Angela Walker In Conversation - Inspirational Interviews, Under-Reported News
For news lovers everywhere. Join former BBC reporter and broadcast journalist Angela Walker as she engages in thought-provoking conversations with inspirational individuals about current affairs and under-reported issues. We examine stories mainstream media don’t cover: issues of social justice and campaigns that aim to improve society and the world we live in. We look at issues around government, climate change, the environment and world around us. In this podcast, we aim to shed light on important topics that often go unnoticed, providing a platform for insightful discussions with our guests.
From activists and social entrepreneurs to academics and community leaders, these individuals bring their expertise and experiences to the table. Through their stories, we explore the challenges they have overcome, their motivations, and the lessons they have learned along the way. We examine issues of social justice and campaigns that aim to improve society and the world we live in.
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Angela Walker In Conversation - Inspirational Interviews, Under-Reported News
FORCED OUT: Learning Disabled Adults Demand More Housing Rights with Ron Brown from Our Life, Our Choice
Adults with learning difficulties are being moved out of their homes against their wills - with some ending up in secure accommodation.
Around forty "villages" have been shut down over the past few years and many residents face problems finding suitable housing.
Campaigners say adults with learning difficulties and their families are not being listened to.
In this conversation, journalist Angela Walker speaks with Ron Brown from the charity Our Life, Our Choice about the pressing need for more choice and better accommodation options for adults with learning disabilities.
They discuss the challenges faced by individuals in finding suitable living arrangements, the role of regulatory bodies, and the importance of advocacy and community involvement in ensuring that the voices of those affected are heard.
Music credit: Moment of Inspiration by Purple Planet Music
https://ourlifeourchoice.co.uk/
Hi listener. I thought you might enjoy Don Anderson's podcast. Missing Pieces - NPE Life is a podcast that curates stories of and about people who find out, usually through a home DNA test, that someone in their family tree isn't who they thought. They also tell stories of adoptees who've found lost family, or are looking. The host, Don Anderson, found out in 2021 that his dad wasn't his dad. It changed his life. NPE stands for Not Parent Expected or Non Paternity Event.
https://www.angelawalkerreports.com/
Adults with learning disabilities and their families are demanding more choice when it comes to their care and accommodation. Some say the professionals who are meant to help them are not taking their concerns seriously enough. I'm journalist Angela Walker, and in this podcast, I talk to inspirational people and discuss underreported issues. Today, my guest is Ron Brown from the charity Our Life, our Choice. Thanks for joining us, ron. First of all, tell me about Our Life, our Choice. Tell us about this organisation.
Ron Brown, Our Life Our Choice:Hi, Angela, thank you for having me on. It's a small, independent charity, campaigning charity. It grew, it's grown organically, really. The founders or drivers behind it were co-chairs of a charity that was called rescare, which focused on families. Uh, anita bennett and dr katie booth noticed that they were having contacts with families who were finding that what we might call village settings were coming under threat of closure and, in fact, the residents who had lived there for many years in some cases decades were effectively being presented with no-win options where they would have to leave. They were effectively forced addictions and that obviously caused consternation. Once this was an obvious pattern, they were insightful enough to start to focus on that and from that, effectively, our Life, our Choice, was born. I'm so privileged to be involved. There's just people on there that are just unbelievable, unbelievably talented, unbelievably committed to people with a learning disability, working age adults with a learning disability, working age adults with a learning disability getting a fair shake really let's talk about these villages that you mentioned.
Angela Walker:Um, what exactly are they and how do they benefit adults with learning disabilities?
Ron Brown, Our Life Our Choice:well, the there's there's been some confusion about different terms. So villages, congregate settings, intentional communities, shared lives, shared living, there's kind of not been a clear-sighted view of the differences between them, what they each individually mean mean. But what we mean by villages are places where people live, where they live in in a way that they share an environment they would have separate accommodation in, usually in small group, home type arrangements, and it's important to remember that there'll be good villages as well as bad villages. That's about the care that's supplied and that, and that's a sensible and sound judgment. But to say per se that these individual villages are bad, we take issue with that, and we take issue with that for a number of reasons. Those villages villages might supply some activities, some work, some socialising events, but also, obviously, if they're run well, should reach into the community.
Angela Walker:What is the impact on a person who's been living happily in one of these village situations if that shuts down and they have to move?
Ron Brown, Our Life Our Choice:Well how I'd answer that. Angela, I'm not sure how long you've lived in your house, but suppose I told you you had to move. You couldn't see any of the people you've been living with, necessarily, but that was a possibility, and that you would go maybe many miles away and that it would disrupt your whole life, your social life, your work life, your, uh, people. You've been in contact with you this many people who you loved you may never see again. What impact would that have? Now, on top of that, add an intellectual impairment, uh, you know a learning disability, and you know, inevitably you would have to process emotions, difficulties. I mean, it would just be horrendous, wouldn't it.
Angela Walker:It would just be horrendous. Well, we know that moving house for any of us can be one of the most stressful things. So if it's against someone's will, we can only imagine. And the CQC says human rights and people's needs and preferences are at the heart of our registration decisions and inspection judgments. Human rights and people's needs are the heart. Do you think that's right?
Ron Brown, Our Life Our Choice:Listen, I think they believe that's right. I think it's probably right. I mean, there's a lot in right support, right care, right culture that I think is commendable, is fantastic. Like I say, I just think they've made certainly. So let's look at different levels that's the theory that's the theory of it, isn't it.
Angela Walker:They're saying that human rights and people's needs and preferences are at the heart of what they do, but is that what we're seeing in practice?
Ron Brown, Our Life Our Choice:well, I would. I would say there's certainly a case to answer in terms of villages. I think there's certainly a case to answer in terms of increasing the menu of choices and I would say there's certainly a case to answer in that particular document around outcomes. I quite agree with what they're saying, but I think the implementation of it and there's some structural reasons why it won't be implemented unless there's uh, um, you know, specific changes, certainly to some of the guidance in the document. But, um, the you know, I just think they've got it wrong on the evidence with villages. I just think they've conflated um very challenging, inhumane environments with village life. Some, some villages are good, some villages are bad. If the village is not providing good care, usually a change of personnel and leadership sorts that out. It seems very, very drastic to use that as an opportunity to close a village. Really.
Angela Walker:Is it like supported communal living for adults with learning disabilities? Is that the kind of setting that you're talking about?
Ron Brown, Our Life Our Choice:their historical roots tend to be that parents have started them when they haven't had any other options and they've developed and evolved the certainly the better ones. Where they provide, you know, they provide care options for people who really can't find very good care options elsewhere. We're not talking about everyone of working age learning disability this being suitable for, but certainly for a small number who are highly vulnerable, maybe even highly challenging, they offer a really good option for some families some of the time and it's it's in our view it's probably incorrect to take a view um that they are an option that families and people with a learning disability of working age shouldn't have, certainly people who live there now and have lived there for decades. It's cruel to forcibly hit them.
Angela Walker:So what problems are people with learning disabilities facing when it comes to accommodation? And we're talking about adults with learning disabilities, aren't we?
Ron Brown, Our Life Our Choice:The issues with learning, with accommodation in relation to people with learning disabilities, who have, who have eligible care needs, who have needs particularly higher needs, higher level needs, who are more vulnerable, is that accommodation very often is linked to care. It's difficult to consider one without the other. We know that the regulator would, would not register a village-type offer. Now we know that there's a bit of a pincer movement taking place so that the CQC's attitude, that's the regulator, and the attitude of many commissioners in local authorities is such that for some we've conducted freedom of information requests, for some commissioners wouldn't consider placing someone in a village setting, even if they agreed that was, you know, suitable for their needs. Other commissioners not quite as as hardcore as that. There's also a ratchet effect because you know as inevitable, any care facility, care accommodation with long-term, which has been going long-term, will go through peaks and troughs. Sometimes there'll be good leadership, sometimes there'll be not so good leadership. When there's not so good leadership and the care dips, then it's very easy to say well, you know, that's a village, that's why the cares dipped, um, that that's entirely untrue. You know, the difference between a good care facility and a bad care facility in a village is the same as any other care facility. It's about whether the leadership's in place can put the right culture in place, the right staffing to deliver.
Ron Brown, Our Life Our Choice:So our best guess is that we maybe lost 40 villages over the last 20 years. And we also know that the new ones are not being registered, even if parents want them registered. We also know they're very, very popular with parents who have them. They're very popular with service users. You know literally what would it be like if you lived somewhere for 30 or 40 years, were quite happy and then were told that you had to leave. The only justification for it would be if there's an evidence base.
Ron Brown, Our Life Our Choice:You know I'm a great believer in evidence-based practice. If, if there's an evidence base which which says, you know, villages are inherently bad. Well, actually, we've met CQC on two or three occasions and we've asked them can they share the evidence with us? What we think has happened is that there has been a kind of conflation of two or three different concepts which has meant that villages are perceived in an entirely negative light. Really, we know that a number of working age adults with learning disabilities where their behaviours are, to kind of coin the jargon challenging that they have been in assessment and treatment units that they're not something we would support, we would agree they are congruent settings. We've got about 2 000 people in this country in those settings. They've not committed any crime, they're in secure accommodation and some of them very, very sadly, for many years and they haven't got options to move. Villages are not like that, villages are not that and there's been a conflation in our view of those two concepts.
Angela Walker:I mean, it stands to reason that if someone who is susceptible to challenging behaviour is in a living situation where they're not happy that their behaviour could become erratic could become erratic, what reason is being given then for shutting down these villages? And where then, are the residents being moved to?
Ron Brown, Our Life Our Choice:We've met the regulator. We've given them the opportunity to share the evidence with us. No evidence has been produced to justify this position and I have seen for myself. For instance, I once had responsibility for quite a large village, not directly, the person running it was very good, um reported to me and um there was a a house there for people with very challenging behavior and it it got an outstanding award by cqc. You know there was an inspector who looked at it, who, who was professionally very grounded, knew that, knew the subject area and recognized the outcomes were outstanding. So there's at least a contest about the evidence base but it's not been shared with us in the cqc document that I've got here.
Angela Walker:Right support, right care, right culture, they say. For people with a learning disability and behaviour that may challenge NICE guidance recommends people should have the option to live alone with appropriate support if they prefer this and it's suitable for them. If adults prefer not to live alone with support or it's not suitable for them, offer them the option of living with a small number of people in shared housing that has a small scale, domestic feel. Involve people in choosing how many people and who they live with. But then it does go on to say, um, while we continue to refer to nice guidance in describing what small means for how we apply our approach. You want to be clear. This is not the same as having an upper limit for the size of services. So they're saying that people should be given the option of living in a smaller, more like house type setting. Is that the kind of thing that you are campaigning for, ron?
Ron Brown, Our Life Our Choice:No, no, not really. I wouldn't have a problem with what they said there. If you notice, that's linked specifically to people who might have challenging behaviour. That's fair enough. Our view is about choice. It's not about restricting choice, really, unless there's evidence which says one type of uh provision is, you know, is is uh problematic in itself. So we, we want choice, we, obviously, if people want to live like that and it and it's good for them, then then that's great. There's no problem at all with that.
Ron Brown, Our Life Our Choice:What what I would push back on is is slightly this narrative that you know, know, everyone with a learning disability of working age will be able to live somehow in their own independent flat or, you know, small accommodation in the community. I've worked in the community. You know a lot of the time they're not free choices. People are vulnerable. Cuckooing that takes place in urban areas is, you know, is a real problem. Local criminals, usually drug dealers, might target someone with a learning disability who lives on their own, might receive some level of care and support and they'll use that facility as a base for their criminal activities. And also the treatment of the learning disabled person who might at first view these people as friends is is poorly. You know, the idea that people with a learning disability are not often living very isolated, very vulnerable, very lonely lives is quite different to the narrative that's presented. Also, what I would say to you is that in supported living examples which I think is what that's alluded to, what we'd call supported living one of the one of the issues with that is I've seen tenancy agreements where they've been signed with a cross. You know, I've seen tenancy agreements where people agree for the person with a learning disability. And I've certainly seen a number of people with a learning disability who have tenancy agreements who would have no idea what a tenancy agreement is, what that tenancy agreement means. And again, I'm not against that. I think it's a great thing for the vast majority of people. With the right support, that will work well.
Ron Brown, Our Life Our Choice:But there are people, two categories one where they've lived on a village for a very long time 10, 10 years or more very different to emptying what used to be called the old style psyche bins, which were appalling, you know, were terrible. I've seen people moved out of those and they've done very well, particularly where they've moved into housing in the community with the staff that they were used to over the years by this kind of um, this kind of uh ratchet effect and um, uh pincer movement. It is is not the right thing to do. It's not the right thing to do for people who live there and it's not the right thing to do as an option for new people who might join that.
Ron Brown, Our Life Our Choice:I worked for an organization and one of the things that struck me, it did have a village and you know, over the years the village had good reputation, bad reputation, depending on the leadership in place and the quality of care provided over time. What struck me was, in my time, which I found increasingly difficult, I was the director of care there and I turned down 14 families who would have been ideal for that village, 14 who then went off and got effectively substandard care. Um, you know, it ought to be a matter of choice. So what? What we want to do at our life our our choice. We want to for villages to be treated fairly that exist.
Ron Brown, Our Life Our Choice:We want what I would call the care environment to be judged is it suitable? Is it suitable for the outcomes that are being claimed and is it something that, frankly, parents and families and the people with learning disabilities themselves themselves, they are all supportive of, and if you've got 95 percent of people at a facility that are supportive of it, that are living great lives, there's great outcomes. You know it really. It really beggars belief that new initiatives that might do the same are automatically off the table tell me more about the res care petition shall I read you it.
Ron Brown, Our Life Our Choice:It's very, it's very short okay so we call on the cqc to amend their current guidelines so that all people with learning disabilities and or autism have the same fundamental human right to choose where they live and receive care according to their individually assessed needs, as does everyone else. Well managed and regulated group and village communities should be considered equally, alongside small urban and rural residential living, supported living and independent living. So we we just we want to expand choice and we want the nature we've got the nature of the sector or market to be determined by the people who use it, rather than to be overly prescribed top down.
Angela Walker:So tell me, ron, what happens in a family situation where there's an adult child and they're looking for somewhere suitable to live. You're saying that there's not really a great deal of choice. What's the process? What are the options available to somebody like that?
Ron Brown, Our Life Our Choice:The first port of call would be an assessment of eligibility. So they'd apply to their local council Probably they're already known as a child. They'd apply. There'd be an eligibility criteria. They would then be judged to be eligible on on a scale you know, very high needs, medium needs, low needs, and then at that point, having received their eligibility, um, they would. They would get a determination which the family would, um, would the person with the learning disability if they, if they had full capacity, would sign off and if not, if someone had legal rights or parent would would kind of sign it off as accepting that determination. Of course, the reality is the end point. Uh, if the getting those needs met in a way that is suitable for the person with a learning disability, for the family is about having different options available, really, because the reality is, if the sector's driving homogeneity, it doesn't really matter what you would prefer, you'll be stuck with the homogeneity.
Angela Walker:So in that situation, say the person's had their needs assessed and they are eligible, what options would typically be presented to them?
Ron Brown, Our Life Our Choice:I would say unstated preference in local authorities for what we call supported living in the community, which is what we talked about earlier. There's a number of reasons for that. One one narrative to the stuff you've read from CQC earlier, but also how budgets operate, you know. So it's uh. One of the things we'd like, as as as as a campaign, is for real costs to be looked at. You know, transaction costs, costs.
Ron Brown, Our Life Our Choice:One of the incentives for local authority to push certain types of, um, certain types of care is that one type of care supported living in the community in a small setting doesn't, isn't fully funded by the local authority. Some of it's met as housing need and that housing need basically local authority claims and passports out, so it doesn't hit their budgets. I mean, the bottom line is that there's a way that individual budget holders can defray costs of care. We've already spoken how accommodation care is linked effectively for a lot of these people. They can defray costs on hits to their budget by effectively having outcomes which prefer a certain type of care. Now that's a perverse incentive. It seems to me contrary to meeting eligible needs, but also, I think, in terms of value for the taxpayer. It's a mistake because you know. So let's say, for example, in well-run care, unplanned calls on health service, emergency situations, certainly admissions to very rigid regimes like the assessment and treatment units would be diminished.
Ron Brown, Our Life Our Choice:We know that if people are happy, they're more likely to stay well for longer. Aren't they Going back to the? To the people that challenge type situations? What? What often will happen in those situations if they have inadequate care? The end of their care journey is in a highly restricted environment that they're usually admitted to on a short term for an assessment, but in reality many of them don't get out for years and years and years, if at all. Can I just read you one thing from someone who signed our petition and it really did strike me this. Uh, I won't say her name, but if if people visit our petition, they'll see my son has autism spectrum disorder and has already been through the stress of being uprooted once from his care home. It brings huge stress to families in having to find another placement. Freedom of choice is vital without over prescriptive parameters, and I think that sums up where we're at really, and that's what we hear from parents all the time and families and people with a learning disability themselves.
Angela Walker:Why do you think people with learning disabilities and their families are not being heard when they're asking for this choice?
Ron Brown, Our Life Our Choice:I think there's a number of reasons. We've talked about the pincer movement, the ratchet effect. If one looks at stakeholders, just analyzes stakeholders powerful stakeholders, professionals, their professional associations, I would say certainly large corporates, private equity funds, private equity funds I'm not against um uh, private supply, by the way, but far from it, I think it's. It does wonderful things at times. But it's clear that in this, in, in any analysis of stakeholders families and people with a learning disability themselves, despite whatever rhetoric, despite whatever jargon is used, it's obvious that their power, if you like, their ability to influence, is much less than other stakeholders. And you know that can't be right really.
Angela Walker:Are you saying, ron, that the client um, if you will, um? The needs of the client are not being met because the needs of the other stakeholders are taking priority I think that's worth looking at.
Ron Brown, Our Life Our Choice:I don't think that's the only thing I mean. There's obviously, where accommodation is concerned, there's huge barriers to entry to to the market.
Angela Walker:Well, let me put it this way surely, in this situation, when we're talking about housing for adults with a learning disability, their needs and preferences should be number one, the top consideration. It should trump everything else, because we're talking about their health and well-being. Do you think that patients, clients however you would like to to think of them adults with learning disabilities who need housing, do you think that they are being treated as the priority in this system for housing?
Ron Brown, Our Life Our Choice:I would say not. But I would add one proviso to what you're saying. I think it's fair and reasonable to restrict choice where we know evidentially that that particular choice is actively harmful or dangerous. And also I'd add another caveat, and that would be around safety. So I think it's fair and proportionate and reasonable. But outside of that, I do think empowering people with a learning disability of working age, their families and also, by the way, natural communities and their communities, empowering them to come up with their own solutions that they choose, that's entirely different to funding which we've talked about. In terms of the assessment, of course, eligibility and funding is a matter for the state. That's determined by whoever takes a view of what we as a society regard as eligible, regard as fair for funding. After that, yes, I do think that people with a learning disability, their families and communities should be much more significant stakeholders than they are.
Angela Walker:How much of an impact do you think suitable accommodation can have on the overall well-being and lifestyle of an adult who's got some learning disabilities?
Ron Brown, Our Life Our Choice:Let's look at the ATUs that we mentioned 2,000 people in this country are being helped so remind, reminds us what ATU is. They're assessment and treatment units, so they're usually some level of secure accommodation where over 2,000 people in this country are detained without having committed no crime, without any real prospect of leaving, and many of them and I think if we opened up the sector in the market to more innovation, more creativity, was more choice-led I think we'd empty those.
Angela Walker:Wow. So you think that people are being kept against their will, would you say?
Ron Brown, Our Life Our Choice:Well, as often with these things, there are legal processes in place which would lead you to believe that it's in those people's best interest to be kept there. But but of course you can't. You can't divorce that from what. What realistic options are available? And with realistic options, uh, with a sector or market that was incentivized for creativity, choice? I have no doubt in my mind, having worked in the sector for well over 30, I'm admitting to 30, but it's a bit more than that years that they would be emptied.
Ron Brown, Our Life Our Choice:And they would be emptied for better care environments and, if you want my honest opinion, I think the value to the taxpayer would be higher.
Angela Walker:So do you think that people are being kept in secure units, some of them unnecessarily, when they might be better suited to some kind of independent living accommodation? For financial reasons.
Ron Brown, Our Life Our Choice:I wouldn't say independent living accommodation, I wouldn't use that term but if other care options were available, would they be better placed at better value for the taxpayer? Yes, they would and you wouldn't have to go. You wouldn't have to go very far, angela, to find families whose adult children were in those environments where the families had, you know, incredibly difficult, difficult time where people were admitted ostensibly for a short term and many, many years later are still there gosh, I would have to catch up with some of those families.
Angela Walker:I'd really like to talk to them. Um, how can people get their voices heard, then, ron?
Ron Brown, Our Life Our Choice:I would ask people to look at signing our petition. I would ask people to visit our website. I would ask people to look out for stuff. We've got a conference coming up in April where that's an opportunity. Please encourage your political representatives to go. You know, this is one of the great injustices of our age. So the website address is our life, our choice. Dot, co dot.
Angela Walker:Uk perfect what, ron? Thank you so much for coming on and telling us about your campaign. I look forward to hearing about the conference as well. And thank you so much for coming on and telling us about your campaign. I look forward to hearing about the conference as well.
Ron Brown, Our Life Our Choice:Thank you very much. Thank you, Angela. I really appreciate the opportunity. So so good of you, so grateful. Thank you.
Angela Walker:Thank you, you're welcome. You've been listening to Angela Walker in Conversation. Thank you so much for joining us. I hope you've enjoyed the show. Please do share it with other people who might be interested, and you can find more stories like this and more podcasts on my website, angelawalkerreportscom. Until next time, take care.
