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.




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.

A Ninja Plays Powerball

I’ve been way out of my comfort zone for the last couple of weeks. I’m trying to write a novel and plotting, sub-plotting, devilish denouements aren’t my usual style. But I’m intrigued by the process and fascinated by the way the book keeps turning into something quite different than I originally planned.

I think several things have come together to prompt this book. I’ve been feeling a bleak despair over the lack of ATU action. I’m not sure what it is going to take for people with learning disabilities to be seen as human and for their human rights to be respected. Loud, emotional campaigning doesn’t seem to work. I’ve got grave doubts that polite, partnership working campaign’s can fare any better. Solitary petition led campaigns appear to play right into the Powerfuls’ hands. I keep thinking back to the suggestion from a couple of years ago that what is needed is a troop of Ninjas.

At the same time, I’m still doing my family history and have been reading a lot about the mid 1800s. One thing I keep finding is that there were an awful lot of philanthropists at that time. We don’t tend to hear about them anymore. But a Ninja philanthropist would be a godsend to all those people trapped in ATUs.

The other thing that keeps coming up to drive the book is a dream I had last week. I’ve never had a dream like this one before. I am with a group of people in a museum browsing the display cabinets. I am not engaged. A giant screen is showing footage from the 1800s. I am not engaged. Then the film on the screen changes to a match at Southall Football Club in 1979 and I remember that I was at the game. I move closer to the screen and I suddenly realise that I can climb into the screen. I am inside and do a circuit of the pitch, arriving behind the goal just as we score. I come face to face with 20 year old me. We can see each other but there is an invisible barrier between us. My 20 year old self isn’t the slightest bit interested in me and the footage evaporates as I hear the words, “You can’t go back”.

The book?

27 year old Ben is approaching his second anniversary in an ATU. He went away for a week as his father arranged his mother’s funeral. The father has tried several campaign’s to get Ben home but nothing has worked. On his way home from visiting Ben, the father stops at a motorway service station. There is one other customer, who the father recognises as Ben’s childhood hero – Spartacus from the TV programme, Gladiators. After the series finished, Spartacus became a multi millionaire building gyms across the Mediterranean but for the last ten years has become a recluse. The father tells his story and Spartacus decides to don his famous lycra costume, one last time and help get Ben out of the ATU.

I think I’d like it to be like an old road movie and the relationship of two middle aged men as they learn that they can’t go back and try to work out their place in 2017.

I’d like to think they’ll succeed but if nothing else, I’ll make my therapist earn her corn as she entangles a dream turned into a novel.

The Approved Support Providers List

Another day. Another social care “choice and flexibility” scam.

Yesterday, I received the minutes of the latest local “Carer Experience Forum”. This is the regular gathering, organised by the council, where carers are invited to be told about the council’s latest wheeze to make the carers life better. This time it looks like only one item was on the agenda – the launch of the Approved Support Providers iniative.

A bit of background. For many years the council have awarded a contract to a local disability charity to provide support with all things direct payments. The council refuse to offer any advice or help on direct payments – they just signpost you to the charity. The council are excellent at not giving support. When I agreed to take on a Personal Budget, they diligently refused to answer any of my questions which left me feeling like I was on a major motorway with neither a car or a map.

However, I love our local charity. They found us our first support worker 15 years ago and he’s still with us. They spent hours with me at the start of the personal budget, teaching me how to run a payroll. Last year, I had a mental block over the tax return and they came round and held my hand as I sorted it out. Just last week they helped me as I was trying to organise self employed contracts for all the support workers.

The contract expires in July and the council have decided that the carers need more choice and flexibility in how they get their direct payment support. The council won’t be renewing the contract with DASH: in fact they won’t be awarding a contract to anyone. Instead, they will be issuing every carer with an Approved Support Providers list and the carer can chose a provider from the list and negotiate their own contract with them for whatever support they need. The carer then goes back to the council and tells them what sort of contract they’ve negotiated. The council then decides how much they will contribute towards your contract and allocate a sum of money in your personal budget to cover the cost of your contract with the approved support provider.

At the end of the minutes there is a Q&A and 24 questions are asked. Most of the questions are along the lines of: “I’m happy with DASH. Why do I have to change?” or, “Why can’t you do this for us?” Every question is met with the same robotic answer – “This is about the budget holder having more choice and flexibility in the most cost effective way for the council”.

Whilst reading the minutes, I truly felt the attendees pain and bemusement. Yet another burden in the name of choice and flexibility. As much as I like DASH, I couldn’t give a monkeys who provides the support but I don’t want to waste any more precious energy finding and negotiating that support myself. Just provide the fucking support and I’ll take what’s offered. You can call it choice and flexibility but really it’s about desperate penny pinching. And the end result is that the personal budget holder has gained another outsourcing maze to add to the many others he has to navigate in the name of Personalisation.

My immediate reaction is to go, “Sod it. I haven’t the time or inclination to go support provider negotiating, I’ll go without”. I’m sure lots of other carers will think and do the same.

And that’s precisely what the council want you to do.

Personal Budgets are totally inaccessible for many learning disabled people who haven’t got a carer to manage it for them. This new choice and flexible scheme is another nail in the coffin of accessibility.