Our Life Our CHOICE
Campaign update
Our Life Our CHOICE House of Commons Campaign Launch – A Huge Success!
On Tuesday, 28th January 2025, Our Life Our CHOICE held its official Campaign Launch and Parliamentary Lobby in the Jubilee Room, Westminster Hall, and we are delighted to report that it was a resounding success. The event brought together MPs, families, care providers, and advocates who are united in their belief that adults with learning disabilities deserve real choice in where and how they live. The room was filled with powerful stories, expert insights, and an overwhelming sense of urgency for policy change.
Key Highlights from the Event:
✔️ Strong Political Support – We were pleased to welcome Sir Lindsay Hoyle, Danny Kruger, Brian Mathew, and other MPs who engaged in discussions about the barriers posed by current CQC policies. The Liberal Democrats have also expressed their support for our campaign.
🎬 Official Film Premiere – The event saw the debut of our campaign film, which powerfully captured the voices of families affected by restrictive policies and the urgent need for reform. The film was extremely well received, reinforcing the real-life impact of denied choice.
💬 Moving Testimonies – Families shared their personal experiences of losing care options due to restrictive regulations. Their stories highlighted the urgent need for policy change and made a strong case for why the government must act now.
📢 Commitment to Next Steps – We had productive discussions on forming a cross-party parliamentary group to push for change. MPs We want to strengthen our campaign politically, ensuring this issue remains firmly on the political agenda.
What’s Next?
The success of this launch is just the beginning. We are continuing to:
✅ Engage with MPs and policymakers to push for a change in CQC guidance.
✅ Expand our reach and connect with more families, professionals, and organisations to strengthen our collective voice.
✅ Prepare for our National Conference on 3rd April 2025, where we will take these discussions further.
WHAT
OUR LIFE OUR CHOICE
ARE DOING NOW.
Following the success of our House of Commons campaign launch, Our Life Our CHOICE is continuing to push forward with our mission to ensure adults with learning disabilities have real choice in where and how they live. Here’s what we’re working on right now:
✔️ Engaging with MPs and Policymakers – We are in discussions with key MPs to form a cross-party parliamentary group dedicated to addressing the restrictions imposed by CQC policy. We are also seeking further political backing to push for policy reform that recognises well-managed congregate care settings as a valid and necessary option.
✔️ Expanding Our Reach – We are reaching out to more families, professionals, and organisations to strengthen our campaign.
✔️ Driving Public Awareness – We continue to share campaign updates across social media.
✔️ Preparing for Our National Conference – With over 100 tickets already sold, we are finalising details for our National Conference on 3rd April 2025. This event will bring together experts, policymakers, and families to discuss the legal, social, and political challenges facing people with learning disabilities.
✔️ Petition & Public Pressure – We are refocusing our petition efforts to secure a meeting with Stephen Kinnock, ensuring the issue remains in front of decision-makers.
Tickets are selling fast for the Our Life Our CHOICE Conference!
Learning Disabilities: Challenges and CHOICES In Care and Accommodation
Our Life Our CHOICE is proud to announce our upcoming national conference, a vital event for families, service users, and professionals who are passionate about advocating for equitable care and true CHOICE for adults with learning disabilities.
The conference will be chaired by our patron, Baroness Hilary Cass, and will feature a distinguished panel of speakers renowned in their fields. This event has been designed by families with lived experience to explore critical issues surrounding care and accommodation for adults with learning disabilities, including legal frameworks, regulatory policies, and lived experiences.
Key Sessions Include:
- The Legal Framework:
A comprehensive overview of international and UK-specific rights for individuals with learning disabilities. - The CQC: The Rationale Behind the Policy:
An exploration of the Care Quality Commission’s role, responsibilities in regulating care settings, and the philosophies behind their stance on congregate settings. - A Choice-Based Approach to Social Care:
Insights from a care provider on how government policy impacts choice in care and accommodation. - The Academic Framework:
An analysis of the research shaping current policies and inspection reports. - Family Experiences:
Real-life accounts from families impacted by the closure of village communities and the lack of viable alternatives.
Engagement with the Care Quality Commission and Department of Health and Social Care.
As part of our ongoing efforts, we have submitted a formal letter to the CQC, directed to the Chair and newly appointed CEO, urging them to engage in a constructive dialogue with us. We are seeking open feedback from the CQC on ways to improve care policies and broaden options for people with learning disabilities
Expanding our Reach and Building a Coalition
We recently attended the Labour Party Conference, where we participated in fringe meetings and connected with other organisations focused on learning disability rights. These connections are helping us strengthen a coalition to amplify our message for systemic change.
In addition, we have commissioned new films, including a 5-minute personal story and a series of social media clips covering essential topics related to learning disabilities. These videos will be used across our platforms to raise awareness and advocate for choice and inclusion.
Our Life Our CHOICE Film
As mentioned above, significant progress on the film we commissioned with Jude Allen is being made, with filming completed and now entering the final post-production stages. We have also commissioned an additional 5- minute personal story from Jackie Cheesman and a series of social media clips. We look forward to sharing this with you across our website and various social media platforms.
We want to thank those involved in filming, who kindly gave up their time to talk to us about their experiences with Learning Disability and Village Communities.
From the Chair
The coming months are set to be incredibly busy and pivotal for the Our Life Our CHOICE campaign as we continue to build momentum. With our lobbying efforts to change government policy on congregate settings well underway, there are three key ways you can support us:
- Write to Your MP
Help us raise awareness by writing to your MP about our campaign. For a draft letter to make this easier, please contact our Campaign Officer, Katie Birch, at contact@ourlifeourchoice.co.uk. - Share Our Conference Details
Spread the word about our national conference on Thursday, 3rd April 2025, and share the link to purchase tickets with anyone who might be interested in attending. - Sign and Share Our Petition
Sign our petition here and encourage as many people as possible to do the same. Every signature brings us closer to tangible change.
With the events and initiatives we have planned, we are confident that we can begin making meaningful progress toward persuading the government to change its policy on congregate settings.
Thank you for your continued support of this campaign.
David Wilks, Chair
David Wilks, Chair
Recap
The Our Life Our CHOICE campaign was established when three communities specifically founded to care for vulnerable individuals with learning disabilities were only saved from closure by pressure from families and supporters.
Our aim
Our first objective has been to work with the CQC to modify one specific element of the Right Support, Right Care, Right Culture (2022) guidance which regulates care for people with learning disabilities and/or autism in England.
Right Support, Right Care, Right Culture stipulates:
‘We will only register and favourably rate services that … are in line with current best practice guidance and not be developed as new campus or congregate settings’.
That guidance has been used by care providers as a justification for closing village and intentional communities – despite those communities providing their residents with an excellent quality of life and which CQC inspections rate as good or outstanding.
‘We will only register and favourably rate services that…are in line with current best practice guidance and not be developed as new campus or congregate settings’
Meeting the CQC
We have had four meetings with the Care Quality Commission over the last 15 months.
Each meeting has been cordial, but so far, the meetings haven't been the opportunity for the productive discussions that we hoped.
Our first meeting – December 2022
We met a CQC team led by Debbie Ivanova, the Director for People with a Learning Disability and Autistic People Regulatory Leadership.
We had sent detailed information to the CQC in advance, but the CQC were predominately focussed on explaining how difficult it is to move people out of mental hospitals.
Agreed action points:
- The CQC team would review their recent inspection reports and the wording used in those reports and propose what reviews could look like in the future.
- The CQC team would provide the specific evidence underpinning the Right Support, Right Care, Right Culture guidelines on campus and congregate settings.
Our second meeting – February 2023
No progress had been made on the action points, but we had a more substantive discussion about how the guidelines have forced the closure of many communities.
The CQC team recognised that commissioners have become wary of asking for placements in village communities – often indicating the CQC guidance as the reason for the reluctance.
Furthermore, if an inspection report has the wording ‘is not best practice’ despite a favourable scoring on CQC criteria, that care and accommodation may not be commissioned.
Director for People with a Learning Disability and Autistic People Regulatory Leadership Deborah Ivanova said: “I think we can do something with that.”
The CQC agreed to come back to us within two months and we were optimistic about a positive amendment being made.
Setback
In late April, we received an email saying that the CQC was not prepared to review the guidance in Right Support, Right Care, Right Culture.
Meeting the CQC
We have had three meetings with the Care Quality Commission over the last 12 months.
Each meeting has been cordial, but so far, the meetings haven't been the opportunity for the productive discussions that we hoped.
Our first meeting – December 2022
We met a CQC team led by Debbie Ivanova, the Director for People with a Learning Disability and Autistic People Regulatory Leadership.
We had sent detailed information to the CQC in advance, but the CQC were predominately focussed on explaining how difficult it is to move people out of mental hospitals.
Agreed action points:
- The CQC team would review their recent inspection reports and the wording used in those reports and propose what reviews could look like in the future.
- The CQC team would provide the specific evidence underpinning the Right Support, Right Care, Right Culture guidelines on campus and congregate settings.
Our second meeting – February 2023
No progress had been made on the action points, but we had a more substantive discussion about how the guidelines have forced the closure of many communities.
The CQC team recognised that commissioners have become wary of asking for placements in village communities – often indicating the CQC guidance as the reason for the reluctance.
Furthermore, if an inspection report has the wording ‘is not best practice’ despite a favourable scoring on CQC criteria, that care and accommodation may not be commissioned.
Director for People with a Learning Disability and Autistic People Regulatory Leadership Deborah Ivanova said: “I think we can do something with that.”
The CQC agreed to come back to us within two months and we were optimistic about a positive amendment being made.
Setback
In late April, we received an email saying that the CQC was not prepared to review the guidance in Right Support, Right Care, Right Culture.
Our three questions for the CQC
Before our third meeting, we sent a letter to the CQC asking for answers to three specific questions:
What is the evidence you have gathered and relied upon that justifies your condemnation of congregate settings like Stanley Grange?
[Stanley Grange was one of the communities saved from closure by family action.]
Where do we find the details of what is regarded as ‘national best practice’ and the ‘best practice principles’? Are they in a specific document that can be sent to us? If not, how can we, or providers and local authorities find the details?
Why congregate settings such as Stanley Grange and other former ‘village communities’ – which continue to provide excellent care and accommodation – are not regarded as being in accordance with 'best practice guidance/principles'?
Our third meeting – September 2023
The meeting was led by Rebecca Bauers, the Interim Director following Debbie Ivanova’s retirement.
Sadly, we didn't get any detailed answers from the CQC team to our three questions and the key terms ‘campus’ and 'congregate’ weren't mentioned at all. But the CQC team did confirm, at the very end of the meeting, the academic studies and other policy guidelines used to justify the statements in Right Support, Right Care, Right Culture.
Our third meeting – September 2023
The meeting was led by Rebecca Bauers, the Interim Director following Debbie Ivanova’s retirement.
Sadly, we didn't get any detailed answers from the CQC team to our three questions and the key terms ‘campus’ and 'congregate’ weren't mentioned at all. But the CQC team did confirm, at the very end of the meeting, the academic studies and other policy guidelines used to justify the statements in Right Support, Right Care, Right Culture.
Analysis
We have read and analysed all of the documents and materials:
- 17 policy documents and studies that the CQC references in Right Support, Right Care, Right Culture.
- Registering the Right Support (published in 2017 and specifically referred to in Right Support, Right Care, Right Culture).
- 27 policy documents and academic studies referenced by Registering the Right Support.
One size rarely fits all
Reading the documents, it is clear that these guidelines were developed specifically for a small proportion of people who have a learning disability and/or autism with 'behaviour that challenges'.
This is the population who live in institutional mental hospitals (representing approximately 10–15% of people with a learning disability and/or autism).
These guidelines, when they were written, were never intended to be used as guidelines and statutory regulations for the majority of people with a learning disability and/or autism.
We found no justification for the statements about campus and congregate settings for people with learning disabilities and/or autism and without 'behaviour that challenges'.
Benefits of village and intentional communities
There is a wealth of other evidence – both academic studies and even the CQC’s inspection reports – which demonstrate that village and intentional communities provide a better quality of life, care and support for some people than any other type of care available.
We have written a twelve-page summary of our analysis which is available on our website.
Next Step with the CQC
We wrote to the Chair of the CQC, Ian Dilks, sending him a copy of this analysis.
We asked him to use his good offices to help ensure that at our fourth meeting on 18 December 2023, we had a more productive dialogue than at our previous three meetings.
We asked him to focus on the following;
- How can the CQC maintain an ideological position on the size of residential services for the majority of people with a learning disability and/or autism given that we have now established that there is no evidence to support this?
- What evidence would the CQC consider sufficient to enable them to alter their position so that a full range of well-regulated residential choices (including village and intentional communities) becomes an option for all people with a learning disability and/or autism?
Our fourth meeting with the CQC - December 18th 2023
In this meeting, we met again with Rebecca Bauers and Jeanette Blackburn, Head of Policy. They told us that they were not prepared to change anything, because 'no other people we talk to and no providers or commissioners have asked for these changes'.
This has meant that we are now planning to take the next step to move our campaign onto the national stage and specifically focus it on politicians. At the same time, we will be trying to create a much broader coalition to support us.
Next Steps for the Campaign - February 2024
- We are seeking a meeting with the Minister of State for Social Care.
- We are seeking the support of shadow social care spokespeople.
- We are seeking the support of MPs.
- We will be organising a lobby of Parliament.
- We will be organising a major conference in October.
- We will be reenergising our petition.
- We will be creating links and partnerships with other organisations.
In many of these activities we will be asking for the involvement of our supporters.
Research
Local Authorities and Freedom of Information Requests
Over the last few months, we have also sent Freedom of Information Requests to all Local Authorities in England. We have learnt a lot about how best to phrase these requests, which will serve us well in the future.
The replies have been mixed. Over half of the authorities said that they would decide where someone should live based on their assessed needs and what was in their best interests. Three local authorities said that they would not rule out congregate settings.
Sadly, a significant number of local authorities specifically ruled out congregate settings and quoted the CQC guidelines as the reason.
Research
Local Authorities and Freedom of Information Requests
Over the last few months, we have also sent Freedom of Information Requests to all Local Authorities in England. We have learnt a lot about how best to phrase these requests, which will serve us well in the future.
The replies have been mixed. Over half of the authorities said that they would decide where someone should live based on their assessed needs and what was in their best interests. Three local authorities said that they would not rule out congregate settings.
Sadly, a significant number of local authorities specifically ruled out congregate settings and quoted the CQC guidelines as the reason.
King's Counsel Opinion
We instructed Counsel to consider the merits of a legal challenge to the Right Support, Right Care, Right Culture guidance and/or the decision in the email from the CQC to Our Life Our CHOICE dated 28 April not to review that guidance.
We recognised that it may require a more specific ‘decision’ to challenge, such as the refusal of an application, although the Campaign would like to act more quickly than that if possible.
We also sought counsel’s opinion on some specific aspects of the Care Act and other regulations to determine whether there might be an opportunity for judicial review.
Counsel’s opinion was that it would be financially very expensive for the campaign itself to seek a judicial review – unless we found an appropriate claimant eligible for legal aid.
Eligibility for legal aid is critical since – not only would this cover the claimant’s legal costs – but it also provides protection from having to pay the CQC’s costs if the claim were to fail.
Various claimant profiles might work:
A disabled individual who requests (or whose family requests on their behalf) placement at a particular congregate setting, which is then refused by the local authority on the basis that the arrangement is not best practice.
A disabled individual who is currently placed in a congregate setting where a decision has been made to stop commissioning the placement and/or close the placement based on the CQC guidance. Ideally, any decision to close would be made by the local authority rather than the private care home provider.
With this advice, we are now ready to initiate a challenge if we can find an eligible individual who meets the criteria.
King's Counsel Opinion
We instructed Counsel to consider the merits of a legal challenge to the Right Support, Right Care, Right Culture guidance and/or the decision in the email from the CQC to Our Life Our CHOICE dated 28 April not to review that guidance.
We recognised that it may require a more specific ‘decision’ to challenge, such as the refusal of an application, although the Campaign would like to act more quickly than that if possible.
We also sought counsel’s opinion on some specific aspects of the Care Act and other regulations to determine whether there might be an opportunity for judicial review.
Counsel’s opinion was that it would be financially very expensive for the campaign itself to seek a judicial review – unless we found an appropriate claimant eligible for legal aid.
Eligibility for legal aid is critical since – not only would this cover the claimant’s legal costs – but it also provides protection from having to pay the CQC’s costs if the claim were to fail.
Various claimant profiles might work:
A disabled individual who requests (or whose family requests on their behalf) placement at a particular congregate setting, which is then refused by the local authority on the basis that the arrangement is not best practice.
A disabled individual who is currently placed in a congregate setting where a decision has been made to stop commissioning the placement and/or close the placement based on the CQC guidance. Ideally, any decision to close would be made by the local authority rather than the private care home provider.
With this advice, we are now ready to initiate a challenge if we can find an eligible individual who meets the criteria.
Other updates
Academic research
We have been heartened by the support of distinguished academics like Professor Luke Clements and Professor Martin Knapp. We are currently in discussions as to whether a university will initiate a research project to review the outcomes for people with a learning disability and/or autism in different forms of care and especially look at the quality of life outcomes for those who live in village communities.
Fundraising and our generous donors
We are very grateful for the generosity of those who are financially supporting our campaign – without whom none of this would have been possible. Those contributions have enabled us to employ a part-time Campaign Officer for two days a week and to fund the cost of getting a King’s Counsel opinion.
Website updates
We have improved and developed our website.
Supporters
We are grateful to the professionals working in the field of learning disabilities and/or autism who have given us the benefit of their advice and wise counsel over the last year. Most of our team are relatives of people whose communities faced closure. We have lived experience but having the knowledge and experience of those who work in this environment has been immensely helpful and appreciated.
Molly Turner
Molly, our Campaign Officer for nearly a year, has completed her postgraduate studies at University College London and has a new full-time position in the Charity sector. We thank her for her brilliant contribution to our work; she’s done a great job supporting the Action Group and helping the campaign progress. We are delighted that she’s got such an exciting new role, and we wish her every success.
New Campaign Officer: Katie Birch
Molly has been succeeded by Katie Birch as our Campaign Officer. We are absolutely delighted that she joined our team in the middle of February 2024.
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