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Who By Fire

~ High ordeals and common trials

Who By Fire

Monthly Archives: Feb 2015

End of the Line.

20 Fri Feb 2015

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

adult LD services, independent living, institutions, learning disability, local authority, social enterprise, true stories, voices of disability

Upset and furious to find out that yesterday, one of my favourite places in Auld Reekie closed. Today, it is holding its farewell celebration for staff and clients. After 25 years of superb, sensitive, supportive and scrumptious service, the Engine Shed, a multifaceted social enterprise that trains young learning-disabled adults in its various businesses (a café, a bakery, a tofu production unit, an outside catering service and a conference centre) is having to close after Edinburgh Council withdrew funding.

The Engine Shed provided learning-disabled school and college leavers with a pathway to employment via an individually-tailored, time-limited, graduated training programme that linked on to external employer placements and then paid employment. All this while offering the citizens of, and visitors to, the Athens of the North, delicious vegetarian food and cheerful service. The model had a well-documented success rate for people with learning disabilities over the last quarter of a century, but Edinburgh City Council will now fund only one model of employment support for young LD adults, whereby individuals are ‘placed in work and then supported’. Bish, bash, bosh. Complete bosh, in fact. Where will suitable work placements will be found, after five years of national austerity, for learning-disabled youngsters with no prior training or experience?

Disabled workers, even those with years or decades of training and experience, have problems finding work. It’s worth remembering that two years after Remploy closed, 75% of its employees are still out of work and having to deal with the horrors of fitness to work assessments, Jobcentre Plus requirements and a callously draconian sanctions regime.

The Engine Shed is near Holyrood Park, where I spent many a happy Fringe Sunday watching acts ranging from the sublime to the ridiculous, swiftly bypassing the plain tedious. One of my favourite Fringe acts was a local one, Edinburgh Renaissance Band, a group of eccentric virtuosi who bring long-forgotten tunes to life on a variety of nearly-forgotten instruments: viols, lutes, sackbutts, cornetts, gemshorns, crumhorns, shawms, and one that always brought a happy smile to my face, a delightfully peculiar thing called – with good reason – a rackett. It looks like the offspring of a deformed oboe and a bottle-gourd and produces low, buzzing notes like a basso profundo bumblebee trapped behind a windowpane.

The other evening, Grenouille and I were – unusually – the only ones in the house, E and Papa being out doing Big Boys’ Stuff. G and I wound our way peacefully through the necessarily lengthy bedtime routine, and after bath-pj’s-medicine-supper-teeth-book-cuddle, I got G up and running on the overnight machines and went down to the kitchen to do the dishes. Once I’d turned the taps off, it was very quiet. Over the swish of the dishcloth, I could hear what sounded like a rackett, playing something that resembled ‘Old MacDonald Had a Farm’. I paused, pan and cloth submerged in the suds, and listened. It was definitely ‘Old MacDonald’, but what on earth was it being played on? Eventually it dawned on me that it was G, happily humming down the ventilator tube to make it vibrate. Probably does it every night, but normally there’s too much other noise going on immediately after tuck-in time for the performance to be audible.

Add your own conclusions here about how difficult it is for learning-disabled people to get themselves heard. Myself, I have a nasty feeling that the former and potential clients of the Engine Shed are going to find themselves pushed well beyond the fringes of the working world. I hope they have a riot of a party today.

***

P.S. There are two ‘Save the Engine Shed’ petitions running – one to the City of Edinburgh Council here and one appealing to the public for support here.

Edinburgh readers can ask their local MP to intervene by using this email link.

Anthem for ATUs.

10 Tue Feb 2015

Posted by Kara Chrome in Uncategorized

≈ 5 Comments

Tags

adult LD services, appropriate vocabulary, independent living, institutions, learning disability, preventable deaths

 

***

***

With acknowledgments to the wonderful Mitch Benn

***

Update

Blimey.  Within an hour of posting, I am getting requests for lyric and guitar tabs.

Well, I half-inched the tune from Mitch Benn, and I am nowhere near musical enough to know what key he played in; I just chose chords that I had a reasonable chance of more-or-less hitting, given that I was picking up a guitar after 20 years’ neglect.

Please feel free to choose the key that suits you; do rewrite/add to the lyric as the mood takes you – I am sure a little reflection could produce a great many improvements – and please do credit Mitch for the melody.  Thanks.

A                          D
Close the Units down
A                          D
Close the Units down
A                          E                      A                           E
Bloody close the bloody units down, you bloody bunch o’ shites
A                          D
Close the Units down
A                          D
Close the Units down
A                           E                     A
Bloody close the bloody units down.
E
Oh
E
Parliament heard vague statistics
   A
About the number of autistics
         E
Who end up shunted off to ATUs
A
Where they are not treated, but abused
D
Stephanie Bincliffe, Thomas Rawnsley,
C#
Not forgetting Nico and LB
D                                                E
Did no crimes but ended up inside
Where all of them died
So
Close the Units down
Close the Units down
Bloody close the bloody units down, you bloody bunch o’ shites
Close the Units down
Close the Units down
Bloody close the bloody Units down.
But
Four years down the line from Winterbourne
Four more families who are left to mourn
Absolutely no new policy
Coming from the bloody JIP
Alicia from HSA told you
About all the things that you could do
To get people swiftly sorted out
You had no clout
You didn’t
Close the Units down
Close the Units down
Bloody close the bloody units down, you bloody bunch o’ shites
Close the Units down
Close the Units down
Bloody close the bloody Units down.
Then
Anne and Margaret on the PAC
Asked their questions very carefully
Between Bubb, LAs and the NHS
It’s all still a real bloody mess
Six more months is six more months too long
Eighteen months is several times more wrong
Couldn’t you have just got on with it?
You’re really shit
Just
A                        D
Close the Units down
A                        D
Close the Units down
A                          E                     A                           E
Bloody close the bloody units down, no more excuses now,
A                          D
Close the Units down
A                          D
Close the Units down
A                                    D                    E
Norman, please stop acting like a clown
        D                            E                   A           E A
Just bloody close the bloody units down.

Letter to Martin Foley, MP, VS Govt : Minister for Housing, Disability and Ageing; Minister for Mental Health; Minister for Equality; Minister for Creative Industries.

06 Fri Feb 2015

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

Tags

adult LD services, autism, institutions, true stories

To: martin.foley@parliament.vic.gov.au
From: kara2008
Date: 6 February 2015 09:00
Subject: Appropriate services for James Pascoe

Dear Mr. Foley,

I was delighted when the Department of Human Services agreed to free James from being shackled to a hospital bed and to support him with expertise and care.

I am horrified to hear now that the agreement has not been kept.  James’ parents are so alienated by James’ house staff that they have had to make the heartbreaking decision not to visit him.  The expert agreed to has not been paid in six weeks and must withdraw.  A special programme to allow James to recover from weeks of being shackled to a hospital bed, and from the preceding trauma that led to his admission, has never been put in place.

James was taken back to hospital because he became so distressed that he was hitting his own head to the point of an ambulance being called.  He went into the emergency department at the hospital on Thursday 29th January 2015 and is once again being subjected to the degrading treatment of being shackled to his bed while no attempt is made to rectify the underlying cause of his problem: that his accommodation takes no account of, and does not support, his autism-related needs.

His parents have asked Brendan Fogarty of DHS Northern Region to let them manage James’  funds and hire their own staff, pay the expert and get James the help he needs. Mr Fogarty will not change the status quo.

Please do what is needed to protect James from further inhumane treatment. Autism is a developmental condition, not a mental illness, and coercive mental-health approaches are likely only to escalate James’ stress and reduce his chances of recovery.  He needs to live in a way that allows him to be what he is and what he is supposed to be – an autistic young man – in an environment that supports him instead of presenting him with unmanageable challenges at every turn. James needs to be helped by people who understand autism and don’t try to force him to comply with non-autistic ways of being.

Please  allow James’ funding to be self managed so his family can try to break this terrible pattern.

With thanks in advance

Kara

***

James Pascoe

***

Update:

To: Kara2008
From: donotreply@dhs.vic.gov.au
Date: 6 February 2015 09:01
Subject: Re: Appropriate services for James Pascoe

Thank you for your email. Your email is currently receiving attention and a response will be forwarded to you at the earliest opportunity.

Yours sincerely

from the Office of Martin Foley MP
Minister for Housing, Disability and Ageing
Minister for Mental Health
Minister for Equality
Minister for Creative Industries

__________________________________________________________________
This email contains confidential information intended only for the person named above and may be subject to legal privilege. If you are not the intended recipient, any disclosure, copying or use of this information is prohibited. The Department provides no guarantee that this communication is free of virus or that it has not been intercepted or interfered with. If you have received this email in error or have any other concerns regarding its transmission, please notify Postmaster@dhs.vic.gov.au
__________________________________________________________________

A Message from Paula.

05 Thu Feb 2015

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

Tags

#justiceforallthedudes, #justiceforThomas, adult LD services, Down syndrome, institutions, LB Bill, learning disability, mothers, preventable deaths, true stories

From Paula Rawnsley:

“4 February 2015

First of all I’d like to thank everyone for the well wishes and immense support but the latest news is that Thomas’ life support was switched off today and he’s now in a place where nobody will ever hurt him again.

His memory will never be tarnished and we’ll fight for justice.
 
The most beautiful little boy in the whole wide world. My superstar, Thomas Rawnsley xxx”

The announcement came late in the evening of the 4th, just as Dr. Sara Ryan was appearing on the BBC Newsnight programme (34 minutes in) to talk about the death of her son Connor in another ATU.

Thomas hat

***

Paula spent the last two years of Thomas’ life battling to get him away from institutions where he was being abused, and into truly supported living.  Now, like the mothers of Connor Sparrowhawk and Nico Reed, she faces the prospect of another long, gruelling campaign to get the truth about the manner of, and reasons for, Thomas’ death.  You can find out more here and pledge your support here.

And if you live in Yorkshire, you could consider helping here.

Thank you.

***

Appeal for Thomas.

03 Tue Feb 2015

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

Tags

(un)accountability, adult LD services, Down syndrome, institutions, NHS, true stories

From Deb Aspland and friends:

Paula Rawnsley’s 20-year-old son Thomas is in hospital on a life support machine.  Thomas was taken there on Monday morning after suffering a heart attack in the specialist unit in Sheffield where he had been held against his and his family’s wishes under an order from the Court of Protection.  His family live in Bradford, 45 miles and one hour’s drive away.  Thomas’ mother Paula (his main carer and advocate) doesn’t drive.

Paula and Thomas

Thomas has survived pneumonia twice in the past and is very vulnerable to chest infections. He had a chest infection again recently and Paula had raised the alarm about this several times in the week prior to his heart attack, as she feared another bout of pneumonia.  She had been asking for a chest X-ray because his coughing and wheezing were so bad.  The concerns she raised appear to have fallen on deaf ears.

There has been a lot of discussion amongst Paula’s friends and supporters – lots of people saying this cannot be allowed to happen again, asking what can be done..…..we know of other young people this has happened to and is still happening to, despite all the concordats and reports that bluster on about the need for change, but do nothing.

Therefore we will seek funding through Bringing Us Together to pilot a ‘Justice Squad’ – a team of people with a co-ordinator who can come together around a family whose child/young person is in crisis and detained against their will – to provide whatever support is needed and is feasible.

It will take some time to get this in place and it doesn’t help us to help Paula and her family right now, so we need your help.

So that we can help Paula and her family right now, please can you make a donation to this page.

The funds raised will be dedicated specifically for Paula and her family – to fund any costs associated with getting justice for Thomas e.g. legal advice, attending meetings etc.  If funds are not needed or there are excess funds, we will apply them to the next family of a child/young person in crisis and detained against their will and needing help.

Please help us to help Paula, Thomas and family – we can’t do it without you.

Please note that Go Fund Me takes 7.4% of all donations.

Katie, Zoe and Debs.

Thomas, fighting for his life

02 Mon Feb 2015

Posted by Kara Chrome in Uncategorized

≈ Leave a comment

A whole load more

Today I planned to go to a CPA meeting as an advocate. Thomas is living in a specialist setting miles away from home and against his own and his family’s wishes. Lots of people are working together to support the family to negotiate an impossible system that is blocking every attempt to get Thomas close to home.

This weekend his family noticed unexplained injuries. On top of that he was struggling with a chest infection that they knew was serious. Families know that stuff, born of years experience of loving and caring for their son, and we all know how important it is to listen, don’t we?

It seems that the lessons learned, Death by indifference, Connor Sparrowhawk, Nico Reed….. a list too long to name each individual, have not been heard.

Thomas collapsed on Sunday night and was given CPR. He has sustained massive brain injury, his heart and…

View original post 32 more words

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