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?
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.
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”.
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.
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.
Following on from last week’s news that St Andrews are planning on taking on a cohort of mentally ill Bermudians as an exciting “new source of income”, today we learned that they have been taking mentally ill and learning disabled children from Ireland for many years. One part of this outrage is that the Irish authorities didn’t start keeping records of this transportation until late 2014, so they have no idea what became of those children prior to that date. How many were there? How many are still there? Who is looking into the care and treatment they’re receiving? We’ll never know. Another story in the history of lost children.
I’m not sure why but this is reminding me of the latest research I’ve been doing into my family history. I’ve now been able to flesh out quite a bit about the life of my great, great, great grandfather, William Worley. He was born in 1801 in Seer Green, which was basically nothing more than a very large farm. Like most men in the village, he started working as a labourer on the farm from the age of 11 and that was to be his lot, as far as his working life would go. He married Rachel in 1824 and in the same year, had his first son, John. John was an imbecile. It appears that it was quite a shock to this newly wed couple in their early twenties because they didn’t have another child for 5 years and when they did, their second child died at 6 months old. Then between 1831 and 1839, they had six more children in quick succession. Rachel died during childbirth of the 8th child in 1839. One of the reasons, I like William Worley is that he named his 8th child Rachel, after his late 33 year old wife.
Two years later, the 1841 Census, sees the family already dispersing. William is living in a 1 bedroom cottage with baby Rachel and 3 more of his children. Five year old George is living with Rachel’s mother. My great great grandfather, William junior, has been taken in by the local grocer. And John, the imbecile, is now 17 and living in a cottage with 7 other people who don’t appear to be related. But he is still in Seer Green.
Later that year, William is arrested for burglary and is sentenced to 10 years imprisonment. I’m not sure how he fell into crime but the reasons seem pretty obvious to me. Needless to say, his incarceration led to further dispersement of the family. John was admitted in 1843 to the recently opened Northampton Lunatic Asylum (now St Andrews) and died there in 1853, aged 29.
When William was discharged from prison, two other of his children had died, including Rachel at the age of 12. The other 4 had been scattered around the country. Most of the children died relatively young. In fact, when William died aged 72, he’d outlived all but two of his own children. After prison, William spent a couple of years in lodgings but by 1855 he was in the Amersham workhouse and stayed there until his death in 1873. It’s very difficult reading the Census details of a workhouse where so many people were crammed into one room. In the 1861 Census, next to William (next bed?) is 18 year old, George Barnett. George is classified as an imbecile. I can’t find any other Barnett’s in the record, so presumably George was there on his own, away from his family. In the ultimate irony, George’s place of birth is listed as Northampton. Whilst John Worley went one way, George Barnett went the other.
Bermuda, Ireland, Northampton, Seer Green. 200 years.
Our history. Our present.
It’s an odd sort of space at the moment. Not sad. Not depressing. I can’t quite find the adjective.
My sister and I had that conversation the other night. That one. The one I’ve been putting off for years. What plans are in place for Steven following my death? There I’ve said it now. It’s on record. You heard it. Time to start planning, or tending to my affairs as they used to call it.
I’m not unduly bothered about my death. I’m quite intrigued my next incarnational encounter with Whistler’s Mother. We had the bloodbath at the French Revolution, both suffered through the Irish potato famine and in more recent times had a face off across the floor in the Court of Protection. We have unfinished karma, so we’re bound to run across each other again. My friend and I were discussing how you become invisible as you get older; nobody notices you walking down the street or in a restaurant. Perhaps death is the final invisibility.
What got me and my sister onto the subject was the dreadful run of stories this week of people suddenly being carted off to ATUs. Four online friends have faced this horror in the past few days. Their family member isn’t ill. They don’t need assessment or treatment. For various reasons, unrelated to the person being detained, the support packages have broken down. Or, crucial parts of the support package that have been promised, haven’t transpired, leaving a crisis situation. Whilst alive, this is the fear that every family with a learning disabled member faces daily. It keeps me awake often. It has affected my health, physical and mental. A change of council policy, a new social worker, a reframing of a support need and BANG, everything you know and rely on, gets thrown up in the air.
Death certainly throws everything up in the air. I’m not even trying to tend to the emotional preparation for that. The important thing is have written down, every aspect of Steven’s care. Chose a “management team” for Steven’s ongoing care – it is too much to ask of one person. Not because of Steven but whoever takes on the task will be entering a bureaucratic kingdom from hell.
I’ve made a small start. I’ve been in touch with the bank to make sure the Personal Budget account and Steven’s account don’t get frozen upon my death. That has to carry on as normal. I’ve started to write a “Best Interests” statement, going into great depth why Steven must be allowed to continue living in his own home. But will it be listened to? I’ve began several lists: the things I buy in the weekly shop; the order of songs on Steven’s holiday cassette; the names of people in the 26 photo albums.
The real truth is that I could live another 10 years and spend the whole time doing this preparation.
And it won’t be enough.
Another day. Another Twitter debate about why thousands of people are trapped in ATUs. Another debate where professionals who should know better pull out their trump card – “Lack of local expertise and skills” to shut down the real truth – lack of will and vested interests – being exposed.
I’m too fed up with that tired, offensive excuse being trotted out with depressing regularity. The implication stinks – the person is too complicated and challenging to be living in their own home and an institution is the best place for them. Engaging in that conversation perpetuates the fantasy, so let’s stop doing it.
Instead, let me tell you a few things that have happened in Cowley over the past fortnight and the input of Steven’s “unskilled, inexpert support team”.
1. Brought and fitted new living room curtains after a meltdown led to the slat blinds lying in a crumpled heap on the floor.
2. Taught Steven what the African lyrics in Going Back To My Roots mean.
3. Sat for an hour on Steven’s bed, reassuring him when he was upset and anxious about my late return from Scunthorpe.
4. Extended a shift by 45 minutes (unpaid) to go to the shop to buy some Crumbled ham.
5. Upon delivery of his new CD, learned and discussed the difference between Laurence Fox and Mr James Hathaway.
6. Took a pair of pyjamas with a hole in the crutch, home to repair.
7. Noticed the small sweet shop was busy and waited outside singing Shania Twain songs until the shop cleared.
8. Discovered a TV channel that plays 1980s music videos 24/7.
9. Mowed the back lawn.
10. Rearranged Steven’s schedule when they realised Take That were appearing on the Ant & Dec show.
That’s the sort of skilled expertise that’s developed when you have human beings interested in each other.