#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”