Is my son a lucrative asset?
Posted by
Josie Barnshaw
on 13th August 2010
at 09:11
Hi Mollie
Welcome to the forum :)
I will need to do some research into this myself as I dont anything about it, but hopefully someone else will pop in with who will be of more help to you. In the meantime I will go see what I can source in the way of short and long term care for those at the more "profound" end of the spectrum.
What area do you live in?
Josie - Community Champion
Posted by
Elena - former Community Manager
on 13th August 2010
at 09:56
Welcome to Talk about Austim, Mollie! No, I wasn't aware...but it doesn't surprise me. Health care is profitable industry even in a society where it's meant to be free.
I would love to see some information about this shift to portfolio companies, have you found anything on it? Please feel welcome to share any resources or links so that all of us can be better informed here.
This reminds me a lot of a book I read by George Monbiot called Captive State - The Corporate Takeover of Britiain.
You're right that it could be too late before too long, so if you do start a petition or anything please let us know.
Lastly, I agree that yes there should be a watchdog!
Very curious whether anyone else here has been aware of this.
Posted by
Elena - former Community Manager
on 13th August 2010
at 10:10
By the way, Mollie, as your post wasn't pertaining to Member Q&As I have moved it to the General Autism section - hope that's ok.
Posted by
damo73
on 13th August 2010
at 10:39
Hello Mollie,
Thanks for highlighting this issue - my son is 7 and has a more passive nature - I have never used any kind of respite care and would do anything to keep him out of institutional care. I can see that for some families though, that things can be more difficult to cope with.
I am skeptical of the efficacy of care and the knowledge/awareness etc. of healthcare staff - yet if a care home is managed privately, I would run a mile from anywhere with such an approach to care as the one outlined by you. Unfortunately in a capitalist world EVERYTHING can be turned into economic assets, debts, costs etc. (like research which talks of the 'cost' of autism - highly offensive 'bile'...). I am a bit of a lefty politically, so this kind of thing makes me feel quite sick about human nature and the things people will try and turn a profit from. This is 'part and parcel' of the world we live in though - personally I'd avoid them like the plague and find somewhere with a different ethos and motivation! The problem is, it seems there will be an increasing privatisation of healthcare, and the better places may struggle to survive 'in a competitive market place'.
I'd refuse to use such services and find another way - this 'other' option may not be as open to all though. They need a watchdog which has disabled people working on it.
Unfortunately, a petition will likely be ignored, yet it may feel good for you to show your dissatisfaction? In a sense, the best way to combat such moves would be to provide alternatives (yet without the financial backing etc. - it is hard to accomplish).
If my son was to ever need residential care, I'd have to look very very carefully at where he was going!!!
Damian - Community Champion
Posted by
mollie136
on 14th August 2010
at 17:36
If you tap any of the companies I listed in to the internet, the tip of
the iceberg will appear if you look for their care investments.
My son was at a school in Yorkshire. i tried to fight even with a formal
complaint, an Ofsted inspection at the time that was a fail, we got a very
dubious reply, but the people who were meant to help, never did, who could
blame them taking on a millionaire isnt easy, I went to the NAS only to
find they had made donations so were indirectly advertised on their
website. I have good evidence diet sheets/pictures of my son, but still I
couldnt fight. This is why 1 1/2 years on now the social services are
offering placements which are all at the portfolio owned companies, I am
more frightened than ever. Put in as though you wish to be an investor
& read what they say it is almost like selling my child for profit.
My son has been home for over year & has made excellent progress, I designed the programme myself, from my own studies, a spot of the cognitive & I explored self directed behaviour management, but not from medical studies, from a man Knowles. My dream came true he stopped hitting his head, I am so proud, cosistency & a 2:1 24 hours a day. From a family of four with 2 at work & caring.The problem is for some people at the profound end of autism, learning disability the city is a scary place where others can be hurt too. Care ratios need to be high. You also need a house that you will never afford. We live in a tiny rented terrace, housing is the issue thats inpossible to tackle. I have tried.The watchdog, that looks over council spending is another thats going to the private sector according to todays paper. It may be now that there will be even more issues, that are financial.Damian when my son went to a provision it was the only choice for him, the house was in bits, I was at risk & his brothers too as they were younger. I went to Sir Michael Rutters clinic, Dr Bernard, I used for advice, the head of childrens services, a trusted social worker checked it too. Researched, visited. Wrote a book about our son, to give as much info to help.But the reality was very different from what we thought we were getting, when we noticed things were wrong, we turned to all the sources you would think might help, nothing, got evidence, advocate, I still feel for him he dispaired, the only thing that saved my son was a whistle blower, who phoned me, scared I was motivated by love, I phoned advocate to call, he rang & said I "get him". We did within days, but I had to tell my husband, sons, it had to be a joint descision, we would face horrendous violence, financial ruin & as predicted hatred from the social services who would want us to fail. They came uninterested to see us had a meeting under the childrens act ignoring the state he was in, did nothing to the provider. A millionaire. A solicitor wrote & complained, they sent poor response, we couldnt fight & save my son, so now even the social services admit he is doing well, better than ever. But its still profound disability, all we do is work to fund, teach care. 4 of us 24hrs a day. The people who provided poor care/teaching were paid almost £300,000 a year, and were untouchable. They will say & do anything to get a contract. Thanks to this website its the 1st time anyone has replied when I have
tried to tell them. Even to question it.
Posted by
amberlight
on 15th August 2010
at 08:44
Alas, I can well believe it. whilst there are good providers out there, it's Big Money. Very big. And there is zero thought given by some of them as to who is actually doing the caring. Most shocking case I came across recently was from someone who worked in such an intensive care setting who said that in his view all autistic people were nothing more than vegetables, incapable of love and any real feelings at all. They're paying people like this to do nothing more than shift bodies around the place in a sneering way, whilst the 'PR' section tells you what a wonderful place it is.
Another worker in a residential home turned out to be a teacher banned from his work elsewhere for failing to care what happened to the pupils...who took to writing hate mail to autistic people living in the community. The sponsoring organisation were told, and did absolutely nothing. Cheap labour, no questions asked.
Plus very often the 'care' involves procedures that are literally torture for us, and people who cannot communicate in standard ways are competely unable to say what's happened or what hurts or why. they respond with violence and fear...and it gets worse and worse and worse until they give up. I know. I've been there growing up as a child on the autism spectrum who had almost no ability to explain for herself why life was terrifying and painful beyond measure at times.
As I say, there's good people, there's good centres, there's excellence to be found...but there are also horror stories that would make the worst excesses of Romanian orphanages look fairly tame, and charging £100k a year per placement to the local authority.
Ann - Community Champion
Posted by
mollie136
on 15th August 2010
at 23:04
Yes the negative view is bad, the older establishments have staff that think they are heroes, for looking after people with challenging behaviour learning difficulties. The other issue is how many people ever fail an low level NVQ? in care! I studied, work from the equal basis with people, which works very well on my project, always does! but not everyone has a boss that is like this. It is the first time I have a job where I have been able to try my best without being lynched, & be honest. Often if you make people more able others will try to put you in your place! It is the only job where good experience can be seen as a hazard!
I was on the web earlier in my search for a safe place for my son, I came accross this article:-In the last year there have been so many private equity transactions in the education market it has been almost impossible to keep up.
The private equity train rolls on
publication date: Jul 1, 2007
author/source: Richard Taylor
Copyright Meissa Limited (UK) 2010
Due to the private nature of sovereign wealth funds and investment firms, there is a cloak of secrecy surrounding their activities and internal affairs. Most of the companies involved with Three Delta are Limited Liability Corporations and as a result, little and in some cases, no information is publicly available. THis was an issue for Sainsburys at the time as it was them that they were preparing a bid for hee they are also in care!
If these firms are good, shouldn't their practices be regulated & transparent, after all the government have just spent a fortune on COMPACT training for the local sevices, why couldn't these providers be regulated monitored in the same way. Although it is not legally binding.
Posted by
demipowell
on 15th August 2010
at 23:20
Hi Mollie
I think sadly it is true that the "disabled dollar" is big big money now. Especially in the form of private schools. Its far easier for local authorities to pay off parents by passing their kids to a private company than by paying to actually form their own schools that can cope with our kids. Its soo soo wrong. The government has an obligation to educate kids (((unless they have special needs and then we will pan them off to some unregulated private company to make thousands from)))..
I was talking about this with a neighbour of mine who is restricted to a wheelchair following a road traffic accident and he comments a lot on how a service costs twice as much in a wheelchair as it did before. its a sad endictment of our society.
I wish actually there was something we coudl do that forced education authorities to provide the services themselves rather than farming the kids out for cash. Any ideas anyone?
Demi
Posted by
Josie Barnshaw
on 16th August 2010
at 14:49
Hi Demi and Julie (just spotted that your name is actually Julie and not Mollie as I have been calling you)
I was reading your posts on here and it strikes me that the solution would be to do what was done to establish the Treehouse School. It was started by parents who could not find the right education setting for their kids. It is by no means an easy road, but Treehouse and other parent formed schools show that it can be done, but it does take time (10 years I think it was for Treehouse if I remember the story right).
Josie - Community Champion
Posted by
mollie136
on 18th August 2010
at 07:33
Alright I am Julie I will come out!
Over the years I have always wanted to go it alone, or with friends to provide services for people that have autism embedded within an integrated LD practice/service, as I have a passion for teaching, possibly where there was a pathway that led to lifelong learning. Especially as I have noticed through my work that many people with learning difficulties, progression routes do continue long after most people. Its also lifelong learning that keeps progress, stops people being left in the same place for an eternity. Also the magical time to teach for me is the 17-25 age range + puberty has subsided & especially many people progress faster than at any other time. Though its surpising how older people who have not had opportunity can amaze me.
Unfortunately after years of battle we have always come up against the same issue property! Without a property you can't even start to raise funding & the area I live in has always proved impossible. Plus if you care & work to fund this, where do you find the time.
I have worked in FE/day centres, & at present a project where we have a enterprise project as a vehicle that has given me the greatest opportunity to discover what people want themselves, its a vehicle which has shown me that given a set goal to unite peoples strengths & weaknesses what can be achieved. With a worthwhile purpose, initially it was difficult to get people to make decisions/speak up take initiative/be responsible for each other & the job in hand, but its surprising what can be achieved. The issues debates that I end up supporting are pretty amazing "yesterdays was women living to be older than men", had to resort to looking it up on the internet. But it creates self directed learning as I get to teach the guys, you need more than one reference, how to discuss things, what you say is important,most important you can know more about somthing than others, namely me on this occassion. This was a group of people with mixed ability LD, half that would sit happily on the spectrum, though I don't usually get official diagnosis in my job. Later an older gentleman who has an LD came out with some quite surprising things about what he had seen & comparing my practice as he was working in the kitchen. I could only direct him to explore how we would deal with a similiar situation if it was us. If you have good practice theres a lot that you never dreamed of that needs to be dealt with.
One other issue is what has been deemed as the fishbowl theory by our project, many of the people only meet interact with people that are in the same group/went to same school etc live in the same catchment area or borough. Socially this has a great impact on their lives, so now our group are planning to share skills to try to meet others, the first of many ideas is to visit a festival supporting each other, I will juggle my week to plod along to unofficially supervise/support, but was invited as an equal which is good.
If anyone has an idea who wants to join forces? I would be happy to try! A vehicle I e.g a business for people to manage & run/behaviour management/education & suitable variable accomodation & care to go with this, that would be my dream. With progression routes for those able & ready!
My partners on the project were worried about funding 3 of the more able tried to take action, one wanted to walk about outside with a placard, one allegedly cornered the director outside of a function on his scooter though I only have his word for it, the other had heard of lottery funding so suggested buying a ticket, I am going to try to support them to write a bid think it might be good for them to use this diverse energy if they are willing.
Best Wishes Julie.
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Posted by
mollie136
on 13th August 2010
at 00:07
When I had a child with autism, I never thought he could end up as a profitable asset in a portfolio.
People with disabilities especially more profound are being seen as long term lucrative assets by investment companies.
Some of the companies are GI Partners. Bridgepoint. Venus. This is just an example. Investment is good, but shouldn't there be a watchdog? Is there any security, surely if cuts are as hard on them as they are on everyone elses budgets, will they pull out, leaving no where safe for people to go!
Best Wishes.