plan (or we were lied to all along). Scaffolding went up about six weeks ago and the first job was to replace the roof tiles. Today, it appeared that our house is being converted into two flats. It wasn’t a large house, so the flats will be minuscule. Just ripe for a learning disabled person.

Places like the developments in Clacton and Stockport are not new. Most towns have them now. I’ve written at length about the 40 unit place near us. Opinion is very divided on them. Some of the comments on social media today are that the Clacton one is a very good idea and will present a choice for a learning disabled person who wants to live in that kind of environment. It’s hard to argue with that if that is what the person really wants. I find it unfortunate that the counter argument when anyone expresses dismay at that sort of places is often life at its bleakest. Recently a person whose opinion I value a lot argued for ATUS  as their only alternative was prison. Today I saw an argument that the Clacton development was good as it would prevent people being homeless. I don’t understand that position. It certainly closes down any discussion. But surely there has to be more on offer than ATUs, Prison or Homelessness.

My view is slightly less charitable. It seems obvious to me that these kind of developments are so popular at the moment because they lend themselves to much cheaper care costs once people are actually inside them. I think it is safe to assume that once the 46 units in Clacton are filled, the residents support and budgets will be pooled. The residents will be in their nightclothes by 7pm. They might go out window shopping in groups of four if staffing levels allow. One thing I’m sure of is that we will not see 46 people, each with their own support team and personal budgets, being able to live a life of their choosing. It will be service centred rather than person centred.

What has this got to do with the story of the cafe ban? A good friend was telling me earlier that since her learning disabled son moved into his own place two months ago, one neighbour has put the tenancy at risk with constant complaints about him. We had that situation before Christmas where Steven was facing an ASBO after the people in the flat upstairs complained to the council about his noise. I can’t help wondering if part of the popularity of the Willow Park project is it contains all those pesky noisy, dribbling disabled people in one place. 46 sights for sore eyes kept out of sight for the comfort of others.

My heart sinks because these places have their roots in the institutional model rather than the nice home model. They are institutions with a window box. Where else would 46 people with a defining characteristic be housed together. 46 Diabetics? 46 Redheads?

I think the big problem we’ve got is how to present to the wider public that there may be better options than 46 units. I’m not sure that the empathy or the interest is there. as things stand, these places are win wins for so many people. Even, if I admit grudgingly, a win win for some of the residents.

I just know that I wouldn’t like to live in Willow Park. I’m sure that Steven wouldn’t want to live in Willow Park. And I’m pretty sure that if push came to the shove, Gary Guiver, the planning manager at Tendring Council wouldn’t want to live there either.

Off The Menu

I’ve been eating in Poppiandys in Uxbridge since the early 1970s. It used to be called just Poppins but about 15 years ago, someone decided it could do with an Italian sounding makeover. It’s the last of a dying breed. The sort of eatery my Auntie Rose would have heartily approved of – a place where you could have a “nice sit down with a pot of tea and a toasted teacake”. Uxbridge has got plenty of coffee shops but they’re not the same. Auntie Rose would have been confused by the eclectic clientele and the array of coffees. And not for her, a McDonalds or a Pizza Hut. Eating out demanded that your food be served on a plate with cutlery. And she could never pronounce “pizza”, referring to the dish like the famous leaning tower.

Poppins has been a backdrop to my life. In the early days, it was a treat with my mum after a green line bus ride from Southall to Uxbridge. At the end of the 70s it was one of our Mod hangouts – a place to be seen rather than to eat. I could make a banana longboat last an hour as I constantly checked in the mirror tiles how sharp I looked in my two tone suit. In the early 90s it was the start of the journey my wife and I would take up to the Royal Free hospital for IVF treatment. We’d pop into Poppins for a breakfast before the stressful day ahead. In more recent times, I would go there for my tea on a Tuesday between the 10am to 8pm shift I did at the counselling charity. I was in there just two weeks ago having a Knickerbocker Glory whilst waiting for the watch repair shop to open.

Sadly, no more. Last week, the mum of one of Steven’s Mencap pool friends posted on Facebook the humiliating story of how her daughter was asked to leave the cafe. She can be a bit of a noisy, messy eater and it seems like other customers complained. The manager told her support workers to leave and not to bring her back again. The Facebook thread attracted many comments and I was shocked how common an experience this was. Another parent told exactly the same story. A classroom assistant told how three of her pupils had been banned. By the end of the thread, one was left with a nasty taste in one’s mouth. A place I’ve known and loved for almost 50 years was no longer the same. The strawberry tarts had become tarnished.

In the thread, people were suggesting having a quiet word with the manager. “He needs educating”. Of course he does and a quiet word may be appropriate. But the damage has been done by then. And even if the manager has a Damascus moment, would you really want to go back?

I think of the places where Steven has been banned over the years: Virgin Active, the observation tower at Heathrow, the kid’s club at the caravan park in Clacton. Each time, someone in charge has interpreted Steven’s noisy enjoyment as a discomfort for other people. Other’s enjoyment is being spoiled by Steven’s joy. And there really is no answer to it. Education? That only might work if the person is open to being educated. But by that time, they are feeling defensive because you are calling out the king has got no clothes on, so “lessons being learned” becomes unlikely. My response in these situations is pretty crap. I try to give an “am I bovvered” impression whilst holding the moral high ground. It never works and my embarrassment becomes as acute as the person giving out the ban.

I might have popped into Poppins later. I’ve got some errands to do and a Range Choice would have rounded off my excursion nicely. Instead I’ll get a bus going in the opposite direction and go to The Griddle Diner instead. It hasn’t got the personal history but it has got five choices of breakfast. And it’s never too late to start a new history.

Because when you’re not welcome, you’re not welcome. I might be but Steven probably wouldn’t be. And that means I’m not either.

Plan Z – The Wheat & The Chaff

A couple of weeks ago, I wrote about putting my “Death Plan” in place. I did an initial post on the subject – https://markneary1dotcom1.wordpress.com/2017/04/02/plan-z/

To be honest it has been an unbearable task. Every section of the plan I’ve written has brought about howls of anguish as it brings home all the mechanisms that need to be in place for Steven to be able to continue living in his own home in the future. Never before, have I considered something that feels so important but so futile at the same time.

To be honest, there is no reason whatsoever why Steven can’t continue to live his life as he would want to. The detail I have included in the Plan is not unreasonable and is well within the Care Team’s capability. The big question mark is whether the State will allow it to happen.

I’ve nearly finished it and one thing that struck me this morning was how I have weighted the different sections of the Plan. Obviously, there are key sections like: how are the finances managed; what do I order each week from Tesco; all the contact details of the various organisations involved in Steven’s life. I’ve found though, that I’ve given equal weight to trying to replicate the more personal – the things that Steven does with me; the things that he talks to me about. Who will do those things and how? Will he still be able to have those conversations and with who?

As an example, I’ve thought about the two compilation tapes we do every weekend. They may appear quite random to an outsider but there is some method in the madness. We may do a whole tape with songs that have people’s names in the title (Barbara Ann, Valerie, Billy Don’t Be A Hero). We may do a tape with artists whose name begins with the same letter (Steps, Slade, Sonny & Cher). I’ve typed them all up! 70 categories! Steven being Steven, all our CDs sit in alphabetical order but is too much of a tall order to expect someone to take on this job every Saturday and Sunday.

Then there is the conversations. I’ve done a pictorial family tree, so that someone less acquainted can see where everyone fits into Steven’s history. I’ve named the names and the relationships but I can’t possibly include the 100s of stories about them that Steven chats to me about. A conversation between two people with a shared history is a very different conversation to two strangers having a conversation about one of their histories.

My priorities, and fears for the future, showed up markedly in my list of “Important Contact Phone Numbers”. This is how the list was ordered: 1) Support Workers, 2) Family & friends, 3) Medical, 4) Legal People, 5) Press and Media, 6) Advocates, 7) Official Organisations (DWP, OPG etc), 8) Places Steven goes to, 9) Tradespeople. I guess numbers 4,5 and 6 reveal that I expect the future may be bumpy and they could have a fight on their hands.

It struck me earlier how far we have moved on since the days of the Positive Behaviour Support input into our lives. I was scrolling my Facebook timeline and someone had started a thread, asking for help about dealing with her son’s meltdowns. I realised that I hadn’t included anything in the Plan about managing difficult behaviour. Not because we don’t get it anymore; more because we can take it in our stride. Five years ago, my living room table was covered in Lever Arch folders with 100s of pages of PBS risk assessments and risk management plans in them. Those days are long gone, both in the need for such documents and the priority we give them.

Someone asked me on Facebook the other day if I would post the final plan to help other people planning their son’s/daughter’s future following their death. A number of people chipped into the thread encouraging me to do just that. I’m not sure that I can. It is too intensely personal for wholesale sharing. And social media being social media, it is bound to attract people wanting to give advice, or people telling me I’ve done something wrong, or even just general feedback. I’m not tough enough for that. But when I have completed the whole thing, I will post a very basic template; it just won’t include any of the deeply personal information. I’m not convinced anyway that people don’t know where to start putting a Death Plan together. I’ve been putting it off for years, not because I haven’t known how to do it but because the whole process is so painful and upsetting. That’s the barrier that needs to be cleared before one can start and an acceptance that it is going to be one of the most difficult projects one has ever had to do.

I know that I will probably have to update the Death Plan several times in the years between now and my actual demise but it could just become an annual job – a task for those wet Spring bank holidays. The one good thing about completing a Death Plan is it allows you to get on with the business of living.

And that’s what we’re going to do. It’s Sunday, so it’s compilation tape today. And today we will be doing Songs with Place names in the title.

What’s the chances we’ll be singing Letter From America at the tops of our voices later?

The Independence Void

I’ve hit a bit of a brick wall in funding Steven’s growing call for independence.

Since he moved, he’s been asking for more time by himself (without me) and we’ve tried really hard to respect that. It feels like a good, positive move.

However, there always needs to be somebody around so I’ve had to ask the support workers to carry out additional shifts. Basically, it works out to an extra 6 hours per week plus 2 additional nightshifts. The workers have been brilliant and offered to do the extra hours at a lower rate because they could also see that this was a good thing for Steven. The Personal Budget is so tightly calculated and controlled that there is no spare money at all to cover these extra hours, so since December I have been paying the additional £100 myself. I’ve nearly exhausted my savings, so it is going to be impossible to maintain this expense. But to not do so will compromise Steven’s autonomy.

In December I claimed Carers Allowance for the first time. I thought this would help towards the extra support money I was having to pay out. Ironically, although I now have extra hours free during the week, my paid work has decreased significantly over the past year. Clients have finished and I don’t have the access to new ones like I used to. For some reason, I got awarded Carers allowance from 3rd October to 15th November (even though I hadn’t asked for it) but have had nothing since. We have fortnightly telephone conversations and they have sent me 9 forms to complete about my income but no more money has been forthcoming. I have no idea whether there will be an ongoing entitlement.

I hadn’t mentioned the extra hours to social services for a simple reason – fear. I know they have banged on about Steven’s independence since 2008 but they don’t really mean it. Not in the true sense anyway. They talk about it as a cover for cutting budgets. I feared that if I asked for any extra hours in the Personal Budget they would decide that it would be cheaper to provide Steven’s care in one of their dreadful supported living flats, or a residential placement. However, when we had the community DoLS assessment back in March, I thought I’d broach the subject with the social worker. She sounded very open and promised to speak to her managers.

Today, I received an email on the subject. Nothing has been agreed. They want more information before making a decision. They’ve asked for records of the money I’ve paid out and the time sheets covering the new shifts. This is awkward. Because the new shifts don’t form part of their normal contract, they haven’t been including them on the timesheet. I can see that there is a problem before we’ve even got out of the starting blocks. I guess I’m asking them to trust and believe me and the system doesn’t work that way. I guess it all boils down to me wanting to live in our home, whilst the State just sees our home as an extension of their office.

I wrote a blog a couple of years ago about how the system attacks families. One of the most common ways is by doing absolutely nothing at all. Putting off making a decision. Keeping the family in limbo for months on end. Asking endless questions to deter the claimant. I’ve come very close on several occasions recently to saying to both the Carers Allowance people and social services – “Don’t bother. It’s not worth the hassle”.

Trouble is, if I don’t pursue this, we’ll have to go back to the old support arrangements and Steven loses that independence, or autonomy, that he’s striven so hard to achieve.