The Things They Say

There are lots of reasons why the right community care and support for people with learning disabilities and autistic people just isn’t there.

One of those reasons is the huge power imbalance that exists between professionals and people and families.

We asked our community to give us examples of statements professionals have made to them and put them in a video.

It’s very telling…watch by clicking on the link.

Click here to watch the video




Stolen Lives Wales

If you want to support the Stolen Lives Wales protest on April 17th but cannot attend, please share a photo of yourself holding one or both of the posters below on social media using the hashtag  #StolenLivesWales. If we get enough photos, we will make a video to keep raising awareness. You can also email your photo to

Thank you and diolch yn fawr!

Download link below

Poster in English

Download link below

Poster in Welsh







What Are They Really Counting?

What are they really counting?

Why is everyone so focussed on the numbers of autistic people and people with learning disabilities stuck in hospitals?

What does this actually tell us…if anything?

Often the reason why our people are detained is because they are in a totally inappropriate situation or environment where they are being failed. Poor quality, insufficient or non existent care and support is at the heart of that failure. If people get out of hospital, it will be timely, agile, safe and supportive community care that will prevent them from being readmitted. Fundamentally, what is wrong starts in the community and ends in the community.

So why is everybody so focussed on the number of people in hospital? Why is this number the measurement of the success – and failure – of Building the Right Support?

In our video we look at other ways of measuring success. Maybe it’s time to change the focus?

Click on the link below to watch.


What Good Looks Like

There are so many reports and reviews about ‘what good looks like’ for autistic people and people with learning disabilities. We think this might be one way of looking at it.


#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…

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

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

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







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
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
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