Crumbs! My weekend blog post about Lenore Care’s plan to build a “40 unit supported living centre” has leapt into my top 10 most read blog posts within five days. Looking at my blog stats, the most read posts are often when I write about care home stories – St Andrews, the bad Hillingdon Mencap Care home report. I’m not sure why this is. Perhaps it is partly because a lot of readers are parents or carers and these stories tap into the worse fears we live with daily.
I’ve had quite a few social media discussions about the content of the post. To be honest, it has felt a real relief that the majority of people have shared my horror that in 2016 such a place would even be considered. The discussions have often broadened out to include large care homes. It’s at this point some of our paths diverge. A few of the professionals commenting have mentioned looking at the “bigger picture” and how a large care unit may be the best option for some people. I think I am able to see bigger pictures but obviously, as a Dad, I’m going to be interested in the smaller picture too. I guess it’s natural but I can’t help as I read the CQC report on Lenore Care’s current home trying to picture the sort of life Steven would have there. And it’s when I look at the smaller picture that I experience gut wrenching pain. Trying to imagine Steven’s life in Lenore Care Home demonstrates why every single joyous moment we share together carries a terrible sadness at the same time. No matter how much we laugh during a shared music session, it ends with me feeling melancholic because I know in my heart how short lived those joyous moments will be. One day, all the things that give Steven’s life meaning and fulfillment will end because the system wouldn’t consider them important.
Whilst I’m talking about pictures, as well as bigger and small pictures, I think we’re often presented with Distorted pictures as well. I cannot bear how the word “independence” has become exploited. The CQC report for the existing Lenore Care Home mentions independence a lot. But what does it mean in the reality of those 23 people’s lives? I’m not there, so I don’t know for sure. What I do know from Steven’s time in the ATU, was how they put a huge emphasis on “increasing independence skills”. In Steven’s care plan at the time, one of these was going to get the milk for the house a couple of times a week. His support workers were given strict instructions not to let him buy anything for himself whilst he was in the shop – the trip was just about buying the milk. Did that make him more independent? Or did it save a member of staff from having to go for the shopping? I think it was the latter and if I’m right, that is a distortion. In the CQC report it talks about residents accessing the community but then the only examples they give are GP or dentist appointments. To me, that’s just basic care dressed up to sound like something valuable is taking place.
I discussed the blog at a conference in Leeds on Monday. Somebody said that by writing about our lives I add a ” great big slab of reality meat onto the bones of social care discourse “. I guess that’s what I mean by the smaller picture.
Last night, I laid in bed and read 10 recent CQC reports of LD care homes. 8 of them had been rated ” good”; 2 of them were rated “requires improvement”. Needless to say, I quickly succombed to the smaller picture and tried to imagine Steven’s current life fitting into any of these environments. I failed pitifully. I started to question what does a ” good” rating mean. The more I read, the more it seemed to be about doing the barest minimum. Feed ’em and clean ’em. Or as Neil Crowther said this morning, “life and limb care”.
I just want to give a few examples of Steven’s present life and see whether any of it would be possible in a care unit:
- Would anyone be able to spare two hours to put the music together for Steven’s Wednesday morning disco? I doubt it.
- Bearing in mind that Steven needs 2:1 support when he goes out, if the home has a staff ratio of 3:23, would he ever get to his water aerobics group? I doubt it
- Would he have access to a computer/tablet, so he could continue with his Massive Good Songs Radio Station? It takes him about 2 hours each week to browse YouTube to find the songs? I doubt it.
- Would someone remember that he likes to chat to Uncle Wayne on the phone every Tuesday, Thursday & Sunday evening and be able to facilitate that call? I doubt it.
- Would he be able to chose which TV shows he watched, or like in the ATU, would he have to negotiate his viewing with all the other residents? Probably the latter.
- Would he be able to eat his meals on his own because he cannot bear being watched as he eats or will he have to have his meals in a communal dining room? Probably the latter.
- If he wants to buy the latest Take That CD, will someone be able to facilitate that? Will he even have the money to buy a CD or will all his money go on care fees?
- His clothes are important to Steven. They don’t get lost or muddled up in the Cowley house. Will he have to get used to his clothes disappearing or wearing other people’s clothes?
- Will anyone be able to spare an hour on Friday to read through the Radio Times with him, so he can see if there are any Mr Bean repeats on? I doubt it.
- Will anyone be able to sit with him for hours at a time to look through his photo albums and listen to his detail packed stories to accompany the pictures? Will anyone consider his 24 photo albums important enough to actually have them all in the home? Probably not.
- Will he ever go on holiday?
- Will he be asked what he wants for Christmas?
- Will he be able to have six bourbon biscuits every other Wednesday?
- Will anyone try to learn the names of all the minor characters in Fawlty Towers?
- If, the person doesn’t learn Mr O Reilly’s name and Steven gets frustrated, will the consequence bevthat he’ll be pinned face down on the floor? Possibly.
We’re not talking about the most exciting, adventurous life in the world here. I’m talking about a life that Steven enjoys, understands and helps him make sense of his world. It includes love. It includes people who are interested in him.
In my small picture of his future life in a care home, he will lose everything I’ve written about in this post. Despite the care home being given a “good” rating.
P.S. The excellent Steve Broach has just used a Human Rights quote about this post. He’s spot on. This is about those “human rights in small places”. I hardly ever read human rights mentioned in a CQC report. They talk about the Mental Capacity Act a lot but as we’ve learned, the MCA counts for nought if the person’s human rights don’t come into the picture (the bigger or smaller picture).
Love, Belief and Balls 
Good for what? or who?
The truth and the vulnerable.
The basic question is, would Steven have any choice ?
No of course he wouldn’t.
Its wasn’t a direct question, but an observation, maybe I should have omitted the question mark.
From 1993 to 1996 my son was at a boarding school for young people with epilepsy.With a dedicated medical director and staff, a huge understanding of epilepsy, and reasonable amounts of money, our sons and daughters were given every sort of independence there could be, plus some. The campus was delightful, the local community co-operated and for Martin it was perfect. Come 18 and it all changes. I hope this isn,t irrelevant, its just that it can work
That’s what you call, real private care, with competition, and control of the services by the parents and service user.
This is what we need, but have the opposite with adult monopoly ‘independent’ cage facilities
Hi Mark my sister lived in a small supported living project and ended up in hospital with depression because apart from family no one bothered with her. A manager(with no experience with people with learning disabilities) closed the communal area so people would live in their apartments. Staff didn’t interact with her and social outings didn’t happen. Now she lives in a nursing home with 20 others and she is so much happier. I have to say the home is owned by a family and not a conglomerate. Think we need to remember that one size doesn’t fit all and the service people get depends so much on good leadership and people who want to be with people.
Hello Amanda, sorry to hear about your sister’s appalling treatment in the ‘supported’ living project – and it’s good to hear she is happier now. But what bugs me is why are people with LD put in nursing homes/hospitals? Many people with LD have medical needs but they are not patients as such. Again, this approach demonstrates the bigotry of low expectations when it comes to people with LD.
appalling – the reason is clear – called budget shuffling – In a nursing home the NHS funds the placement – in supported living the LA funds the placement –
But aren’t they all the same now under the health and social care trusts?
And, working together big time, from top to bottom, via MASH- Multi Agency Safeguarding Hub.
They may very well have a ‘good’ rating but I can’t imagine anyone running those homes would want the life they offer and I can’t imagine any of the professionals that suggest those ‘good’ rated homes would want to live there! Did I read somewhere that people with Learning Disabilities and Autism should have the same expectations in life as any other member of society, or did I imagine it???
Also under the Autism Act it states that people with Autism should live in their own homes in their own communities if that is right for them! Of course, it’s a hard old game getting the LA’s to ever agree that is what’s right, especially if that person has 24hr support needs, but it can be done even if it does take 3 YEARS!!!
Hi Nichola unfortunately my parents were no longer able to care for her and I wasn’t in a position to support her. There was no other alternative. Mind you I was approached by the local Trust a couple of years back about moving her to supported housing 30 minutes away from where she was born and raised. Too far for her to travel to visit our elderly mother, no longer able to just drop in at mine and away from her friends and community. I suspect it would have been a cheaper option. Luckily (shouldn’t have to use that word where someone’s life is concerned) her psychiatrist supported us to keep her where she has been happy
To Shirley Buckley’s post. When you said your son was at a boarding school for young people with epilepsy I’m working in a similar place. I’m glad that it was a good time for your son. The worry is what happens after the young people leave and go into the adult care sector. One of my students leaves in September, the parents have found an ideal place for their needs and after a visit to the place is already mentioning its where they want to go, but already the local authority is trying to persuade the family to go with their choice, not what is liked by the individual. The parents are adamant they want his choice to go through not what is convenient for the local authority, is there anything in the new care act or HRA that I can point them towards to challenge the authority if so needed.
Not a hope. Martin and I have fought the Court of Protection for 10 years and lost. In the past one went on at 18 to the NSE at Chalfont St. Peter, but now that is closed to all except the most disabled. Epilepsy has been written out of Martin’s care plan, he has been held under a DoLs (illegal) since 2008, in a residential care home in Wales. I refer you to Finola Moss’s blogs
This is not legal advice, but merely information. I have to say that, in our litigious, dog eat dog country, although impossible to sue state.
Firstly, have the parents thought of getting their son, to sign a lasting power of attorney for welfare to them, this is easily obtainable, and registrable from the internet.
This, should a court later declare their son incapable, allows them to make decisions, as to where he lives, education, medication etc
But, the problem with it is, the COP, are declaring such POAs invalid, if they find incapacity, on the basis, that he would have been incapable, at the time of signing it, although illegal, as MCA s1 deems all capable, until proven otherwise as prescribed by the Act.
So, as is likely, if parents do not agree their placement,the LA will apply, for a s48 Application in respect to this boy at 18, this will order a capacity assessment, and it is likely he will be deemed incapable, an Official Solicitor, not his parents, although they should apply anyway, will be appointed to act for him in any proceeding.
At 18, this boy alone, and not his parents, can make all his decisions, and I assume he has decided to go to this school.
But, if declared incapable, the court will rubber stamp what the LA decides is in his best interests which will not be to go to that school.
But this should be fought with experts and a fact finding hearing insisted upon.
AND Even without a removal of his decision making ability, you still have the problem of getting the LA/NHS to fund the other school.
The short answer is, once a person is deemed incapable, neither they, nor their parents, can make any decisions for them, they have no rights under MCA, other than to consultation at best.
There is despite the fact, that courts are implementing the Act illegally, and, it is in breach of HRA 98, so you can sue freestanding, or rather the boy can, and /or his parents could for breach of right to privacy and family life and removal of autonomy..
But even if, they do not involve COP, the boy, would have to sue for breach of LA’s statutory duty in not providing this particular school, see education Acts for this,
Under Chronically Sick and Disabled Act 1970, up to 200,000 per year, can be claimed by the disabled, and their families for education, care, and health, this central money, is what I assume, the government are using to pay independent/supported living and their chosen educational placements.
Hope this gives them some ideas, but remember, it is not meant to be relied on as legal advice. and I disclaim all liability for any reliance upon it.
We are, at the mercy of the state, and that’s what they want. We are forced to be captive consumers of any service they want to give us, and we cannot complain about it or have any choice.
There can be no competition between service providers, and, such power, mitigates against a decent service, or life for our children, as their is no choice, or accountability, and it appears profit rules.
UK, is a desperately depressing, totalitarian place, for anyone with any sort of disability.
Conkers – that is the only name I have for you. You may have read my contributions from time to time on this website. I have met Mark at a LBBILL meeting organised by Inclusion London – sister organisation campaigning for disabled peoples rights to inclusion in all aspects of their lives.
I work for the Alliance for Inclusive Education which is an organisation that campaigns for disabled peoples rights to mainstream education. Wondering whether you think you can help us please as someone who is directly working with disabled children and their families. Do you know of families possibly attending the NSE special school or elsewhere who would prefer a mainstream school placement. We would also be keen to find out if parents with children are attending mainstream schools but are being directed to explore special school provision by the LEA? We are keen to make contact .
Please feel free to contact me on 0207 737 6030 for a chat. http://www.allfie.org.uk
Thanks Simone Aspis
Hello Simone sorry not been in touch, been away. I’m not sure if I can help in the sense of children as I work with teenagers/ young adults. Will call you anyway for a chat still if that ok possibly on Friday if that convenient. Sorry for the delay.
Thanks Conkers.
great Conkers can you email me via my ALLFIE email address so that I can give you my home telephone number as I am working from home. I do not want to leave my home tel number on a website in the public sphere.
Finola once again, you are absolutely spot on
Thank you Shirley. I just hope, this young man, gets the school of his choice.
But am not hopeful………… they eventually, will probably, force its closure through lack of funds.
The vulnerable, are now reduced to an investment opportunity.
To Finola , thanks for the information and I understand why you have to add the disclaimer. At the moment the young person in question is going from a campus setting to what is hoped by him and his parents into a house setting not as supported living but as a step towards that. The problem the parents are foreseeing is that the local authority will not fund this. It seems they want to push towards supported living.
To Shirley, I hope Martin gets the result that he wants , but why do you as parents have to keep fighting for what is best for your sons and daughter’s.
That’s the worst part of my job here, seeing somebody leave and worry about what will happen to them will they get the support they want and need. To have a life that they want not what is given to them on a bureaucrat’s whim. I don’t how I can help but will do what I can and if I can help in any way please ask even if its just to make everybody I work with aware of what is happening to your sons and daughters and we need to change this crappy state of affairs.
Conkers just keep ondoing what you are doing – just tell everybody what is happening. Spread the word. And warn everyone that the Mental Capacity Act has been declared not fit for purpose.
Mark – is it OK using your blog for this?
Of course.
Mark, I was looking at your list of what Steven would miss out on in care and wondering what a good care home would look like. There are details which you think would be vital. For example,if it is assumed residents will go to activities outside the centre-and that should be set in stone- are there the staff to allow each resident to do that? That means minimum staffing would have to be not just to run the place but manage outings.
The other things would take a clinical manager eager and willing to sit down with you both and talk about Steven’s routines and how they can be carried out at the new place. That is the first obstacle. The second is enforcing what is agreed on with staff. If some poorly trained apathetic temporary workers come on shift their focus will be to having an easy time of it before the shift ends. Escorting people outside or managing rituals is not an easy time. Therefore they will let those things slide if the manager is not breathing down their necks.
Probably every single ritual and preference can’t be accommodated for every person. You still need staff eager to get to know the person. understand what is important to them and accommodate as much as possible . They need to anticipate upsets and plan how they can be managed not treat each one with suprise and outrage.
You are right, it comes down to affection. If staff like each person and try their best to get to know them, understand them and help them, if they can get it accross to the resident that they are liked and staff want to help make things work, an awful lot flows from that.
I am constantly appalled by workers in learning disability, from the day staff to the CEOs who don’t seem to much like the LD or autistic, and clearly are uneasy around them. Why is that? It seems a minimum requirement at any job interview….
The reality is, that the supported/independent living, has become mainly, an investment opportunity.
It consisted of private, smaller providers, but recently , these have been bought out, by larger providers like Lifeways, Autism Care, Care UK, and, they then have been bought out by the venture capital backed USA players like Cambian.
This is aggressive capitalism.
And, an ever greater profit margin is sought, by finding, the most efficient, cheapest service, hence the building now of larger institutions.
In addition, each time there is a buy out the directors get lump sum pay outs, and at present the Head of Cambian earns over £450,000.
Check out this lot
http://www.healthinvestor.co.uk/ShowArticle.aspx?ID=4027
http://www.healthinvestor.co.uk/ShowArticle.aspx?ID=3371&search=Acadia
http://careindustrynews.co.uk/2015/05/care-uk-confirms-acquisition-of-learning-disability-services-by-lifeways/
This profit is made, because profit margins are huge.
As, on average £3,000- £4,000, is paid per week per resident, often far more, if autistic and/or if residing for ‘treatment’ in the independent living’s specialist hospital, yet the actual care, and support, is cut to the bone, and, provided on an ever increasingly based’ commercially aware’ basis.
Workers, often have to reapply for their jobs, and have been then placed on hourly ie effectively zero hour contracts, on less than the minimum wage, with little, or no holiday, or sick pay.
When Cambian look over Lifeways, Cambian were forced to put up wage to minimum which worried their investors see FT.
.
http://www.chroniclelive.co.uk/news/north-east-news/northumberland-home-staff-could-take-8797415
Support. workers, are now mainly desperate, and itinerant .
And the good care workers are leaving, if they can, because their work is managed and prescribed to the letter, and they are not allowed to linger, or form relationships .
The modus is a large group of ever changing, prescribed efficient tools.
Often, agency staff are used to cover minimum ratio absences
.
One such agency, was closed down last year, by the CQC not because of their care, but, because nearly all workers registered, were illegal immigrants.
This system, does not lend itself to any incentive, or even time, to get to know, the workers’ effectively surrogate children, or, to stay in the job.
And, like the Southern Cross scandal, once venture capital, has ripped as much as it can out of its investment, it is allowed to abandon it .
Entirely agree Sally.
Like Mark, the thought of my son in a place where nobody cares enough about him to help him enjoy his life, is terrifying.
My husband and I are rapidly reaching the age when we soon will have to let our son live somewhere without us. I simply cannot drum up enough trust in any sort of home that I feel will be suitable. It is all down to the compassion of the carers who happen to be on duty. Some have it, some don’t. It is all pot luck what sort of carer you end up with. Will there be enough staff anyway? That is the true reality.
Yep, I agree with all this. Truly, terrifyingly shit.
Why is everyone talking about a group home/accommodation when that may be a recipe for disaster for some people on the autistic spectrum as it could lead to higher anxiety resulting in challenging behaviour (we all know what happens next!) It might just be best for those people with high anxiety to be supported in their own home in their own community being able to access company and friends when they wish!
Exactly. That was the point of my post.
I think it’s a shame the care industry has not grasped that you can provide the sort of care that can include everything on the list. We have been offering self contained flats for 8 years which are still registered as “care home” where individuals live in their own space, in their own community, will staffing levels picked and agreed in advance according to need and want. The difficulty we face, is that we have often been asked to reduce costs sometimes literally six weeks after someone has moved in! With demands for us to use the useless fair (unfair and unrealistic) pricing tool. Our response has always been no unless there is a significant change or reason. We provide what is needed and wanted- any change should be generated by individual assessment not cost reduction (and yes we have reduced costs as well as asked for increases based on what the person needs). Come on social care providers, think outside the box…
Emily
But you must be vulnerable to competing against cheaper contracts ? In my sons LA they take the cheapest tender, and they make no bones about their strategy being based on lowest cost.
They have assessors who know they must reduce needs. In my experience these assessments are brutal, and without access to the law and even then ( now very difficult on legal aid) the kind of support you provide is only a dream.
This LA would not permit agencies/service providers to determine levels of support.
Yes I know and it’s depressing, but most providers are also not qualified to understand need and rely heavily on local teams and LAs which ends up in the ‘contracts department’ (?? What do they know about need??). I suppose we are fortunate in that we offer important step down back into community from hospital (where the individuals have usually had little chance to experience their community), and due to levels of needs, generic providers are not used. We have experienced the whole “tender” process which is soleless and leaves me cold as a parent. The thought of bidding for a person is rather immoral. We have had great support from families though where they have made their voices heard and challenged some financial decisions, but it must be exhausting fighting all the time!
Emily
It is. And the access to legal aid has been shrunk even further this year. I have been trying to access another Public Law solicitor since July without success. The form filling and the evidence required, even for letters only support, is a nightmare.
But without us having a solicitor to challenge, my sons LA routinely cuts his care back to below danger level. I dread what will happen next review, and what is happening now to those without parents in the area.
Even, if you did get Legal Aid, and a good solicitor, the chances of you getting anywhere with a threat of judicial review and/ or carrying this out is little,
We cannot enforce UK law, against the state, so they can act in breach of their statutory duty to give support, and ours, and our children’s human rights.
This is the reality they have deliberately created.
Even with a solicitor and a barrister,,and paying well over the odds, you haven’t a chance. With legal aid, the soilcitor and barrister will dance to the Court’s tune. The only chance is as litigant in person, which has improved in the last couple of years. The judges usually regard you as an annoyance, but at least you can say what YOU want in Court (and then the Judge puts a penal notice on you) Finola did you ever hear of a good legal aid solicitor????? Who would take on the Mental Capacity Act, which is not fit for purpose ha ha bloody ha
In fairness, Steven had a great legal aid lawyer, who took on the council’s abuse of the mental capacity act and got him home.
Mark I know – this is what makes it so hard, Why aren”t they all following your precedent. But then the MCA was the shining light, now it is not fit for purpose. Long before your case I tried every legal aid firm there was in London – nothing. I wanted the Bournewood team, Richard Gordon was into criminal law I think, and no no one else would listen. You were unbelievably lucky -which you deserve, dont think I begrudge you, but that was another world.
Mark I am coming back to you yet again – Ive just read Lucy Series on your case – just having her involved was so positive. Martin has been unlawfully detained for over 8 years, and resort to the CoP has been refused him by the Court itself. So has the request for an IMCA.