Planned care community concept - What do you think?

Discussion
1

Assure Healthcare Group (AHG) is a care service provider providing care for adults with mild to moderate learning disabilities in southern England. We want to discuss a new supported living concept that we have developed through UK based advocacy groups to get feedback from stakeholders in this sector of healthcare.

This new AHG concept is driven by government’s need to reduce public healthcare expenses as our ageing population demands more financing and where fewer people (taxpayers) are paying into ‘the system’, while ensuring that the provision of care is not compromised, but rather can be improved with a well developed, supported master planned solution.

As such, we’re seeking to engage people in the learning disabilities sector for discussion about our planned care community concept that we’ve conceptually termed “The Villages”.

In brief, “The Villages” is a modern 30 - 50 acre sustainable, master planned, scaled community that is designed to accommodate adults with learning disabilities in a public community environment that caters to the needs and interests of people challenged with LD. The Villages concept is akin to a housing development inside of any town or city in the United Kingdom, where anyone may travel freely into the community or from it to any desired destination.

The idea of The Villages is multi-fold, but all premised on providing the opportunity for people suffering learning disabilities to have greater freedoms and improved quality of life while also helping to ensure they’re not left vulnerable where breakdowns might occur.

The Villages is designed to provide adults with LD a safe, 24 hour supported community where they have ready access to life skills training, social activities, jobs, access to nature and the outdoors, sport and leisure activities, light retail and basic vocational education where residents can be professionally assessed and prepared to transition into communities of their choosing.

As conceptually designed, The Villages would provide the following features for service users, their families, carers and the communities where The Villages would ultimately reside:

• Approximately 150 complete residences for service users. A standard room would be inclusive of 1 bedroom, living area, kitchen and bathroom.
• Approximately 15 complete residences for employees of The Villages and their families.
• Day services that include the following: numeracy and literacy, animal husbandry, horticulture, equestrian care, employment preparedness (CV development and interviewing), workshops for auto mechanics, wood and metals, etc.
• Access to holistic practitioners that provide tailored nutritional plan advice, holistic treatment options, yoga/pilates classes, life coaching, etc.
• Civic assets to include all weather football pitches, basketball courts, swimming pool, etc. These assets would be used both for resident service users and career staff as well as for hire to area youth and adult sporting associations.
• Employment opportunities for area residents, to include the following:
o Retail management positions
o Property maintenance management positions
o Manufacturing management positions
o Event coordinators
o Healthcare practitioners (traditional and holistic)
o Teachers for day services positions
o Security personnel positions
o Landscape management positions
• Camping facilities that include small cabins and camp sites for tents with supporting utilities and food services. Access to trail heads would be provided here.
• Town square for use as an entertainment and social gathering as well as for a local farmer’s market where The Villages crops and those of local growers can offer their produce for sale to the general public.
• Light manufacturing where service users and area residents would find jobs in producing various forest products, such as bird houses & baths, brooms, willow panels, fowl coops, rustic furniture, fireplace hardware, Christmas wreaths, etc.
• Conference/meeting facilities for use by clinical practitioners, families & carers, and for low cost hire to community groups, area businesses, etc.
• Light retail that would be open to service users and the public for basic foodstuffs, toiletries, prepared foods, etc.

Operating The Villages per the above concept would allow for premium support of resident service users that also has additional revenue centers that would be designed to offset part of the applicable public budget.

The Villages would operate as mostly self-sustaining communities where holistic farming practices would be practiced, coupled with a rigorous recycling culture with the intent to operate to a near zero carbon footprint as these facilities would produce as much of their own renewable energy as possible via wind and/or solar solutions.

Organic food products (produce and proteins) would be produced on site and would serve to supply the community’s food needs to the extent possible, while also offering fresh, wholesome, locally grown food products to nearby communities.

Please ponder this brief concept description and respond with your thoughts. We kindly ask that you identify your stakeholder position and feel free to make any comments whatsoever. We’re presenting this in a completely open forum for the purpose of generating genuine perspective.

AHG has the ability to execute on a Villages concept as outlined here, but will require support from service users, their families, the healthcare communities, social services and the host communities themselves.

Following a review period of 30 or so days, we’ll pool comments and plan the first of several expected public gatherings for continued discussion in person-to-person settings whereby we’ll provide renderings and generally more specific detail as feedback guides the evolution of the concept - provided there is support for it.

Let us know your thoughts at your opportunity.

Respectfully yours,
Chris Edwards
01329 310825

2

Is it April 1st?

I do hope this is a joke. Even so I feel sick reading this proposal for new institution. That the writer believes that people “suffer” from learning disabilities to my mind should preclude them from ever working with or for people with learning difficulties.

What can people do to stop this becoming a reality?

Cathy

Connect in the North

Bridge House

Balm Road

Leeds

LS10 2TP

0113 270 3233 or mobile 0783 757 8054

Review us here http://leedsdirectory.org/service-provider/connect-in-the-north/ http://leedsdirectory.org/service-provider/connect-in-the-north/

Find us on Facebook http://www.facebook.com/CintN http://www.facebook.com/CintN

Follow us on Twitter @ConnectintNorth

Our website http://www.citn.org.uk/ www.citn.org.uk

Company number 3127540

Charity number 1078829

3

I totally agree. I have a daughter with a severe learning disability and she does not suffer from her disability but enjoys life to the full with the support of her PA’s.

4

I agree wholeheartedly with the two previous comments - you need to re-read your original post and reconsider your language and consider how you would feel if someone told you that you suffered from an aspect of your being.

I can see where your concept is coming from and there are already examples of what you describe in practice (Hesley Group and Botton Village come to mind immediately) maybe not as complete as what you describe but definitely aspects of a village for people with LD. I can see why some people think it is a good idea as it gives an impression that the person will be safe and taken care of; maybe they will be “more independent” as they can go out in the village without support as it is a safe environment.

However - this concept goes against everything that many people with LD and those who support love them have campaigned for - the opportunity to live IN their community just like everyone else and not apart in a separate “special” community.

5

First, I’d like to thank those of you that have the interest and taken the time to respond to my original post. This is precisely the kind of engagement that we’re seeking as we try to discern the viability of our Village concept within the LD stakeholder community here in the UK.

With regard to my use of the term ‘suffer’, I’ll only clarify to say that I am personally not a lay person in the care business, but rather my role is as a business development leader. I have spent considerable time in researching the industry and can only say that I have seen conflicting descriptions of how the industry addresses people with learning disabilities, and I’ll provide just one case in point here:
http://www.learningdisabilities.org.uk/help-information/Learning-Disability-Statistics-/187699/

So please accept my apologies if I have offended anyone as it was not the intent.

My intent, rather, is to look critically at options that will allow us to improve the quality of care for people with learning disabilities in a climate of diminishing public budgets. This is an unavoidable reality as our demography here changes as it is.

Our belief is that if we work collectively together, we can improve care and support services with less financial resource if we can all communicate openly, and respectfully, where new ideas are introduced. This is a consensus-based approached and is what we’re seeking here in the Choice Forum, among others.

So I’d prefer that those responding understand that our intentions are genuine and that we’re seeking open-minded feedback where no malice for introducing ideas is appreciated.

Assure Healthcare Group has administered near 4 million hours of care services to people with learning disabilities over the course of its ten years as a care provider in England and has an exemplary track record in doing so - so our perspective is one of experience and lengthy observations and dialog with service users and their families. What you see from us is not random dialog - we understand the ongoing goal of seeing people with LD achieve as great a level of independence as possible as ours is the same.

We realize there is no perfect solution for all, but we’ve spent considerable effort in researching what we have initially concluded with as the Village concept.

It is true that there are other working case studies as noted by SCOTT26, as well as another that has just come online as an NHS developed community that can be seen here:

Where our Village concept goes beyond products such as Botton Village and, most recently Bournville Gardens, is that our Village concept is more a village within a community that is also a civic and commercial center where residents of nearby communities would frequent for its civic and commercial assets, i.e. not walled, gated or insulated from the ‘external’ community, but a living, working part of it.

The idea here is that we provide a place where people with LD can enter/reenter society in something of a supported environment, learn genuine life skills (numeracy, literacy, vocational skills, cooking, cleaning, etc.), work in a real job environment and interact with people unknown to them thus allowing them to develop the skills and confidence necessary to leave the ‘Village’ and live independently wherever they so choose.

Having the experience that Assure Care has, it has always been the goal to impart independent living skills and guidance to its service users with the goal of seeing them exit their structured care environment forever. This is the case with every care provider, indeed.

Further, we realize that some people view this concept as having institutional qualities but this could not be further from truth. The Village concept must be an integrated component of the communities within which they are located if they are to work successfully in improving the lives of its residents and those around them.

Additionally, we realize there is a mandate to move the majority of service users in residential care environments with LD into supported living arrangements, there is considerable risk where vulnerabilities are real that we believe can be mitigated as we have lengthy experience in observation of service users placed in our care and where we have noted breakdowns where transitions are aren’t well supported. This is where we have seen regression and unnecessary cost become a part of a solution that is imperfect and runs counter to best intentions.

We’ll post more on this as feedback evolves, but we’ll continue to request input from anyone wishing to add comments, thoughts, ideas, etc. I encourage it. I do ask that comments are respectful, however. I think if we’re to be thought leaders, we must assume people’s intentions are pure before making judgments to the contrary.

Although I realize this is something that is new to many and ‘new’ is often resisted by humans, we all have to look outside the box - simply because the box is changing.

If you are a family member or advocate of a service user, we’re keen to hear from you too. What do you see as being best for yours?

I remain available for person-to-person discussion should anyone with the interest wish to speak or meet for honest engagement on the subject matter.

We want to help improve the quality of people lives and is the reason for our participation here.

Respectfully,
Chris Edwards

6

I absolutely agree with you Kathy, both re the language used and the whole concept

Good grief

Graham Palmer

7

Chris, It is good news that you are consulting widely and honest of you to describe yourself as a business manager - I think implying that your skill is in developing viable businesses, not so much understanding the lives of disabled people and their families. We know from Winterbourne View and many other private companies ‘earning’ big money in warehousing people said to have 'challenging behaviour, that sometimes new businesses can thrive (for their often distant shareholders) while completely failing the disabled people they are supposed to be helping.
To avoid this I think it wise to start from agreed principles and consider how best we can deliver on these. The most comprehensive and widely agreed set of principles in relation to people with (learning) disabilities is the United Nations Convention on the Rights of Persons with Disabilities, which I describe as a charter for equal citizenship. I commend you and your colleagues to evaluate your ‘planned care community concept’ against the requirements of the Convention. On the details you have provided here, I think you will find your concept fails on every Article. See especially Article 19: Living independently and being included in the community.
Put simply, on the basis of our common human rights, the Convention requires that disabled people, like everyone else, have the opportunities and support to live an ordinary life alongside their fellow citizens and defintely not in articifially created ‘planned care communities’, a concept which goes back at least to Victorian times.
You seem to have intelligence, integrity and access to significant resources - 30-50 acres sites with all the buldings and services you propose don’t come cheap. I would like to invite you to go back to the ‘drawing board’ and think afresh, together with disabled people and their families, about what would be good ways of implementing the Convention and enabling disabled people to live their lives according to their preferences as ordinary community members, probably like you and I do.
If you are open to this discussion, I would be happy to talk with you about this. We don’t want to spend another generation (as we did with my sister’s generation) helping people escape from ‘Villages’ established by well-meaning business managers.
Thanks,
David Towell

8

Thank you both for raising a much-needed discussion around this, and being so gentle about your genuine concerns. I am writing as Chair of Rescare only in a personal capacity, before we have a trustee discussion about this initiative. If you want to know more about our new-look society then check out www.rescare.org.uk, and our Helpline for top class advice. We are run by families, for families. My speech at a House of Commons seminar organised by the Alliance for Camphill can be seen on our website. You will see that I apologise for speaking American rather than English. Facing our own mortality, as family members of the learning disabled can be one of the most liberating things we do in our lifetimes. We would all urge you to open your minds, let go of past prejudices, embrace the younger generational concern for the earth, symbolised by campaigns like Action for Botton, Botton Buddies. In Bristol where stately homes were given over in perpetuity by philanthropists, themselves parents, we can see where Dower House which dominates the M32 entrance to our city. It was once a safe home to many people, with an active and well heeled volunteer initiative, with real work, instead of mindless activities like shopping at Tesco’s with one sole care worker, was the privilege of those only 10% of the population who lived there. Now as a journalist I have interviewed on film a couple with learning disabilities who are homeless, she was pregnant. While the Dower House, asset-stripped now, is home to a privileged group of people living in a gated community. And I cannot get anymore than 28 hours a week of support for my daughter with Downs…pity the younger generation, where our Mayor, Red Trousers Ferguson, is closing the city’s only 5-bedded respite centre. Only our union Unite community branch turned up to protest, because the mothers are too strung out and sinking to be able to do the same thing that my neighbours who want to save green spaces do, ie protest and campaign. More later, do be open to new ideas, friends. These people are only trying to help. Let’s end the silly labels. The social model of disability has been a disaster, led to a recent Best Interests meeting for my daughter where the NHS health workers stood by silently while a social services manager more or less ordered a private agency to trick my girl into moving into a supported living home she clearly didn t want. Had it not been for our heroic GP pointing out that this would require her to be coshed out with antipsychotics I don’t know what would have happened. There is no partnership here between health and social services, and anything that will improve the hidden lives in this city, like an eco-village is only to be welcomed. Thank you. Warm greetings, Anita Bennett, personal view only.

9

David,

Thank you so much for such a well constructed and calmly reasoned response. I had decided to sleep on it fearing that I was so profoundly angry that I’d fire of an emotional “red mist” response. Now following your prefectly rational reply all I need to do is say well done.

Cathy

Connect in the North

Bridge House

Balm Road

Leeds

LS10 2TP

0113 270 3233 or mobile 0783 757 8054

Review us here http://leedsdirectory.org/service-provider/connect-in-the-north/ http://leedsdirectory.org/service-provider/connect-in-the-north/

Find us on Facebook http://www.facebook.com/CintN http://www.facebook.com/CintN

Follow us on Twitter @ConnectintNorth

Our website http://www.citn.org.uk/ www.citn.org.uk

Company number 3127540

Charity number 1078829

10

Important to remember Valuing People was meant to ensure choice in provision: funding and support to ensure the person with learning disabilities/autism, etc could live at home with their family if that is what they wanted; to live as independently as possible with the right support if appropriate; be able to live in good quality residential care; or to choose to live in a village / intentional community of attachment where a meaningful life can be lived in family households engaging in work or therapeutic activities according to needs, wishes and level of disability.
We need many more village / intentional communities and probably at least two or three in every local authority area to meet needs and the right to choice in provision. My personal view is that it would be better if these like all social care provision should be on a not for profit, voluntary / charitable basis. Private profit is part of the problem rather than the solution.
I was part of the group representing family carers who met with the then Disability Minister to support the government’s decision to allow lawful opt-outs from the UN Disability Convention to ensure the right to choice in provision: the right to choose a special school or college, the right to choose day centre or sheltered work provision, the right to choose residential or village / intentional community care provision alongside other types of chosen provision.

11

We appreciate all of the interest in the topic as well as the replies, supportive or not. This is how market research is carried out most effectively and how consensus can best be formed.

In review of some of the more derogatory comments, it is certain that a more thorough picture could be painted to describe our village concept and I believe this would be important for future discussions as some inaccurate assumptions have been made - owing, perhaps, to lack of clarity of the village concept’s details. I commit to those following - or those new - to this thread that I’ll post a well defined plan of the proposed village as soon as we have gathered enough feedback from our stakeholder engagements to more thoroughly develop the ‘big picture’ with people’s input. The online version will be complete with artist renderings and thorough descriptions of our modern, yet rustic, countryside village communities.

Understand that what we’re proposing is not an inpatient village/community, rather ours would serve to provide solution for the overwhelming demand for supported living accommodation that has been very slow to fulfill. We know there are services users with the capability of living independently that have been unable to realize additional freedoms for lack of options. Thus, no person having tenancy in our village concept would be forced to be there, but would reside there by choice. To assume otherwise would mean that we’ve learned nothing over the past several years.

To that end and for the purpose of getting the point, you could consider that our village is less an LD community and more a planned mixed-use mini-community with services tailored for people with LD.

Our point is that we feel we could improve care by providing a thorough set of ongoing life skills to residents of this village, while also providing jobs tailored for entry level workers with entry level skills that would benefit from highly flexible working conditions.

In Assure Healthcare’s 4 million hours of care service, their observations have been that the service users in their care realized incredible benefits where they were exposed to activities beyond the home care setting. Highly valuable we activities involving animals (animal husbandry), farming and outdoor functions. They grew crops, cared for horses, chickens and sheep and most service users in their care that were exposed to these opportunities widely embraced these kinds of activities.

We’re looking to build on these experiences by adding additional life skills as outlined in my original post (e.g. numeracy, literacy, CV preparation, job interview rehearsals, vocational training, etc. - all the while operating the community as a complete (as much as possible) sustainable ecosystem where everything is produced on site where wastes are recycled.

Further, office space would be provided where practitioners could meet for conferences, undertake assessments, etc.; families could meet with clinicians, residents could get medical care (as could consumers from outside the village).

In creating an environment such as this, we would create commercial activity, and thus jobs - both for people with LD residing there and from people for surrounding communities. Our village would create opportunities and incentive from people from outside the village to visit for all of the assets provided (light retail, food and beverage, camping, equestrian services, hiking, entertainment…etc.

In doing so, we would be able to generate some profit through the village’s commercial activities that could be used to offset costs associated with the housing and care provided for people in the supported living framework.

Frankly, the kind of village/community we’re depicting here is the kind of place most people would enjoy living and/or spending recreational and social time.

I don’t think it can be disputed that people with LD have different challenges integrating into society than those who do not. And we know that these challenges can sometimes cause setbacks as jobs on High Street and elsewhere tend to be unforgiving - all the while it is clear that some simply flourish right away. As we all know, no two cases are the same and our village likely would not be a good fit for every person with LD.

Our view if that if we can provide a quality community environment, where care is ‘on site’, support is nearby, like skills are readily available, vocational training is afforded, jobs offered and social opportunities prevail - and we can so so less expensively, we likely have a win-win-win scenario.

Does this make sense? It is our intention to help evolve the kind and quality of care for people with LD.

I will regularly invite civil respondents to contribute thoughts, ideas, comments - whatever moves you and where it is constructive. How can we build a solution around a community-based concept that can achieve better and less expensive care/support solutions for people with LD? The need to evolve care and think outside the box is not a wish - it is now a necessity.

Many thanks,
Chris Edwards

12

I wonder why you are planning only 1 bedroom accommodation?

How do you propose to cater for married/cohabiting couples, those with children, or those who have live in support?

13

I think this a fabulous idea Chris. My daughter is at a Campbell college and is desperate to continue on to live in this way. Definitely her choice not ours. But there are not enough of them. She, however, wants to live in a ‘family style’ set up, not a one bed place that is reminiscent of the isolated one bedroom supported living flats many of her friends languish in ‘out in the normal community’ with no joined up support or care, too little funding to do what they would choose and as someone else said, endless trips to Tescos. Not what my daughter wants!