Every day is an autism day in Claire’s life -World Autism Awareness Day 2022

This piece is written by Claire Dyer- Claire writes phonetically, this means she writes the words how they sound. At first it might be hard to read for some people but if you read the words as they sound you will get used to it very quickly. 

Threw primary school claire olways had a T-shirt jumper and hoody on wot ever the wether becos claire 2 dis day 2 not no wen claire is hot or cold or wen claire is hungry or thirsty and not no wen need toilet .

Claire wos finally diagnosed with autism in 2010 at age 16 after find in it relly hard 2 transition 2 high school and cood not cope and manage eny of the work and moov in class rooms and the bells ring in at end of every lesson and lots different teachers and support teachers and 2 meny people every wer and it wos relly bisy .

Claire had startid 2 stop eat in. Claire wos eat in 2 spoons of spaghetti for dinner and tea and the dietitian sed claire need fortisip.  Dey wos disgusting and claire try tiny bit and did not hav eny moor. Sow for years claire hav loads different test like blood tests and lumbar punctures and skin biopsy and MRI and EEG and ECG and lots different scans and tests.

By dis time claire startid hav in a fear of drs nurses hospitals injections and needles and wos trash in hospital wen claire had 2 bee carry in from the car and lots drs and people say in claire has lots autism traits . Drs diagnosed claire with dementia and sed claire wood not see Claire 18th birthday 2 dis day der wos no proof on eny tests claire had dementia claire had just autism regression and depression and a big brake dawn.

Claire behaviours start get in wers and wers and claire wos run in away from every wer and every 1. Sow Claire go ferst psychiatric hospital wen claire wos 15 in 2009 in Bristol priory section 3 and der wos lots incidents. 

Claire had a feeding tube and uther young people wood set der bed rooms on fire and enything dey cood get der hands on and claire wos absolutely shit scerd and dat made claire hav moor supine restraints on the floor by 9 men and injection in claire bum 2 sedate claire.

Den llandrindod high school sed claire not a loud back bee cos it wos like a baby sitting service cos just try in 2 keep claire safe sow by dis time every 1 wos say in claire wos autistic and claire had stopped talk in selective mutism and needid full time support and personal care support.

Claire wos in pull ups in the day bee cos claire had olways bee in pull ups in the night cos claire had olways wet the bed. Den transition 2 ysgol penmaes in Brecon brilliant school but the travelling relly youse 2 wind claire up.  Sow claire behaviour wos relly bad by time claire get off the bus and in 2 school and den go hafod newydd in 2009 on section 2.  Wood you bee happy go in in a van with 3 rapid and secure staff ? People claire did not no and Claire did not no wer the hell claire wos go in .

Claire wos nursed on own ward 3:1 24/7 and Claire wos in for 6 weeks and cum out a week bee for Christmas but the hospital keep the bed open over Christmas and new year until a childrens care company from Manchester startid with claire. Dey wood bee work in 2:1 with claire 8-8 and den dey wood go and stay in a B and B and bee on call orll night.

The carers wos trained in mental health sow just restrained claire strate away and did not understand claire and claire hated hav in 2:1 support inside the family house and outside.  In January claire go back 2 ysgol penmaes but claire carers had 2 cum 2 school with claire as well. Moov back 2 Swansea in may 2010 and the carers cum dawn 2 Swansea till the summer holidays and dat is wen claire finish in ysgol penmaes a brilliant special school .

Diagnosed with autism in September 2010 and startid in a special school in Bridgend heronsbridge but agen struggle with the travel in.  Sow claire behaviour get wers and claire startid sleep in lots and lots 22 hours a day claire and den wen claire wos awake claire start be cum in aggressive. Drs cum in 2 the house and wos den start in talk about palliative care bee cos claire wos sleep in and not drink in and not eat.

in 2011 claire wos section 2 in hafod newydd on claire own ward nursed 3:1 24/7.  Claire had good day and bad days but claire relly injoyed.  Claire wos diagnosed with epilepsy and den claire section 2 went 2 a section 3. Claire had 5 staff take claire 2 hav sum teeth out under general anaesthetic.

Ty coryton orbis cum 2 assess claire but der wos a big problem and claire cood not go sow claire hav 2 go in 2 princess of wales hospital in Bridgend and hav IV food and IV fluids and a 2 day transition with 2 staff from beechwood college. Wen claire wos lie in in a hospital bed der wos 5 staff and claire in a hospital room.

In may 2011 claire wos transferred 2 beechwood college with 3:1 staff in the day and 1:1 staff by night.  Claire wos very ill at dis time and wos not eat in drink in.  Claire went in 2 llandough hospital and it wos or full claire had 2 hav B12 injections in 2 claire tummy and claire hav a big fear of injections sow hav 2 bee restrained on the bed and claire wos cry in and scream in.  Den wen claire get discharged from llandough claire go back 2 beechwood college and nurses had 2 giv claire the B12 injection dey cood see haw distressed claire wos and sed it’s not fair sow dey stop giv in it.

Der wos good days and der wos bad days.  1 of claire support staff start do in speech therapy with claire and claire speech start cum in back slowly but claire wos bored sow den claire behaviours bee cum a lot wers and claire had lots and lots of NEADs.  Doors and everything wos locked needid a fob 2 get threw orll of the doors and a different key 2 get out and der wos electric gates in 2 the outside of the college.

Claire 18th birthday wos cum in up and claire wos relly struggling bee cos years ago drs sed claire wood not see Claire 18th birthday.  Sow claire fink claire wos go in 2 die.  Claire wos in supine restraint over 10 times a day sum times lots moor a month after claire 18th birthday.

Llwyneryr AATU cum 2 do a assessment and cupl days later claire go der and get a section 2.  It wos bored no routine no structure different nurses orll want in 2 drink coffee and wantid claire 2 sit and wotch tv orll day.

September 2012 mami dadi go see a care home in Carmarthen and relly liked it and den cupl weeks later cum 2 see claire and den claire start transition claire moov in January 2013.  The grange hav a lovely sensory room. 

Claire wos 3:1 by day and 1:1 by night but a service user manage get in claire room at night lock the door and youse claire toilet.  Claire go scream in dawn sters and claire did not hav 1:1.  The staff wos sleep in in the lounge and claire do complaint but dey did not beleave wot claire say and orll the staff stick 2 gether and agree with ech uther.

Den claire wos try leave the grange and dey tied rope 2 a car 2 keep the frunt door shut.  Sow claire phone mami dadi and say claire want cum home and claire go home and never returned.

Claire care manager keep try get Claire go back 2 Carmarthen and claire say no. Claire wos at home for 13 weeks and den SBT cum 2 the house and say claire you do not look ok fink it wood bee best for claire 2 cum back in 2 llwyneryr sow claire did. 

Claire wos bored and lots different staff and claire on a section 3.  Claire behaviour get in wers bee cos claire bee in tell look in at a autistic college in Biddeford and a Psychiatric intensive care unit in st Andrew’s Northampton.

Sum 1 from der cum 2 do assessment and it wos a day claire go home sow claire go back at time.  Nurse ask Claire bee back and man had orll redy bee and look threw claire notes and had go.  After lots and lots of mental health tribunals a medium forensic secure hospital in Brighton the dene cum 2 assess claire.

Claire go 2 the dene in august 2014.  Mami dadi and solicitor manage 2 stop claire bee in moov strate away but den mami dadi nicola mam Aunty Liz go 2 court in London and the judge say if do not go tonight will loos the bed.  Sow rapid and secure 1 driver and 3 staff take claire 2 the dene in Brighton a medium forensic secure unit and claire get der about 10:30.

Der wos 10 staff in a line sow claire cood not run off.  Staff strip serch claire and with a metal detector claire go 2 the ward and claire wos with murderers and people hoo wos relly ill.  It wos the rong plays for claire orll the staff sed and signed claire petition 2 get claire back 2 Swansea.

Mami dadi nicola Andrew Jonjo wood cum and see claire every Sunday and mam dadi cum see claire every wensday.  Sow after lots of prone restraints and lots of sedative meds and injection in the bum after 13 weeks claire cum home 2 Swansea.

In January 2015 claire start transition 2 NAS day service in Neath. Der wos lots good day and sum bad but claire relly injoyed and had 7 hours a day 6 days a week 3:1 staff and go swimming and do woodwork and cooking and bike ability and loads moor.

Claire go on respite for the ferst time in October 22nd 2015 a year exactly 2 the date claire cum home from Brighton and had about 6 respite in bluestone and Bridgend and NAS promise claire own residential home but do lots of planing but it orll fall threw cos cood not moov the uther residents out of the house.

Claire not good and strop with mami dadi and orll family and MDT and not talk 2 eny 1 and claire get admit 2 hafod y wennol in pontyclyn for 4 night 5 days and had lots support every day from day service and with lots of planing meetings.

Claire had orll the rest of claire teeth out with 6 staff and management from day service and orll of ABMU PBM trainers in princess of wales hospital in Bridgend.

July 2018 and dat wos the last day claire had with NAS day service. Claire still keep in touch with sum staff naw.

September 2018 perthyn start transition and but it did not work and perthyn stop supporting claire .

November 2018 claire hav a good Pa amy and claire relly injoy do in arts and crafts and playing games in the night after amy finish work .

2019 claire hav 3 moor direct payments But only fing is you can not get 2 direct payment staff dat work part time with claire and full time els wer 2 cum the same time and same days is impossible.

Covid 19 March 2020 claire keep do in lots walk in with dadi and Archie and arts and crafts with mami and shopping with a mask on with dadi. 

December 2020 mami sed wood claire youse a indoor mini trampoline. Claire say yes and sow order 1 claire start do in 2 miles and hav naw get up 2 12 miles in the morning. Wen claire awake bee tween 4 and 5 and dadi gets up with claire .

November 2020 claire start ask in for domicilary care. M and d come 2 do assessment but say cos covid and claire need consistency from a 2:1 staff team and pbm and Claire’s complex needs dey cood not provide a service.  Den claire social worker get involve and cartrefi cymru. Swansea cum back and say dey cood provide a service sow MDT and SBT do lots of training and PBM training.

March 1st 2021 2:1 staff and start with tiny baby steps and small steps and naw claire hav 2:1 3 hours Monday wensday Thursday Friday and 7 hours on a Tuesday and claire is relly relly injoy in do in lots of walk in and climb pen y fan and hav been 2 Bristol zoo and folly farm and do in lots of exercise and swimming and trampoline in.

In February 2022 claire and cartrefi staff go on respite 2 ty tanglwyst farm and it wos brilliant and hope in for lots moor respite and hav in lots moor fun with cartrefi. Claire hope claire hours can keep go in up and dat 1 day claire will hav own home with cartrefi supporting claire 24/7.

At the minit claire relly in joy in walk in with dadi and Archie 6 miles in the morning and go in out with cartrefi and claire still hav amy cum 3 times a week. In the last month 2 of claire PA hav leave sow just hav amy as a PA.

Claire is autistic and proud xx sum days is brilliant sum day is good and sum day is bad and sum days is horrid but with the right support claire is relly happy and Claire’s mental health is beta dan it hav bee for years.

Claire is 28 years old and is autistic with learning disabilities challenging behaviour and NEADS. Claire has 2 dogs at home Jonjo a jack russell hoo is 8 and Archie a jackshund a jack russell cross dachshund hoo is neely 3. Jonjo do not like walk in far but Archie will walk miles and miles.

The 2 dogs Claire like 2 call Claire companions. Claire is not thick or stupid sow please do not talk or wispa about Claire in frunt of Claire.  Or if need talk about Claire inclood Claire.

Claire like keep in bisy Claire like walking miles and miles trampoline swimming shopping cooking bikeability arts and crafts woodwork pottery.

Claire live at home with mami dadi Nicola and Andrew and 2 dogs. Claire love Claire family lots and Claire has good friends.

Claire is very clever in Claire own way. Never lie to Claire. Never bee scared of Claire. Please Trust Claire coz Claire never want to hurt anyone or anything.

Wen Claire is good Claire is very very good but wen claire can not cope Claire is bad and horrid. Claire never try bee bad or horrid. Claire finds things hard and can’t cope on times and fingers crossed Staff can bee there to help Claire cope when things get difficult xx

Claire need 2:1 staff to help keep Claire safe and help Claire and in a meltdown. Claire needs staff to intervene to help calm Claire.

Claire wood like own safe proof bungalow with a drive and a lounge a bathroom a kitchen a garden with a swing and 1 staff sleep room and a bedroom for Claire and a room for a sensory room.

2 pictures is from staff dat youse 2 work with claire say in wot dey hav learn from claire xx

❤️

Outpatient Appointments in Adult Medicine

What’s it like? I hear you ask.
What happens? I hear you ask.
This is our story.
Both myself, Julie, and my husband, Samuel, are autistic. We are adults. We are in our thirties. I regularly get asked to attend outpatient appointments for different long term health conditions. Both myself, Julie, and my husband, Samuel, attend together because I like to know another person is there witnessing the appointments.
Before the outpatient appointment I ring ahead. I let the department, which ever one it maybe, know I am autistic and would like a double appointment as a reasonable adjustment to allow me more time to process the information.
On the day of the appointment myself, Julie, and my husband, Samuel, arrive at the reception we are often told the reasonable adjustment was rejected and it is only a single appointment.
We are called into the room with a consultant. The consultant has managed to be told I am autistic. Straight away the consultant turns to my husband and begins to speak.
Asking why is she here? Why has she been referred here? And often who are you?
My husband who finds speech hard manages to mumble I am autistic too.
The consultant stops.
The consultant looks at us both.
Then the questions begin again.
Why are you here?
I begin to explain.
How do you know that is a symptom?
I begin to explain.
But you have autism how do you know it isn’t just your mind playing tricks on you?
Here I stop. I pause. I freeze.
I begin to doubt myself. I begin to question myself. In side I am in knots.
The consultant continues talking but I am frozen inside. I no longer hear a word. I glance to my husband his eyes tell me he too is frozen. Lost for words. Not sure what to do. Dithering inside like me.
We are both stuck. Here in a room with a consultant who clearly doesn’t know much about autism and has an opinion of what autistic people are like.
We leave the room disheartened and confidence thwarted.
The scenario I have described above is sadly a regular occurrence in our life. It is rare we experience anything else.
We support one another the best we can but there are times when we are both lost for words and only our eyes can communicate with one another.
We do not have anyone else who can support us. We are deemed as able to manage as we have one another.
So back to the opening questions.
What’s it like? An outpatients appointment in adult medicine is distressing, overwhelming and judgemental.
What happens? Assumptions are made about your ability because you have disclosed you are autistic.
It seems disclosing you are autistic means all your symptoms are silenced and you are left to feel like you are a time waster. It leaves both me and my husband wondering why we make the effort to try to speak and why we make the effort to describe symptoms when they appear.

#Good Life

Steven Neary with his support workers going out on a bus

 

We hear a lot about ‘What Good Looks Like’ when organisations try to change what they do. We asked people who have social care to send us photos of what a good life looks like for them.

This is what they sent- click here Good Life

If you want to share more photos of what a good life is for you,  use the hashtag  #GoodLife

An Open Letter to Claire Murdoch and Ian Trenholm

Dear Claire and Ian,

Re proposals about using CCTV in ambulances

I apologise if you find the tone of this letter inappropriate, but I find what I am having to respond to in the contents of this document I was reviewing for work, ‘inappropriate’. I assure you my views are considered.

Every week, I sit in various meetings with people such as yourselves, who have the power to change things, and I ask the same question, “How do we know autistic people and people with learning disabilities in long term segregation are safe?”. Every week, I watch people roll their eyes, ignore me or give me a half smile.

This morning I got a message from a friend of mine who is in long term segregation. There are almost 100 people in long term segregation. The person concerned has been there over a year – in a room, with only a mattress. The person is watched 24/7 on CCTV. They hate the CCTV. They see it as breach of their Article 8 right to privacy. They are right. It does breach their rights, but, for some reason, CQC allow it.

Anyway, I am assured that this person is safe. But this morning I find out they aren’t safe, exactly as I have told you, time and time again. They’ve been subject to sexual abuse for the last eight months! Eight long, horrifying months of abuse!

Guess how much of it was caught on CCTV? None of it!

Now this isn’t surprising is it?! Whorlton Hall had CCTV in it. Many units I was in had CCTV. The only thing that CCTV was ever used for was to criminalise. CCTV criminalised my friend – it didn’t save them from abuse. Instead it abused them.

And now I find you plan to ‘watch and record’ us while we travel in an ambulance when we are at our most vulnerable. How would you like to be recorded, for everyone to see, when you are at your worst?

You see last week, I read a document about changes to ambulance transfers to make them better… one of the main solutions was to record us on CCTV. What a joke that draft document is.  Here’s why.

First of all, I’d like people to stop talking about me/us like we are a parcel out for delivery. Change the language to reflect the fact we are human.

This is a cage you transferred me in.

Second, there is nothing in the document about how autism or learning disability will be considered or supported. We make up a huge amount of the population of inpatient services. We spend the most time in hospital – usually more than 5 years. We are often transported hundreds of miles away from home. Why haven’t we been considered?

I was transferred probably more than 50 times. I have had to sit in a cage in those ambulances. I felt like a dog being taken to a dog pound. My legs were tied together, my hands cuffed behind my back, trying desperately to remain seated on a narrow, wooden bench, no seat belt. I’ve had to shit myself and piss myself and then sit in it for hours because you wouldn’t stop for me to go to the toilet. I had to sit with a bright light shining on me, cage rattling up the motorway experiencing the most awful and painful sensory overload because you didn’t consider my autistic needs, let alone my human needs. AND NOW IT IS SUGGESTED THAT THIS BE RECORDED ON CCTV? Seriously.

Yes people! The NHS and CQC want to install CCTV in ambulances! They want to record what I’ve just described. Apparently, the CCTV is being installed for our own safety. It didn’t keep me safe, it didn’t keep my friend who has been locked in a room for a year safe.

What will happen is that the CCTV will be used to threaten us and criminalise us. My friend above has been criminalised, but their abuse went unnoticed. When they, or I, or you kick off because we have been subjected to inhumane and degrading treatment (in our most vulnerable moments), staff can call the police and show them what bad people we are on the CCTV. And even more, when the CQC come calling, staff can show them some contrived scenes especially acted out for the benefit of CCTV that show what lovely, caring people staff are.

CCTV is not the answer to stopping abuse. The answer is paying the work force properly. Putting in place actual trauma informed care and services. Supporting people in their own homes. Treating people with dignity and respect.

 

CCTV is a breach of our human rights. Full stop. Let’s not legislate to further breach our rights!

We already have a reduced ability to advocate and challenge the system. If you are worried about patient safety then know that CCTV will only increase the power differential.

I appreciate CCTV feels like an easy fix. However, let’s start from the position of people’s human rights. Then it’s really clear that the addition of CCTV in ambulances is diluting rights.  It can’t possibly pass the proportionality test: is it lawful, legitimate, proportionate?

Please don’t put CCTV in ambulances. Kindly review how it is used – and abused – everywhere else.

 

Let me finish by asking you 3 questions:

How can this guidance justify CCTV as the least restrictive option?

What other alternatives that don’t breach peoples’ rights have been considered?

Why aren’t other alternatives mentioned/used?

Ian and Claire, Rightfullives would really appreciate a meeting to discuss this. We have some insights which we feel are important and need to be considered.

 

Best regards,

 

Alexis Quinn – Rightfullives

I am a Prisoner by Danielle Attree

A poem by Dannielle Attree, reflective of now.

I am a prisoner left to suffer, immense pain.
Trapped in Seclusion, slowly going insane.

Made to feel ashamed of who i am,
No here gives a damn.

So many chaotic thoughts spinning around in my head,
Always anxious-on the edge,
This is no life, I would rather be dead.
Not waking up every day filled with dread!

How much more do I have to take?
How much longer until I get a break?

I am a shadow of a girl, invisible to most- completely broken,
All ALONE…
The girl with no face, that will NEVER go home.

©️ Dannielle Attree.

Winterbourne View 10 year vigil, Monday 31st May 2021

Join us in a vigil to remember the abuse at Winterbourne View

On the 31st May 2021 it will be 10 years since Panorama screened the undercover footage of the abuse at Winterbourne View.

Winterbourne View Hospital

Even though Winterbourne View closed, abuse is still happening to some people locked up in hospitals like Whorlton Hall.

Abuse at Cygnet Whorlton Hall

Despite all the plans to change things for the better, there are still more than 2000 people in hospitals because there are not enough community services.

A vigil is a peaceful demonstration, usually without speeches.

Some people light candles or a lamp and put it in their window.

Some people light candles outside with others.

Some people pray or reflect by themselves.

You can take part by…

  • Holding your own vigil on Monday 31st May- you can do this by yourself, online or with family and friends
  • Sharing your vigil on social media by tagging us and using the hashtag #Winterbourne10
  • Sending us a photo of your vigil by the 14th May so we can put it in a video on the Rightful Lives website to show our support to people in hospitals and their families.  email exhibition@rightfullives.net

You can download, print and use these posters or make your own for the vigil

 

 

 

 

 

OR MAKE YOUR OWN POSTER ON WWW.POSTERMYWALL.COM

 

 

 

 

Rightful Lives Investigates…Behaviour Analysis and Support

The use of PBS for autistic people has generated a lot of debate. Many autistic people say that, when used as a derivative of ABA, PBS is damaging and traumatic. On the other hand, some family members believe it has been a lifeline for their loved one.

As part of the first in the series, ‘Rightful Lives Investigates’, we want to look at people’s experiences and gather views. We’d really like it if people could send us their stories in any form with which they feel comfortable. For example, this could be written down, a recording or a video.

We will initially publish these here on our blog. We are designing a new website so eventually they will be transferred to that.

To start us off, Alexis Quinn has prepared a video of her experience of PBS. Alexis is putting her own experience forward and appreciates that everyone’s experience is unique. Click on the You Tube link to watch her video.

PBS & ABA part 2

Following our opening blog by Alexis Quinn on the topic of PBS, we are now publishing the views of another contributor. Behaviours mentioned have been changed to protect privacy and the author wishes to remain anonymous. We welcome other contributions to keep this debate going.

“I wanted to contribute to the “Rightful Lives Investigates” on PBS as someone who values the perceptions of autistics lived experience, as the sibling of an autistic, as the mother of an autistic, but also as someone who has had an experience from the “other side of the fence”.

A few years ago i was a Support Coordinator, managing a team of staff, coordinating care packages and working with family members. I had a background working in residential, supported living and psychiatric hospitals. I have always, despite being female always been delegated to posts that support people who are “complex” or have “challenging behaviour”. In my experience what this means is people who do not communicate verbally and who have co-morbid physical, developmental or mental health issues. I have always been uncomfortable with physical restraint. I have experienced it myself in my youth and resented training which focused on physical restraint such as PMVA. When i was trained in PBS it finally felt like a format I could work with. As a team leader my staff were not taught how to restrain the people we supported which felt like a massive step forward. They were taught that standing blocking a door was restrictive, they learnt locking the back door was restrictive, they learnt about least restrictive practice and it helped. Some of the people I worked with were being restricted by their family members, they were hurting themselves trying to communicate their needs, their physical, emotional and sensory needs were not being met. PBS gave me a format by which I could investigate more thoroughly, find and communicate the reasons behind behaviour and outline what the staff team were expected to do in writing. This meant that I was given time to identify and work directly with the people my team supported at the times they most needed support (rather than on a rota system), i had staff who were actively observing everything and documenting it rather than receiving a quick note that someone had self harmed. It meant that I could tell a parent ; “when you do x your family member hurts themself, therefore I am firmly asking you to consider whether you need to do that” and take appropriate action to educate them and explain which laws protected their right not to be restricted. It meant that I could identify that perhaps someone is flapping their arms because they need to get away from noise and they need physical movement to regulate themselves and put it in writing to remind that person that they can go outside to get away from the noise and use a swing. That perhaps the person banging their head on the floor with a blanket over their head has a headache and may feel better if we offer paracetamol and some quiet time in a dark space. The plans I wrote explored the needs of the people I was paid to support- i can say with a fair amount of certainty that no part of their plan tried to make them neurotypical, if anything it provided more evidence that we needed to provide more sensory input, the plans gave me evidence that I could use to agree an increase in commissioned support hours.

Basically, when I completed my qualification in care management I educated myself on PBS, where it came from and why some parts of it’s history such as ABA were extremely negative. The only part of ABA that we were required to use was a documentation of what happened before, during and after an incident. This meant that i could see what could have upset the person and what had or hadn’t worked. It also kept my staff team accountable for their actions. The main thing that could have been different from the experiences of PBS that I have heard autistic people talk negatively about is the aims. My aims were always based on communication improvement (including sending members of staff on courses, teaching them on shift and making resources available), and environment improvement (including reducing triggers and providing sensory equipment that was accessible at all times). We didn’t target autistic behaviours, we targeted behaviours that were communicating an unmet need. It was never about changing a person, it was about putting right a system of neglect and misunderstanding. I feel that behaviour has a massive place in communication and that we need to be listening to and understanding those behaviours. Another person I knew would say (phrase changed for privacy) that they were going to hit the wall whenever they were in public places. As a result their activities in the community were really restricted. The first time this person said this to me we were in a busy shopping centre, in short I basically said something along the lines of “you could do that, we would probably be asked to leave and may not be able to come back again, or if it’s too much to wait for our shopping today we could just get a taxi home and come back tomorrow?”… they chose to get in the taxi, we went home and i wrote it in a behavioural support plan that if they started talking about hitting walls to give the option to leave immediately and schedule an alternative time to complete the task. The person learnt that people would listen to them when things were too much. There were no rewards or punishments, but natural consequences of having needs met and increased access to community activities could be argued to be a reinforcer. The staff team learnt that they could provide options instead of restricting a person.”

The Letters to Equality and Human Rights Commission & Joint Human Rights Committee

After the launch of the September 2018 exhibition, in collaboration with Alicia Wood and Andie Gbedemah, we began a letter writing campaign.

 

Letter to the Equality and Human Rights Commission and the Joint Human Rights Committee signed by over 700 people and organisations that led to investigations in to the human rights abuses of autistic and learning disabled people in ATUs

Plain English letter to the Equality and Human Rights Commission and Joint Human Rights Committee

The 8 Point Plan

The 8 point plan is a crowdsourced plan that states the basic action that needs to happen to ensure the human rights of autistic and learning disabled people forms the basis of the care people need.
1. A review and plan for everyone in an in-patient hospital to get community support within 12
months or sooner;
a. Including a strengthening and greater focus on the use of Community Treatment Reviews CTRs and Community and Education Treatment Reviews CETRs;
2. Steps should be taken by all responsible bodies to ensure that individual’s rights under
existing legislation are being met and that public authorities and publicly funded bodies are
meeting their statutory responsibilities;
3. The establishment of an independent body led by people with learning disabilities, autistic
people, families, lawyers and representatives of key stakeholder organisations, that has the
remit to monitor and hold responsible bodies to account, in accordance with the
requirements of existing legislation.
4. Increased funding and investment in community services, preventative support and in the
transition from inpatient hospitals.
a. Including the funding of specialist teams (Hit Squads) with people who have expertise to
help stop people being detained under the Mental Health Act.
5. Families’ and friends’ right to visit, when a family member or friend has been detained under
the Mental Health Act 1983, being properly enforced and work undertaken to prevent the
misuse of current legislation by providers and commissioners in inappropriately silencing
and gagging families, friends and advocates;
a. Including the right to speak publicly about an individual’s detention in accordance with
current legislation where this is with their consent or in their best interests;
6. Information and transparency about local area and national plans to support and meet the
needs of people with learning disabilities and autistic people, the numbers of people in
inpatient hospitals, where they are, how much money is being spent and by which
commissioners.
7. STOMP (Stop over medicating people) to be part of all NHS and private health care practice.
8. In the longer-term, support legislative change to strengthen people’s right to independent
living and a life free from the threat of detention, with community alternatives to hospital
care:
a. Drawing on the principles outlined in the Draft Disabled People (Community Inclusion)
Bill 2015, also known as “the #LBBill” so that laws and home admission considered first;
b. The United Nation’s Convention on the Rights of People with Disabilities;
c. Giving CTRs and CETRs statutory powers;
d. Including strengthened rights to advocacy and independent support for people without
families or whose families are not involved in their lives;
e. Rights to peer advocacy and visits from friends and people who know them well;
f. And strengthened rights for families whose family members have been detained.

 

More about the 8 point plan RL-8-Point-Plan-V5

Self Advocacy- what is it and what’s happening to it

A guest blog by Jenny Carter

Self advocacy is where people with disabilities speak up for themselves.  This doesn’t need to be verbal communication the person can use other ways to communicate but communication is important to self advocacy. Self advocacy enables people to advocate for there rights needs and want they want explain to others what there rights are and enables people to stand up for their rights.
Continue reading “Self Advocacy- what is it and what’s happening to it”