The right to an independent life

Post from Alice Maynard, Chair of Scope

AliceDisabled people want to live independently in their community. We want to decide where we live, who we live with and how we go about our day.

In 2013, I think – I hope – most people would back that aspiration.

Unfortunately too often this doesn’t reflect the reality of disabled people’s lives, and this autumn we’re doing something about it.

Firstly, we’re going to be calling on the Government to be bold when it comes to reforming social care.

The current system is on its knees. The London School of Economics estimates that 69,000 disabled people who need support to live independently don’t get any. While, 40% of those lucky enough to get some support say it doesn’t meet basic needs like getting up, getting washed and dressed and getting out of the house. Yet Government plans, which will be debated by the Lords on 9 October, will shut 100,000 people out of the system altogether.

But if we want a bold response from the Government, we have to do more than shout from the sidelines. We have to show what’s possible by taking difficult decisions.

For example, we run care homes. We’ve taken a long, hard look at them all, and asked ourselves if they do enough to support disabled people to live independently in the community.

Staff do a great job, but many homes were opened in the 1970s, aren’t located in the heart of the community and are simply not set up to offer disabled people enough choice and control over their lives.

In the last five years, Scope has changed or closed ten of these services. We’re now proposing to change or close more over the next three years.

It’s the right thing to do. But it’s important we do it in the right way.

We tell the people most directly affected first, and before making a decision on a home, we consult with the people who live there, their families, staff and local authorities.

When we do change or close care homes, we will always do this sensitively and respectfully, supporting everyone affected by the changes to understand what they mean and what choices are available to them.

It’s very easy to demand that the Government makes difficult decisions. It’s much harder to make them yourself. Disabled people want to have choice and control over where and how they live. We think it’s right that the services we offer them make that possible.

33 thoughts on “The right to an independent life”

  1. We tell the people most directly affected first, and before making a decision on a home, we consult with the people who live there, their families, staff and local authorities.

    There has been NO consultation on the closure, we have been informed by way of a telephone call and then a letter the following day. Where was the consulation??

    1. Hi Annette, We didn’t want to cause unnecessary anxiety by talking to people before agreeing our proposals. Now we have agreed and announced the proposals, we will talk to people about them and, in due course, consult everyone affected before making decisions about each home.

      1. As family members of a scope service user at Drummonds in Feering, Colchester we can only express our devastation at receiving a letter that has potentially ended the longest period of peace mind, safety and sense of security for both our 51yr old relative and us as her family. Just who is it that actually says places like Drummonds have no place in the current social care world? Maybe it is outdated in design but its’ philosophy and all encompassing care to include on-site day services, has to be one of the best provisions to meet the holositic needs of people with profound disabilities. We are not talking about people who have just a level of physical disability and have accessed mainstream schools and 21st century technology and equipment, which would raise people’s expectations for more than perhaps Drummonds environment does offer currently. The reality is we are talking about 40 people who are predominately 40+ yrs of age whom at best have had sporadic institutionalised schools and institutionalised care provision and rightly or wrongly, have become habitualised and happy with having a familiar environment with staff whom seek to meet their physical and psychological needs to a very level. It is true that younger profoundly disabled people will thankfully have a different life experience and options. We cannot allow people who really do not have a full appreciation of all that it means to be profoundly disabled, set the norms for those who are and for who change at this stage of their lives could have catastrophic implications both for them and indeed many of their parents/relatives who are aged or infirm themselves. Scope’s ‘vision and values’ espouses the virtues of freedom of choice etc, but in fact the letter advising of the potential closure of 11homes feels to the most abhorrent and appalling case of disempowerment of the 40+ profoundly disabled age group that this country has witnessed in a long time. Creative planning to include part selling of large parts of land to income generate for new builds on existing sites to embrace true ‘inclusion’ would not appear a difficult concept to consider or indeed implement if the powers that be truly communicate and attempt to hear the voices of those whom this decision will ultimately destroy.

        The reality of having written to service users and their families is that a lot of the people are unable to verbally communicate and have aged parents for whom the news will have caused such distress at such a crucial time in their own lives. Our relative is 51. Her mother is 86 and when advised of the news that her daughter will likely lose her home, her response was, “I just don’t know what to say, I thought I would go to my grave, content that I knew ‘x’ was safe and had a home for life, I can’t think what to do, can you?

        Please Scope, redevelop Drummonds, do a core and cluster bungalow arrangement with small bungalows around a day centre type provision and sell part of the land to fund and have builders building homes for ‘ordinary people alongside homes for our very special people’, surely that has to be the true meaning of inclusion?

        We cannot let Drummonds go as the potential devastation on so many lives is just too great. To consider that 40 people can move out into individualised living is just not realistic on so many levels and personal budgets just do not provide the freedom of choice and access to services for the profoundly 40+ disabled group that somewhere like Drummonds with everything under one site does.

        Please rethink this and stop the cloud of closure hanging over vulnerable people’s heads when they had believed that they had a home for life.

        Don’t take away all that they know and the community that they belong to even if it doesn’t quite fit with the Govemment’s idea of what a community looks like. I thought life was about embracing difference and diversity not trying to make people fit into a society that isn’t realistically equipped or able to accommodate those on the significantly dependent scale of life.

        In addition, most people at Drummonds have long established friendships which if the centre is closed, will result in friendships of many years being dispersed and we all know how hard it is to make and keep friends, let alone for severely disabled people. Does anyone have the right to take away what may well have been the only long-term meaningful relationship,that many people will have known and for whom once separated we can be assured will rarely, if ever be enabled to maintain such relationships. How can Scope with all that it has stood and advocated for, allow this to happen?

        Stop closures now, redevelop, be creative and find a realistic solution for our most vulnerable community members.

      2. Hi Fiona,

        Thanks for sharing your concerns. We have only just announced these proposals, so we haven’t made any decisions. We will now start planning how and when to consult with each resident, their families, friends and staff. Everyone involved will have a say. Changes won’t happen overnight – we are proposing to close Drummonds in 2016.

        If change happens, we will do everything we can to support you and your relative to find a new place to live that is right for them. This is part of a bigger look at what kinds of services we offer now and might offer in the future. We’d really like to talk with you about all of this and will email you to see how we can do that.

  2. I work at one of these establishments that is on scopes list for proposed closure. I believe that what how is being proposed, is disguting and down right disgraceful.
    In the last 6 or so months scope have given us 7 principals by which to work, these include dignity, equality and choices all of which scope seem to have fogotten when deciding the future of these peoples homes.

    I do not understand how scope can come to these decisions without consulting everyone in volved in or living in these homes that scope are choosing to close without seeing the whole picture of their lives not how scope think that their lives are.
    So far thay have had no choice in
    any of the decisions that are being made about their lives.
    It saddens my heart to think what the future holds for the residents that live at this one home, without all of the others. Whatever happened to human rights and and choices before the facts not after. Why would you want to consultate with the people after you have upset them, wound them up, and made them angry it doesnt make sense why do things backwards. I love working for scope but am very dissapointed in the way that they have done this …..

    1. Hi Sue,

      We know this must be a very difficult time for you, your colleagues and residents. We want to reassure you that we are absolutely going to consult with everyone involved, before making any decisions. We’ve only just made the proposals, and we will now start planning how and when to consult with each resident, their families, friends and staff. Thanks for commenting – we would encourage you to continue sharing your feedback with us and your manager. You can email us at feedback@scope.org.uk.

  3. I work at one of the affected care homes and having talked with some of the service user’s myself, they either don’t want to leave or (in the words of one in particular) “If I am forced to leave I want to go to somewhere exactly like Wakes Hall”. It really worries me that service user’s are going to have to move to somewhere that won’t give them the care they clearly want. And if places like Wakes Hall are going to be closed and replaced with services like Ewer Court, what choice does that leave guys that do not want, or in the case of several at Wakes, would not be able to live in the kind of places that seem to be ‘the way forward’. And if there will be a need for care homes like Wakes Hall to help those that cannot go into the kind of living proposed then why close Wakes? Or Drummonds?

    It truly worries me that some service users.will end up in places that will not cater to the needs that they require or want. If when consulted, all of the service users, their families and the staff do not want to move or to leave Wakes Hall will it still be closed? Surely that would remove the choice and independence that the proposal is suggesting? It seems that the dreams of a few are going to affect the wishes of many. Just because some people who are able to live independently with a little help, does not mean that all can live independently. There will always be a need for homes such as Wakes Hall to give people the care they need.

    And as for not being in the heart of the community, ours may not be right in the middle of, or next to a town, but our service users have plenty of access to the community. More access than the guys at Ewer Court for example and they are right on the edge of the town centre.

    All I wish for is that the service users could have been consulted before this proposal was even made, there could have been ways to do this without upsetting them.

    1. Hi Steve,
      We want to assure you that we are going to be listening to all service users, staff and local authorities about the proposals before we make any decisions. Some residents may want to live in residential care homes, but the proposals are about making sure that our services are right for the future. We will listen to everyone before we make any decisions, which for Wakes Hall, we are currently planning to do in 2016. For lots of disabled people currently in residential care homes, living independently is absolutely achievable. We thought it was better to be open about what we are proposing, rather than making decisions without consulting people who are affected. We would encourage you to continue sharing your feedback with us and your manager. You can also email us at feedback@scope.org.uk.

  4. Is it possible for us to have copies of the proposals to view on-line in order to understand the rationale and full extent of what is being proposed? Then we can all consider how best to unite and join forces to go forwards to ensure Scope remains the highly favoured provider of care for almost all people that I know who have cerebral palsy.

  5. Some initial thoughts, as my daughter is amongst those who are impacted by this proposal. Firstly, the way in which this proposal has been announced can only cause anxiety and distress to the residents of the care homes, their families, carers and friends. The reason for this is that the proposal is so open – e.g. it talks vaguely of ‘changing or closing’ the homes by 2016 – that one can almost imagine any outcome for the residents. I hate to say it, but some of the language and tone of the letter sent to affected families sounds more like a large corporate announcing a ‘downsizing’ exercise – rather than a not-for-profit organisation communicating something which will profoundly affect the lives of some of society’s most vulnerable people. I was heartened, though, by the posts from Sue and Fiona – but saddened, at the same time, that some of their more nuanced understanding of the realities facing many residents couldn’t somehow have been reflected in the official announcements from Scope.
    Alice Maynard’s post starts encouragingly by stating ‘We want to decide where we live, who we live with and how we go about our day’. No reasonable person could disagree with. However, it doesn’t proceed to give any concrete proposals on HOW the changes (or closures) will/can be made. Families and staff reading it, and unable to imagine what changes/closures Scope might have in mind, are inevitably going to feel fearful about the future and what it entails for them and, more importantly, the people they love and support in the current homes. Yes, Scope have replied (to Annette) and explained ‘We didn’t want to cause unnecessary anxiety by talking to people before agreeing our proposals’. But, this response is only after the ‘horse has bolted’ – i.e. the anxiety has already been caused.
    When considering care provisions for my daughter, the fact that Scope, rather than a commercial provider, ran the home (Wakes Hall) was a key factor in opting for a Scope home. It was a matter of trust. I really hope that, in spite of the way that this announcement has been handled, something can still be done to repair the trust. Scope really need to advise clearly on what ‘next steps’ they will now take – and, as soon as possible, to avoid more anxiety and distress for service users, their families and the staff who do so much to support and care for them

    1. Hi Dipak, We’re proposing to close Wakes Hall in 2016. We’re planning how to consult with every person who lives there, their family and staff which we’re planning will happen early in 2016. We will talk to each person about what kind of support they would like in future and work with each person’s local authority to make sure you have the right support which meets your needs in future. We’d welcome the opportunity to talk more – either through the service managers or you can email us at feedback@scope.org.uk

  6. Understandably the response to the proposed closure of Scope’s residential homes is emotive for residents, their families and staff. It is not surprising disabled residents will, at this time, likely react initially by saying that they wish to stay in their current accommodation and families will be concerned for their child’s, brother’s or sister’s future. Staff in all the establishments will be worried about the possibility of losing their jobs as ancillary workers, support workers, team leaders and managers. This is to be expected at this early stage of discussions. Change and transforming services are continual and Scope is no different to any other charity, the public sector or commercial provider of care services. This is happening throughout the sector
    In the last 30 or 40 years the aspirations of disabled people have changed from acceptance of what was deemed best for them by ‘professionals’ to now having choice and control on how and where they live.
    The model of care provided by Scope at present is outdated, insular, is risk averse and jars with the expectations of the majority of disabled people today.
    Change is difficult and challenging. However believing that what Scope provides in their residential care sector will remain unchanged is not feasible or realistic.

  7. The letter sent out by Scope to parents and carers was extremely clumsy, and caused, and is causing considerable distress among the parents and carers of those that will be affected at this time I find it regrettable that no one in this great organisation that is Scope has not grasped the importance of this error and rewritten the letter giving us more information, an indication of when you plan to consult, and some reassurance that you are still the caring organisation we have known over the years..

    Frankly I want you to tell me that you fully understand how it must feel to be helpless, wheelchair bound, with little ability to communicate and knowing your future is uncertain ..to say nothing of how the parents are coping with this situation need I say more!

    1. Hello Frank, we are acutely aware of the anxiety these proposals may cause people who live in the homes and their relatives. We are being open about the proposals so that everyone understands why we’ve made them and can be fully involved in the planning and consultation at each care home. We made the proposals just over four weeks ago and will now start planning next steps. We want to do this in the right way, taking time to listen to every resident and their families to consider what decision to make and to listen to alternatives which offer disabled people more choice and control over how they live their lives. There will be many opportunities for them to talk about what this proposal may mean for them, what kind of care and support they want in future and how they would like to contribute to the consultation and make sure that happens. If you would like to talk more about this you can get in touch with us at feedback@scope.org.uk

  8. My brother lives at Hampton House, one of the care homes Scope are proposing to close – in this case in March 2015. I agree with all the comments from family members and staff. I too am devastated. Nowhere in the original blog or in any of the frankly inadequate replies do Scope say where they are expecting all these severely disabled adults to go. If Scope cannot guarantee to provide accomodation at least as good as they currently have (bettter really as Scope deem that ‘old fashioned’ and inadequate) then how can they possibly justify closing anywhere until they have? I could go on all day. I will try the feedback thingy. However, we should fight these proposals until we have that guarantee from Scope!

    1. Hi Gillian, We will talk to each person who lives at Hampton House to find out how they would like to live their life and what kind of support they can use to do that. Then we and their social worker will support each person to find a new place to live if the care home closes. At the moment we don’t have more details, because we wanted to be open about what we are thinking and talk with people about it, rather than making decisions behind closed doors. We are acutely aware of how difficult this is for everyone involved and we will do everything we can to support your brother and you over the next few months and years. The line about talking more about it with email feedback@scope.org.uk and contact the Service or Area Manager who are happy to meet with you to talk more about it.

  9. Christopher Shellam: you talk about an outdated, insular and risk-averse model and how you resented those who always thought they knew best, imposing THEIR vision on the disabled.

    Over the last ten years I have found Drummonds to be progressive, my daughter has got out into the community more than many able-bodied people although she is profoundly disabled (because Drummonds has ALSO championed the RIGHTS of the MOST disadvantaged who may not have rational thought, language ability and fluent argumentation i.e the truly voiceless) and Drummonds is insular only in the sense that it is an island of brilliance in a very dark world.
    And I have certainly seen the community coming into Drummonds on many, many occasions. (Or is there perhaps an exclusive definition of ‘community’ I am unaware of?)

    As parent I am glad that it is risk-averse; for the profoundly disabled there are risks you do not want to take; treating these service users as if they are potentially independent is very risky indeed. Think about it. Perhaps they are the minority, but should one not accept diversity within disability? I should be most interested to hear from you or Alice what your model for those such as her looks like.

    And I do wonder whether something is about to be IMPOSED on the most vulnerable service users who will, to my immense sorrow, never be independent: someone else’s well-intended vision of how things SHOULD look! And what is your vision for the dedicated and hardworking Drummonds staff, who have my eternal gratitude and ,no doubt, that of other relatives?
    For they have spent years building relationships with service users and, in that sense, they too are relatives!

    1. Thanks for your comment. We are absolutely committed to working with every individual to work out what’s best for them. These are just proposals at the moment and we are planning to consult with everyone directly involved. Whatever happens we will support every person to find out what kind to support they’d like in future and how we can make that happen. That includes independent advocacy so that everyone involved has a voice, can contribute to the consultation and get the support they want in future. We would really like to talk to you about this, so we will email you to see how we can do that.

  10. My sister lives at Drummonds and this news is unsettling on many levels. I think at this point I do not have enough information from Scope about their overall strategy going forward – hinted at by the author of this blog. The statement that disabled people want to live independently in their community in the opening sentence cannot speak for all disabled people by the very nature of the range of disabilities.

    My sister is a very outgoing person and thrives on the community that is Drummonds, offering close contact with many friends and staff. Her quality of life would be diminished outside of this ‘type’ of community.

    So I would like to see the new strategy that points to the closure of places like Drummonds and how this new strategy meets the needs
    of people like my sister. Maybe Scope is not the right organisation going forward be run this type of provision as they cannot cater for people like my sister – and we should seek other providers who can.

    1. At this stage, we’ve only announced proposals – not decisions – on the futures of a number of our care homes, including Drummonds. Before making a decision on each care home, we will consult with the disabled people who live there, their families, staff and local authorities.

      We appreciate that, if and when we do close care homes like Drummonds, different people will want to live in different ways. We would talk to each resident and find out where they might like to live in future. We would also support them to work with their local authority social worker to help people to find alternative places to live based on what they would like to do. We would not want to force anyone into living in a way that is not appropriate for them.

      Ultimately we want to ensure that more disabled people have the opportunity to live independently as part of the wider community – this is a part of a strategy we launched last year. Reviewing our existing services is an important part of achieving that. But we won’t make any decisions without consultation and we’ll always offer as much support as possible to service users, families and staff when we do make changes.

      I’ll ask a member of our services team to get in contact with you – they should be able to answer your questions in more depth.

  11. Hello. My Sister attends one of the services I believe you intend to close. Where can I read your proposals? I cannot find anything on your website and don’t see any links here to any relevant documents?

    1. Hi Philippa,
      You should have received a letter and newsletter with the proposal about where your sister lives. If you haven’t, then please get in touch with the Service Manager and they will talk to you about it. We have only just made the proposals and are now starting to think about and plan next steps, including how we consult with everyone who lives and works at each care home at the right time over the next three years.

  12. Hi Scope, My Sister lives at Drummonds Care Home which as already mentioned above is set to close in 2016. I cannot even begin to put into words how much anxiety, anger and frustration the announcement has caused my family and the other residents and staff who have found a family there. But its not the closure itself that is the infuriating thing, not even the way the news was announced, its the complete lack of reasoning and justification. What exactly is the problem with these homes being open? You yourselves promote choice – yet in closing these homes you are taking these people’s choice away. You seem to view these homes as places where the residences are held against there will and they need ‘freeing’ into the community. I spent most of my day today at Drummonds Xmas fair and there was not a single resident or family member who given a CHOICE would not remain at Drummonds. I fully appreciate that there is a massive amount that some disabled people can gain from supported living. But that does not make it right for everyone. A few years ago disabled people had little choice but to live in a residential home. However if your closures continue people will have no choice but to live in supported living. From where I am sitting therefore, you are not giving people choice, but simply restricting people to something else. All you are doing is imposing what you think is best on others. You are not asking them what their choice is, your simply saying we have made the choice that residential care homes are not what is best for you. Thats your choice not theirs. The only way people will have choice is if they have the option of both. You can say we will talk to the residents and families. You can say we will listen, you can say we will try our best to match the residents needs. You can supply the best advocacy service on the planet. But the simple fact is if the residence at Drummound say their choice is to stay there you will say no. You will make them go somewhere which is not their choice. Which is not what they want.

    I apologise if my blog is abrupt and I promise I do not mean it to be. Its simply I cannot make sense of what is happening and when I saw everyone at the faire today it really was so upsetting to think it is all going to be destroyed for reasons apparently no more equal or liberated than those made before.

    Miriam

    1. Hi Miriam. We are sorry for the anxiety these proposals have caused you and others and thank you for getting in touch.

      You ask about the rationale for our proposals. Firstly, we just want to make it clear that we haven’t yet taken a decision on the future of Drummonds – we will consult with everyone affected, including residents and families before doing that. As we have proposed to close or significantly change 11 care homes, we are spreading out the consultations over three years and are planning to consult with everyone who lives and works at Drummonds in 2015/16.

      On the reasons for these proposals, they were influenced by changes in the support disabled people want to use (however complex their needs) – with more and more opting to live within their communities, supported by staff they choose and using personal budgets. In the future, we believe that this will continue and that there will be less and less demand for services like Drummonds – and we believe we need to respond to that now. We also believe that the society we live in will be a better place if disabled people are fully included. However, we recognise that independent living may not be the right choice for people living in the care homes in the proposals.

      If we do go ahead with the proposals after consultation, we will support everyone to move onto somewhere that is suitable for them and meets their needs. When we’ve closed other homes over the last few years, we’ve found that many people have appreciated the chance to live somewhere new, in another care home, closer to family or with people they’ve chosen to live with.

      Thanks again for getting in touch, we would like to talk to you more about this and will arrange for one of our team to contact you.

  13. By the way, I have tried to use your email service ‘response etc’ but cannot send the message as it asks a load of questions to which I do not have the answers! About email servers and Pop things and passwords (why are you asking me for my passwords anyway?). Usually when you send an email it sends – but not at Scope… Sort it out Scope! Or maybe you don’t actually want a response….

  14. Hi Gillian, we are sorry you had difficulties contacting Scope Response and thanks for letting us know. We do want to hear your response and if you’d like to get in touch about the proposals about some of our care homes, please email feedback@scope.org.uk. We would also really appreciate it if you could let us know what happened when you tried to email Scope Response so we can look at the process and find out what went wrong. Thanks for getting in touch.

  15. Here is my letter to Peter Walker of Scope

    Dear Mr Walker
    As you know from our recent telephone conversation, my name is Gill Robinson and I am the sister of Timothy Calder, who has been a resident of Hampton House for 24 years.
    I must firstly comment on the bombshell letter sent out by Scope to the families of the residents of Hampton House. To say that it was only explaining ‘proposals’ is disregarding the fact that you were presenting the families with an apparent fait accompli. The letter was clumsy and insensitive and has caused considerable distress to the families. There is no reassurance in the letter. Nowhere does it say ‘Don’t worry. We will not close Hampton House until a superior (I say superior, comparable would be acceptable – but in that case, why close Hampton House at all?) accommodation that each residents wants and chooses to live in is found’. The letter also lacks any information. Nowhere in the letter is alternative accommodation mentioned just ‘changes that take place afterwards’ leaving us all in limbo-land. In this context, telling us the ‘proposals do not mean we will stop improving the service we provide’ is meaningless rhetoric. The letter is vague, leaving everyone fearing and expecting the worst. There is the suspicion that the decision to close has, in effect, already been made. This is not ‘sensitive’ and not ’respectful’, this is uncaring and thoughtless.
    You explained to me that Scope have proposed the closure of Hampton House and 10 others because there has been a change in the expectations of disabled people. In the Northamptonshire Chronicle, you called Hampton House old-fashioned and not offering the kind of say that everyone else has over where they live and who they live with (it is actually debateable that everyone really does have say over where they live and who they live with). Shauna Rowe, Scope’s Midlands Area manager, who the families of the residents of Hampton House met with last week, said that Scope want to change society for disabled people and give them more choice and control in their lives and to make this change Scope need to get rid of their large institutions.
    On the face of it, these are noble ideals. For many disabled people, living residentially in a care home would be the last option. However, the residents of Hampton House are severely disabled who can do very little for themselves and who need 24 hour care. If this care does not take place within a group and social setting with people like themselves, their quality of life will disappear. They will be isolated, just seeing a succession of anonymous carers. These proposed closures are actually taking choice and control away from the residents. At Hampton House the residents have freedom to move around and visit other residents and staff as they wish. There is not only room to move and interact but also room to be alone or in small groups if they wish. To take away this freedom and impose a horribly isolated life on them is manifestly wrong. One size does NOT fit all.
    WHERE ARE THEY ALL GOING TO GO?
    The Chair of Scope, in her blog about the closure of these homes says ‘Disabled people want to live independently in their community’. This is a sweeping generalisation that Scope cannot possibly know is true unless they have spoken with every disabled person. I am sure no resident at Hampton House has expressed a wish to live independently. Scope are ignoring the sad fact that most of the severely disabled residents of Hampton House will never be able to live independent lives and to try and impose this impossible and unrealistic ideal on them takes no account of this terribly tragic reality. However, for most of the residents of Hampton House concepts such as choice, control and independence in their lives are less important than stability, continuity of care and being surrounded by people they know and are comfortable with in a sociable environment. To sacrifice all of this for a set of ideals which are frankly not possible and which would lead to a greatly reduced quality of life would be another tragedy for these people who have so little to start with.
    Scope also need to qualify this statement by explaining exactly what is meant by ‘living independently’ and ‘living in the community’. If ‘living in the community’ is similar to the ‘care in the community’ programme a few years ago for people with mental health problems, which was a manifest disaster, I can see huge problems ahead for the well-being and care of severely disabled people. Moreover, most of us do not live independently lives – we live inter-dependent lives. We are dependent on family, friends and colleagues for our quality of life. The same is true for the residents of Hampton House. Take Hampton House away and they will lose stability, continuity of care, friendship and therefore their quality of life.
    WHERE ARE THEY ALL GOING TO GO?
    Scope have decided they do not like disabled people living in large institutions any more. I would dispute that Hampton House is large (only 24 residents) or an institution (it is a home). However, whether Scope like it or not, the residents will be’ institutionalised’ as so many of them have been there for a very long time. Some have been there since it opened. All but 3 of the residents are over 40. To expect them to be able to cope away from this sort of care is unrealistic and short-sighted. It would in fact be very traumatic for them and it is a disgrace that Scope are proposing to do just that.
    WHERE ARE THEY ALL GOING TO GO?
    Following on from that, Scope seem to not be taking into consideration at all this fact that the majority of the residents have been living at Hampton House for over 20 years. Indeed, many have been there since it opened in the ‘70s. In addition, and amazingly, several of the staff have been working there since Hampton House opened and many others have been there for 10 and 20 years. This is almost unheard of in this sort of care environment where there is traditionally a very high turnover of staff. All this means is that Hampton House is unique (although I suspect the other homes proposed for closure will be similar). It is like a family. The residents and staff know each other and understand each other and interact as a family does. For Tim, both the staff and the other residents are his friends, his helpers, his colleagues and the people he interacts with and who he is at ease with. Hampton House is his home where he feels safe and looked after with people he knows. To throw away the years of understanding, experience, knowledge and love that these long-term staff have at Hampton House with the long-term residents would be unforgiveable.
    WHERE ARE THEY ALL GOING TO GO?
    We know, and so should Scope, that disabled people, especially people as severely disabled as the residents of Hampton House, react badly to change. It took Tim about 10 years to settle properly at Hampton House and Scope now want him to go through that again at the age of 48? He will struggle massively in a new place (however superior) without his present carers and his friends (the other residents). For these mainly long-term residents closing Hampton House would be a massive, traumatic upheaval to their, at present, stable lives. To take these vulnerable adults’ home away from them without having anything at least as good to replace it with is cruel, unnecessary, unjustifiable and unforgiveable.
    WHERE ARE THEY ALL GOING TO GO?
    Scope also talk about consultation with the residents of Hampton House. They appear to have no knowledge or understanding of the communication problems most of the residents of Hampton House have, including my brother. Tim is highly suggestible and will respond to loaded questions in the expected positive or negative way, regardless of the consequences of what it may actually mean and I suspect this is true of many of the residents. I have visited Hampton House several times in the last few weeks and it is clear that some of the residents have realised the implications of your proposal. They are frightened. They are frightened they are going to lose the home they love and feel secure and cared for in. They are frightened about where they are going to live. How dare you do this to some of the most vulnerable people in our society? What Scope have already done is cruel. What Scope is proposing to do is cruel. Scope should be ashamed.
    WHERE ARE THEY ALL GOING TO GO?
    Hampton House might not be perfect. It is a bit shabby. They could have more activities (although I note that the activities staff member was made redundant). They do, however, live in the community! They have strong links with Northampton College and have many groups visiting them. Tim regularly goes on shopping expeditions, days out, lunches in pubs and evenings to the theatre or pub (again!) and goes on holiday every year. More could be done, but any small lack (mainly caused by financial considerations) is offset by the family atmosphere and happy feeling you get at Hampton House among both the residents and staff. Visit, for example, on a Saturday evening and you will see the residents and staff whooping it up to Strictly or X Factor and having a great time. It is also offset by the awful prospect of the lack of a decent, appropriate and comparable alternative. There are a couple at Hampton House who were living ‘independently in the community’. They have ‘chosen’ instead to live at Hampton House where they have new friends and a social life. In Scope’s own website you say ‘The aim at Hampton House is to maximise choice, opportunities for personal development and independence for disabled people with complex needs’. What has changed?
    I wonder how much Scope know or care about severely disabled adults. I also wonder about how much this move is prompted by financial considerations. The plot of land Hampton House occupies must be worth a lot of money.
    This awful process is being repeated in 10 other care homes throughout the country, with the same lack of consideration as to what is going to happen to the residents and where they are going to go. So much for quality of care.
    WHERE ARE THEY ALL GOING TO GO?
    Now we come to the crux of the matter. If Scope disregarded everything that I have said above, if the residents, families and staff were happy for Hampton House to close, the fact remains that there is nowhere even comparable for them all to go to. From my recent research of accommodation for severely disabled adults in Central England, the alternative to this supposed independence is living in a care home mainly specialising in care for the elderly, which is wholly inappropriate for the residents of Hampton House. There are a few places which would be ok but none of them have vacancies – nor are likely to have in the future as they are, by their very nature, long-term facilities.
    WHERE ARE THEY ALL GOING TO GO?
    How can Scope possibly justify proposing to close Hampton House (and the other 10 Homes) until they are sure there is alternative, superior accommodation available in the area ready for the 24 residents of Hampton House you are proposing to make homeless to move into? You cannot close these establishments without ensuring there is something better to replace it. This HAS to be done first otherwise you will not be able to ‘deliver the highest possible quality of support’. Scope are proposing to close these homes due to some ideological mindset which ignores the reality of life for these residents and you are replacing them with NOTHING. These vulnerable adults will end up in sad, lonely isolation or in an elderly peoples’ home. What Scope should be doing, before even considering closures, is ensuring there is plenty of alternative accommodation (in this case 147 places) and if there isn’t, to adapt existing buildings or build new, modern up-to -date facilities for all the residents and staff to move into together. However, you have told me neither of these things are going to happen… So, where are they all going to go? Who are all these ‘alternative providers’? At the meeting at Hampton House ‘Delos’ was mentioned. Delos are, as far as I can discover, a private company mainly dealing with people with learning disabilities. The problem with private companies is they are motivated by money and do things on the cheap. We only have to look at the multiple stories of poor care and abuse in the country’s private care homes for the elderly to know that this will never be an ‘appropriate’ alternative to Hampton House. Scope talk about making difficult decisions but what Scope is actually doing is abrogating its responsibility to these people, to my brother. Shame on all of you.
    In my phone conversation with you, you gave me a verbal guarantee that Hampton House would not close until a suitable, appropriate placement is found for every resident. I would like that guarantee in writing please. I also need you to provide me with a list of all alternative providers, preferably charities or Local Authorities (good luck there..), of comparable accommodation suitable for the residents of Hampton House in Central England, whether they have vacancies or not.
    I would like a list of all the Scope trustees and their email addresses and I would also like the email address of the Chief Executive of Scope. I also request a copy of the review and the proposals.
    Finally, and again, WHERE ARE THEY ALL GOING TO GO?
    Thank you for your time. I look forward to hearing from you.

    1. Dear Gillian, please visit the petition we have started at change.org for families of people who do want to remain within modernised Scope facilities:

      http://www.change.org/en-GB/petitions/trustees-of-scope-and-the-minister-for-disabled-people-re-develop-the-drummonds-centre-feering-colchester-essex-rather-than-close-it?share_id=ExvsYZhJSF&utm_campaign=signature_receipt&utm_medium=email&utm_source=share_petition

      We’d be happy to link up with you. Claire who we are fighting for and evryone at the Drummonds Centre, used to live at Hampton House and so we know what a valued resource that is too.

      Alice Maynard talks about getting Scope’s services ‘for the next generation’, but that should in no way be at the cost of the current generations lives. Wait to hear from you. Regards. Fiona

      1. Hi Fiona,
        I would love to link up with you and make this a petition for all the care homes proposed for closure. Please email me directly.
        Regards, Gill

  16. And here is the extra bit to Peter Walker…

    Just one extra point…
    There is an inherent problem with the way you are doing this whole process.
    Because you have left us all – residents, families and staff in a state of not knowing what is going to happen, in limboland, it will inevitably lead to residents and families looking for alternative accommodation and staff looking for alternative employment in case Hampton House does, in fact, close.
    This may result in staff leaving over the next year or so, leaving the residents in the hands of inadequate, inexperienced agency staff who do not know or understand the residents. This may also result in some residents being ‘lucky’ enough to find comparable accommodation, which they will feel compelled to take – despite wanting to stay at Hampton House – in case they are left with nothing if Hampton House does close.
    This means that when the time comes there may be fewer experienced staff and possibly fewer residents at Hampton House thereby making the decision to close much more likely.
    The whole process is therefore skewed in favour of a closure result. THIS IS UNFAIR. However, I suspect, this is a deliberate tactic by Scope.

    1. Hi Gillian,
      Thanks for your feedback and sorry for the anxiety this has caused you. We are acutely aware that the proposals are very difficult and we want to do this in the right way. We hope that you got the reply from Peter in the post yesterday? As Peter said in his letter, please do get in touch with him as we would like to work together at this very early stage when we are just starting to plan next steps after making the proposals. If the proposal does go ahead, we will work with the local authority to find out what kind of life each person would like to lead, the support they need and make sure that happens. We are absolutely committed to the welfare of people who use our services now, but we are also intensely aware of the greater difference we want to make for many more disabled people in future. We will ask one of our team to contact you to talk through some of this with you.

      1. Having this evening read so many comments and connecting with so many fractured emotions from relatives of people in both Drummonds and Hampton House ,and reading the replies emanating from Scope, I sympathise with The Native American Indians who used to say “white man speak with forked tongue” in that Scope does appear to be offering two opposite views within one sentence.
        Yes we want all of our people to have a choice of where they live,
        Then saying we propose to close 11 homes, knowing that this will become a self fulfilling prophesy, and the homes will close, whilst Scope is fully aware that for many of their residents there is no where else to move to.
        So yes we are both confused, angry and disappointed,
        Its time now for Scope to tell us all what is behind their moves, and what evidence they have to justify their actions

        Frank Lindsell

      2. Thanks for getting in touch with us. We are sorry for the distress this is causing you and your family. We hope the meeting with you and other families next week helps to explain why we’ve made these proposals. Outside of Scope, social care services for disabled people have been changing since large residential care homes were set up. We are trying to catch up to provide the best kind of support for disabled people today. Drummonds and other care homes may have stayed the same for many years, but eventually we know disabled people won’t choose to live in large care homes and we want to do the right thing now while we can support people successfully. We told everyone involved as soon as we could so that we have time to listen and talk with residents, you as their family and work together with local authorities. In our previous experience most residents and staff stay until the home closes, so we don’t anticipate them closing because people move out early. After we’ve consulted and made a decision, we are totally committed to ensuring that everyone gets the support they need.

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