Our Life Our CHOICE
Campaign update
WHAT
OUR LIFE OUR CHOICE
ARE DOING NOW.
- Gathering support and forging relationships with leading organisations in the learning disability and adult social care fields.
- Organising a conference for October 2024- "The Law, The Framework, The Choice, The Commission".
- We are gathering cross-party political support, and building relationships after the July General Election.
- Commissioning a 5 minute campaign film, that we look forward to sharing across various platforms.
Our Life Our CHOICE are organising a conference!
We are delighted to announce that we have been working hard to organise a conference for families, service users and professionals concerned about CHOICE and quality of services for adults with learning disabilities. - The Law, The Frameworks, The Choice, The Commission- scheduled to take place on the 24th of October at the Woburn House Conference Centre in London.
We have already confirmed esteemed speakers such as Professor Luke Clements, Paul de Savary, Humphrey Hawksley, Jane Raca MBE and our very own David Wilks. Dr Hilary Cass OBE is set to chair the event, so make sure you sign up to our newsletter here to get early bird access to tickets, released in September 2024.
Building a Coalition
Over the past 4 months, we have been actively engaging with various organizations and influential figures to build a coalition dedicated to our cause. I am delighted to announce that we have made significant strides in this regard.
We have had positive meetings with national organisations such as MENCAP, ARC, Voluntary Organisations Disability Group, Camphill MK and the National Care Forum. They have given us some valuable advice to further our mission, and we hope to continue to strengthen our relationships with them.
Additionally, we recently met with Nigel Evans MP, Deputy Speaker of the House, Damian Green MP, and Danny Kruger MP- all of whom have given us their support. Our discussions with Tim Hammersley, adviser to Andrew Gwynne, have also been fruitful, with him acknowledging that our campaign aligns closely with Labour's 'big picture.' However, now that the election has been announced, we have decided to focus more on reaching out to other organizations in the field to build our alliance.
Our Life Our CHOICE Film
Significant progress on the film we commissioned with Jude Allen is being made, with filming mostly complete and entering post-production stages. We look forward to sharing it upon completion and having it as a key resource for our campaign.
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
Our campaign has never been more necessary. In Autumn 2023, Hft- which runs the village community of Freeman Close, Walberton in West Sussex- gave their residents three months notice of eviction. Hft used the Care Quality Commission (CQC) guidelines on ‘campus and congregate’ settings as one of their justifications for this proposal. We supported the families at Hft West Sussex at Walberton but sadly the fight has been lost and almost all the residents have now moved out. A handful remain as their families face the near-impossible challenge of finding suitable alternative care and accommodation for their loved ones and face the distressing prospect of supporting them in leaving their homes.
Last year, we had four meetings with the CQC. We took the specific decision as an Action Group not to raise our campaign profile during these discussions. Unfortunately, these were neither productive nor fruitful, as you will see in our description of them below. So we are going to continue raise our campaign profile in 2024 – with a particular focus on building a coalition with national organisations, and the Department of Health and Social Care and the Minister of State for Social Care.
Thank you for all your support over this last year.
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.
Built with Shorthand