Learning from the L’Arche Community Model of Care

The following article is based on excerpts from a chapter by Theresia Paquet and David Ford in the upcoming book, ‘A Kind of Upside-downness’: Learning Disabilities, Friendship and Transformational Community Editors: Ian Randall, David F. Ford and Deborah Hardy Ford (to be published 2019). It describes our deep appreciation for and growing knowledge of the L’Arche community model of care, first founded by Jean Vernier in 1964.

I (Theresia Paquet) first became involved with the L’Arche Kent community (the first L’Arche community founded in the UK by Jean Vanier’s sister, Thérèse, in 1974) in the hope of finding a place for our brother Charl there, as there had been a place for Adam at Daybreak. Adam’s story is told in the book written by Henri Nouen about his experience in the L’Arche Daybreak community in Canada and in particular his transforming encounter with Adam, who had profound physical and learning disabilities. I sought to learn from L’Arche by becoming part of their community and as a deputy manager of one of their residential care homes for five people with learning disabilities in 2017-2018. Since then, together with my brother Werner Bäumker, we founded the care organisation Mannawell to take care of our brother Charl and other loved ones like him. Mannawell is now based in Cambridge, with the vision of caring for people with learning disabilities, inspired by L’Arche and our brother’s life. As Henri Nouwen did, I hope one day to write a book about my brother Charl’s story.

The question I have asked myself is, whether there is the possibility of a type of residential community for people with and without learning disabilities that integrates elements of classic L’Arche communities.

The inspiring aspect of L’Arche is that people come together because they want to be together: they choose to join communities knowing what the values, behaviour and expectations of that community are. It is the mystery of a Christian community being ‘drawn together’ not driven together, in the words of Henri Nouwen. They become a group of people bonded together with a vision to share life together with people with learning disabilities. “The togetherness of the Christian community is not the result of shared anger or anxiety; it grows from a deep sense of being called together to make God’s compassion visible in the concreteness of everyday living” (Henri Nouwen).

In the L’Arche model, the people who share living space are those cared for, and those whose professional work it is to care for them, as ‘live-in carers’. What if this sharing of the detail of everyday living, not just meals and social interaction, but day-to-day sharing of living space, is opened up to people who also have other missions and vocations in life?

Separating the residential element from the professional care element, in part or completely, opens up the possibility of having people with and without learning disabilities sharing life together (and living together) on a purely social rather than a professional basis. This would allow people who have other professional or spiritual missions and callings, or who are still studying or even retired, to choose to live together with people with learning disabilities. People from outside the home, on a professionally employed basis as care and support workers, would primarily meet the physical care and support needs of the people with learning disabilities. Would this encourage a commitment by people that is relational rather than contractual, as the part that needs to be contractual under current regulation (the personal care) would be separately provided?

This model of care delivery complements the current system of adult social care in the UK. There is a desire in the system to see a separation of professional and personal involvement between the ‘professional’ person employed to care and the person being cared for or supported.  That makes the L’Arche message of interdependence – relationships that are centred on presence, mutuality and the importance of the vulnerability of both parties – difficult to encourage and celebrate openly in this system.

The potential of this model is that social interactions are protected from taking place when people who provide care are exhausted from their caring responsibilities. This can easily happen when staff teams are stretched in a social care system that is severely and increasingly underfunded. By reducing the responsibilities and physical care tasks of the people living together, more time, more space and more freedom are created to engage with the people with learning disabilities as friends would engage. Thus, the people with and without learning disabilities living in community can focus on investing in relationships that have the freedom to be mutual and interdependent. That there is social time for friendship and a concentration on celebration, prayer, meals, music, and time beyond work for relationships with people for their own sake.

Thus, the possibility of a type of residential community for people with and without learning disabilities that builds on elements of L’Arche has this advantage: it takes care of the person with learning disabilities, meeting their basic need for physical care and support, whilst building community around them that can meet their social and spiritual desires. The joy is that this opens up to them a circle of friendships and their own mission field of people whose lives they can touch with the message that each is, as all of us are, infinitely precious, created in the image of God, a gift to be treasured, embodying and able to reveal the beauty and love of God.

Care and Housing for People with Complex Needs

The Need - Care Provision

Historically, ‘residential care homes’ have been the de facto institutional care model in UK for individuals requiring high levels of personal care and support. The model combines the provision of care and housing for the individual under one contract. It has been applied to a wide range of people requiring care, such as older vulnerable adults, people with learning disabilities, and people with profound physical and multiple learning disabilities (PMLD).

There are, however, significant and publically documented downsides to this model of institutionalised care provision. Individuals have very little choice in and control over their care and housing. Safeguarding and abuse risks for the individual are regrettably widespread, with the most serious cases often reported in the media. The quality of care is highly variable and often below standard. There may be limited interaction with the wider external community, and involvement with the wider personal family can be minimal or even under threat of restriction. As highlighted by a BBC investigation at the end of 2016, hundreds of care homes across the UK had banned relatives from visiting residents over their complaints about quality of care[1]. Since the provision of care and housing is under the same contract, an individual who wishes to change their care provider may be forced out of the property. Social care in the UK is currently severely underfunded; therefore, the focus easily moves away from maximising the individual’s quality of life to maximising the economic model, i.e. to minimising business and running costs to the detriment of the individual. It is important to note that the individuals in question are mostly unable or afraid to speak up, to raise alarm, or to fend for themselves.

The Need – Housing Provision

There is an acute lack of suitable housing in the UK for people with profound physical and multiple learning disabilities (PMLD). To illustrate, 70% of the general UK adult population own a home, and 30% are in some form of rental contract. Yet, in comparison, 50% of the general UK population of adults with learning disabilities live with their families or relatives, a further 33% in residential care homes, and only 15% live in their own home with long-term secure tenancy[2]. Stated differently, over 29,000 adults with a learning disability are living with parents aged over 70, many of whom are becoming too frail to manage their caring role[3]. In terms of housing provision, 76% of UK local authorities report difficulty in arranging housing for adults with profound and multiple learning disabilities. This compares with 29% reporting difficulties arranging housing for people with only mild learning disabilities[4].

There is no one route to housing provision for these individuals who seek to move on from either an institutional care home setting or from an ageing family setting to one where their care and housing needs are better met. Most people approach local authority social services while others will approach specialist housing providers, large housing associations, or the housing department. For the individual or family relative seeking to resolve their loved one’s long-term care and housing, it is mostly a confusing, bureaucratic and fragmented process to follow. All the while, demand for suitable housing continues to significantly outstrip supply on a national scale.

Meeting the Care & Housing Needs: The Case for Supported Living

We strongly believe that the Supported Living model for care and property provision is an economically viable and socially sustainable alternative. In contrast to institutional care, Supported Living is based on principles that put the individual at the centre. A recent statement by the ‘Office of the United Nations High Commissioner for Human Rights’ reveals a number of problems with institutional care that interfere with people’s human right to decide for themselves where they want to live and what they want to do when they need support in daily living[5]. Rather than moving the most needy and vulnerable into institutional care, the Supported Living model focusses on giving the individual choice in and control over their lives, over what care they receive, and where and with whom they live[6]. The key difference is that the care provision and housing provision are contractually separated to enable the individual to have greater choice and control over each component. In this model, people with learning disabilities own or rent their own adapted residential property, thereby giving them housing rights and security of tenure. Their government state-funded housing benefits enable the direct payment for the property rental / lease. They may choose to live on their own, with family, or together with a small number of others with similar needs, which allows them to build their own community. Additionally, they separately have choice and control over the personalised care and support services provided in their Supported Living house setting; so if they wish to change their care provider, they can. Their government state-funded care support packages enable payment to their preferred Supported Living care provider for personalised care.  

As one would expect, it is widely documented that people with disabilities thrive when they have the level of control they want over their lives, homes, and support[7]. There is increasingly strong UK government, local authority, and policy support for the Supported Living model, with a growing number of Supported Living arrangements being launched across the country. In recent years, government legislation has directed local authorities to place people with learning disabilities in Supported Living based upon strong evidence that the model aligns with the human rights aspirations of choice and control, and recognition from government that people with learning disabilities are entitled to the same aspirations and life changes as other people[8].

Meeting the Need: The Launch of Mannawell

It is through personal experience that I am very aware of the acute lack of suitable housing, the lack of consistent quality of care, and the lack of social community for people with disability. My elder brother Charl, aged 40, has profound physical and multiple learning disabilities that stem from an adverse health reaction to vaccinations at 6 months of age. Charl is a wheelchair user, with cerebral palsy and spastic tetraplegia. He is unable to communicate verbally, unable to care for himself, and requires full support to carry out all activities of daily living. And yet he is a joy to be with, gives you a radiant smile whenever you meet him, and loves family visits, especially from his nephew and niece. Throughout my childhood and young adult years, my immediate family and I personally cared for his everyday needs within the family home. He moved out of the family home to a state-funded institutional residential care home approximately 9 years ago due to his increasing full-time care needs. Unfortunately, it is only with daily family visits to his residential care home that Charl’s social interaction, quality of care, and quality of life are upheld. Charl’s situation is not unique. There are tens of thousands of individuals with profound physical and multiple learning difficulties in the UK that share a similar story.

It is for this reason, and against this personal background and journey, that in early 2017 my younger sister and I teamed up to incorporate and launch Mannawell, a UK non-profit organisation, now fully registered with the Care Quality Commission (CQC) (an executive non-departmental public body of the UK Department of Health, established to regulate and inspect all health and social care services in England). My sister, Theresia Paquet, is a consultant in social care, and was previously an academic Research Fellow at the University of Kent. Her research focussed on the economic evaluation of government state-funded health and social care, including extra care housing. Given my background in property and private equity investment, we hope that our complementary skills will stand us in good stead as we pioneer a number of solutions that are economically viable and meet both the care and housing community needs of those with profound disabilities, such as our elder brother Charl.

Mannawell: Purpose, Vision, Objectives

The launch of Mannawell is therefore a personal response to the urgent national need for sustainable care and housing solutions for people with profound physical and learning disabilities, especially those placed in large, residential care models where residents have limited control and choice.

Mannawell’s vision is to support the integration of people in communities of all abilities, and to serve and support them through care and housing provision. In so doing, Mannawell aims to be a visible ambassador for both individuals with disabilities and their families, to support them and to give them a voice. Integral to building community is Mannawell’s volunteer programmes.

Mannawell takes the Supported Living approach by separating care provision and housing provision for the individual in need. It aims to achieve the following strategic objectives:

• (1) To provide 24/7 compassionate and person-centred care and support services to people with profound physical and multiple learning disabilities in their own homes.

• (2) To provide people with profound physical and multiple learning disabilities access to their own property in community with others in a Supported Living setting of 2 to 4 residents per house. The first adapted Supported Living house is to be opened in Cambridgeshire in 2019.

• (3) To provide volunteer programmes that connect (i) the local community and especially (ii) troubled teenagers/youth, with people with profound and multiple physical and learning disabilities.

[1] Myska, S. (2 November 2016) Care home bans relatives who complain. BBC's Victoria Derbyshire Programme. http://www.bbc.co.uk/news/health-37825745

[2] National Development Team for Inclusion (NDTi) (2010) Supported Living – Making the Move: Developing Supported Living options for people with learning disabilities. Commissioned by the Department of Health. London: NDTi Housing and Social Inclusion Project www.ndti.org.uk

[3] Emerson and Hatton (2011) Estimating Future Need for Social Care among Adults with Learning Disabilities in England: An Update. London: Department of Health, IHAL Report 2011 http://www.improvinghealthandlives.org.uk/uploads/doc/vid_10673_IHaL2011-05FutureNeed.pdf

Foundation for People with Learning Disabilities (2015) Learning Disabilities Statistics: Support. http://www.learningdisabilities.org.uk/help-information/Learning-Disability-Statistics-/187696/

[4] https://www.mencap.org.uk/sites/default/files/2016-08/2012.108-Housing-report_V7.pdf

[5] https://www.theguardian.com/social-care-network/2017/jun/29/councils-pushing-residential-care-stripping-rights-save-money?CMP=ema-1696&CMP

[6] National Development Team for Inclusion (NDTi) (2010) Supported Living – Making the Move: Developing Supported Living options for people with learning disabilities. Commissioned by the Department of Health. London: NDTi Housing and Social Inclusion Project www.ndti.org.uk

[7] Social Care Institute for Excellence (2012) At a glance 8: Personalisation briefing: Implications for housing providers. Briefing co-produced with the National Housing Federation. http://www.scie.org.uk/publications/ataglance/ataglance08.asp (accessed 18/12/2015).

[8] Laing and Buisson (2011) Illustrative Cost Models In Learning Disabilities Social Care Provision. Commissioned by the Department of Health. London: Laing and Buisson.

Re-Thinking our Approach to Choice

The article below was written by invitation for the The Housing Learning and Improvement Network (LIN). The Housing LIN, formerly responsible for managing the UK government’s Department of Health's (DH) Extra Care Housing capital programme, is the leading 'knowledge hub' for a growing network of housing, health and social care professionals in England involved in planning, commissioning, designing, funding, building and managing housing with care. 

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Do we need to re-think our approach to choice, and giving people with learning disabilities the choices that are spoken of?

Written by Dr Theresia Baumker, Independent Consultant, Health Economics & Social Care.

As highlighted in an article in The Guardian newspaper [1], a recent statement by the Office of the United Nations High Commissioner for Human Rights reveals a number of problems with institutional care that interfere with people’s human right to decide for themselves where they want to live and what they want to do when they need support in daily living. As such, models where housing and care are separately contracted (such as Supported Living) have found favour in the current UK health and social policy world. They incorporate aspects of choice and control that are not found in residential care models. Yet, real choice is limited because of too little supply: too little housing exists for people with learning disabilities to allow them to make the choice to move away from living at home with aging parents into settings other than traditional residential care (which then often occurs at a time of crisis) or to move out of their current residential care setting.

According to the National Development Team for Inclusion, ‘it appears that we are currently seeing a shift away from options that offer choice and control, towards more traditional residential care – with these developments being implemented on the rationale that residential care is lower cost’[2]. One of the most concerning issues raised by individuals, families and local authorities is the lack of available housing for people with a learning disability – something that is a major barrier to independent living. Too many people with a learning disability remain on waiting lists for long periods of time, housed miles away from family or living in housing arrangements that need improving[3].

This was the motivation for the recent roundtable event/ discussion day[4] hosted by the Housing LIN and HACT. The event brought together parties interested in increasing the supply of housing for people with learning disabilities and how to make this happen practically, on the ground. I was delighted to be given the opportunity to speak on behalf of families with a loved one with a learning disability at the event.

As summarised at the end of the Transforming Care Partnerships – Housing Choices, Housing Cares day, ‘we are not speaking of a provider solution, but about people’s homes’. There was a clear message throughout the day that it is not only about talking and sharing, but also about ‘doing’. We need to ‘do’ in terms of increasing the supply of housing options for people. The day was about exploring and sharing best practice that can lead to service improvement and transformation – to redesigning housing and care pathways on the ground.

In this context, there is ever more a sense of urgency to listen to the voices of the people. The UN document mentioned above[5] states that ‘countries should include the voice of persons with disabilities in their plans for independent and community living’. This was wonderfully put into practice at the beginning of the event, which began with a video of Hayley Burwood’s personal account of her own circumstances[6]. At the heart of all that should be done for the future of housing choices, should be what the industry has termed ‘experts by experience’ – people with learning disabilities, their carers and families, and parents with children living at home. Their voices must remain at the centre of the debate, when decisions are made about future provision of housing.

In 2014, the NHS England commissioned Sir Stephen Bubb to produce a report on how to accelerate the transformation of care for people with learning disabilities, in which he rightly stated; “People with learning disabilities and/or autism and their families have an array of rights in law or Government policy - through human rights law, the Equalities Act, the NHS constitution, the Mental Health Act, the Care Act, the Mental Capacity Act, the UN Convention on the Rights of Persons with Disabilities, and so on… [but] the lived experience of people with learning disabilities and/or autism and their families is too often very different. Too often they feel powerless, their rights unclear, misunderstood or ignored (Transform Care NX, Winterbourne View, pg. 10).

By urging policy-makers, commissioners and providers to listen to the voices of the people, raises the second point this article wishes to highlight: let us not offer only one solution, but let us maximise choices. Let decision-makers listen, even to the most marginalised groups.

The policy agenda is about separation of housing and care, and rightly so, as this affords not only choice and control to people with learning disabilities but also protection from being removed from their homes if they or their families complain about the care [see my Housing LIN guest blog, Home is where the heart is[7]]. But often families just want a solution, especially older parents of people with a learning disability. If they find the right care, but need to struggle to navigate the pathways into housing, then either someone has to walk this difficult path together with them step-by-step, or there should be sufficient housing so that finding an appropriate home is not a difficulty.

However, there is no one route to housing for people with learning disabilities. Most people approach social services but others will approach specialist providers and others will go to the housing department. The process can appear confusing and fragmented for people with learning disabilities and their families. Support and housing for most people with learning disabilities needs to be planned together, but it can be problematic to co-ordinate housing and social services and deal with the complexities of the benefit system, various regulations and funding streams[8]. We should be cautious that regulation of supported living, which emphasises separation of housing and care, does not prevent organisations from walking the path with people to help them find a solution for both housing and support. It cannot be left to committed, persistent and long-suffering families to draw these two elements together on their own – which is often the case in the success stories.

While much needs to be done to improve access to independent living for people with a learning disability generally, there are some groups that face greater barriers to housing than others. Three of the most marginalised groups in housing provision include: people with profound and multiple learning disabilities (PMLD), people with a learning disability who live with older parents and people with behaviour that challenges. Seventy-six per cent of local authorities report that they have had difficulty arranging housing for adults with PMLD. This compares with 29% reporting difficulties arranging housing for people with a mild learning disability[9].

This draws me to a personal observation: shared supported living and living in intentional communities is not emphasised in the policy and regulation agenda of independent living. But not everyone wishes to live alone: people search for community and building relationships. People with learning disabilities also search for community and building relationships. Therefore, living arrangements focussed on community and living together with others should still be open to them, especially for people with profound learning disabilities who cannot access the local community so easily. From an economic perspective, support costs can also be shared in sharing living arrangements and staff wellbeing improved by not working alone. Alongside a suitable housing arrangement, the right support is crucial. People with complex needs require high levels of support from staff with the appropriate skills. Families have told of occasions when they were advised by their local authority that certain housing types would never be an option, given the person’s high support needs and thus costs[10].  Again, too often, the success stories of people with profound and multiple learning disabilities achieving happy and fulfilled lives when funding and skilled support are in place have been hard won and harder still to keep in place.

Yet, there are many success stories that need to be celebrated, shared and built upon. The hope for the future is that such stories will be easier to achieve. The great encouragement for the future is that key stakeholders are aware of the lack of availability of housing that limits people with learning disabilities exercising real choice, that dialogue is happening such as the roundtable event, and that positive action is planned. Let us keep compassion and care for people with learning disabilities and their families at the heart of all that is done to provide homes for them, and keep listening to them and each other.

[1] https://www.theguardian.com/social-care-network/2017/jun/29/councils-pushing-residential-care-stripping-rights-save-money?CMP=ema-1696&CMP

[2] https://www.ndti.org.uk/resources/publications/housing-choices-discussion-papers

[3] https://www.mencap.org.uk/sites/default/files/2016-08/2012.108-Housing-report_V7.pdf

[4] https://www.housinglin.org.uk/Events/Transforming-Care-Partnerships/

[5] http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DGCArticle19.aspx

[6] https://www.housinglin.org.uk/Topics/type/Listening-to-me-Video-address-by-Hayley-Burwood-Volunteer-Chair/

[7] https://www.housinglin.org.uk/blogs/Home-is-where-the-heart-is/

[8] https://www.ndti.org.uk/uploads/files/Feeling_Settled_Final_Report_February_2011.pdf

[9] https://www.mencap.org.uk/sites/default/files/2016-08/2012.108-Housing-report_V7.pdf

[10] https://www.mencap.org.uk/sites/default/files/2016-08/2012.108-Housing-report_V7.pdf

Home is Where the Heart is

The article below was written by invitation for the The Housing Learning and Improvement Network (LIN), published on their website. The Housing LIN, formerly responsible for managing the UK government’s Department of Health's (DH) Extra Care Housing capital programme, is the leading 'knowledge hub' for a growing network of housing, health and social care professionals in England involved in planning, commissioning, designing, funding, building and managing housing with care. 

The article was written in response to the recent BBC investigation which uncovered that hundreds of care homes in the UK are banning relatives from visiting residents over complaints about quality of care. This is directly opposed to the principles governing Mannawell. Mannawell wishes to support and listen to the families of the people we support, as we recognise the central role of this important and lifelong relationship. Mannawell also wishes to be engaged in the development of housing and care options (such as “supported living”) that differ from traditional residential care models, so that people with profound physical and multiple learning disabilities can have more control over the support they get, who they live with (if anyone) and how they live their lives.

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Written by Dr Theresia Baumker, Independent Consultant, Health Economics & Social Care.

It is important to listen. When people who are supported by the community care system in England have family members or friends who have something to say, it is important to listen. These are the people who speak up because they care deeply. They are not paid to care, and they choose to spend their time, energy and emotions willingly on the person who is in receipt of care. The organisations who are paid to provide the care should welcome, value and celebrate this voluntary involvement. And, in relation to public finances, estimates show that the care provided by friends and family members to ill, frail or disabled relatives saves the public purse £132 billion per year [1].

However, a listening approach has often not been adopted by organisations in my experience. My brother has profound and multiple learning disabilities and has lived in a variety of residential care homes in England since 2002. If our input is not welcomed, it begs the question: Why?

If we were to place a stethoscope against the heart of an organisation providing care, may we hope that it beats because it cares about the person being cared for and not because it cares about what they represent financially to the organisation. We live in a world of scarce resources, which need to be allocated efficiently - even as parents, siblings or other family relations or friends, we are aware that funding needs to cover costs, and that money talks. We are not ignorant. But too often our loved ones are spoken of as if they are an 'asset' or a 'debt' on the balance sheet, and care seems to have become a commodity.

As highlighted by a BBC investigation last month [2], "hundreds of care homes are banning relatives from visiting elderly residents over complaints about quality of care". From my own experience, I must say that I am not surprised. I dare to venture that many relatives and friends who have a loved one in a care home are also not surprised by this finding. It is frightening to consider this reason why relatives are banned: to 'bully' into silence those that witness the daily realities of the care provided and courageously speak up when they wish the care to improve. It is frightening that care homes are able to do so.

I know many people who visit their relative in a residential care setting several times a week, or often even daily. I have seen the emotional stress and physical exhaustion this has caused. If their concerns are not listened to, this can severely affect their own quality of life, with a cost to the National Health Service, as highlighted above.

According to the updated government policy paper on carers' health in 2015, "The demands of being a carer can affect a person's quality of life, including their ability to study and work, their finances and their health. People providing high levels of care are twice as likely to be permanently sick or disabled, and 625,000 people have health problems because of their caring responsibilities"[3].

When we choose to stay involved even though we could easily relegate all responsibilities to the care provider, then this input is a gift (or free resource) that should not be scorned. Often, we 'prop up' the underfunded system by providing the care we see is lacking or inadequate, rather then allowing our loved ones to suffer. Too often unfortunately, care providers will not see such input as helpful but as complaining and they will react negatively or defensively. Sometimes, if the resident is publicly funded, the organisations place extreme pressure on relatives to fight for more money from social services departments if they wish the care for their relative to improve. If the situation does not improve and family members continue to seek improvements, then the relationship may even break down between families and providers, as highlighted by the recent BBC investigation.

Even if our concerns as relatives cannot be alleviated in the short-term, we can understand if we see that the organisations at least endeavor to listen to us. If relatives and friends are afraid to speak up because of the consequences, the system is in danger of silencing those who listen to whether the heart of the care system is still beating with compassion. I personally know of families who have been threatened that their relatives' placement is vulnerable at their current care home. For people with profound and multiple learning disabilities, it can be extremely difficult to find new placements in the same local area.

Family members or friends will have known the person in receipt of care for many years - longer than the organisation now providing the care. Staff may change at the organisation and high staff turnover and inexperienced staff may characterize an organisation. Organisations are dynamic and fluid. Family members will have a longer shared history with the person, and often are a more stable and consistent anchor in their lives. It is these characteristics, which mean that family members have earned the right to be listened to. Yet, I have experienced that many families have come to the end of their strength and have found no source of external, independent support.

The Care Quality Commission (CQC) [4] states, "we can't make complaints for you or take them up on your behalf. That may seem confusing but it's because we don't have powers to investigate or resolve them". This leaves families feeling extremely vulnerable when they encounter an organisation, where they feel that their resident's care is consistently inadequate. I personally was recently told that the CQC would only step in if I wished to raise a safeguarding concern, but because I love my brother I do everything in my power to sustain his health and wellbeing so that such a situation does not develop.

In the light of the above, it has left me trusting in no other option for my brother's future, than to leave my previous work and start a small non-profit company where the person cared for, and also their families, are at the heart of the services and support provided. It is our dream to move him into a small house with two other friends with disabilities, where they are able to live a full and joyful life and where they, and their families, have more control over their lives than in a residential care home.

It is well documented that people with disabilities flourish when they have the level of control they want over their lives, homes and support [5]. Moreover, it has been highlighted that personalisation of services requires a: "broad range of choice in the local care and support market, including housing options, and a person-centred way in which care and support services are delivered wherever people live" [6]. In many areas of the country however, there is an acute lack of suitable housing for people with physical and learning disabilities.

Thus, it is important to listen, not only to family members or friends who are concerned about the quality of care, but also to the needs of people with learning disabilities. It is also important to continue to create more choice and control for them in where they live and how they are supported.

Published on Thursday, 15 December 2016 by the Housing LIN

1. Carers UK and University of Leeds (2015) Valuing Carers. And NHS England (2014) NHS England's Commitment for Carers.

2. Myska, S. (2 Noveber 2016) Care home bans relatives who complain. BBC's Victoria Derbyshire Programme. http://www.bbc.co.uk/news/health-37825745

3. Department of Health (2015) 2010 to 2015 Government policy: carers' health https://www.gov.uk/government/publications/2010-to-2015-government-policy-carers-health/2010-to-2015-government-policy-carers-health health

4. Care Quality Commission (4 November 2016) Visiting someone in a care home. http://www.cqc.org.uk/content/visiting-someone-care-home

5. Social Care Institute for Excellence (2012) At a glance 8: Personalisation briefing: Implications for housing providers. Briefing co-produced with the National Housing Federation.

6. Think Local, Act Personal (2011) Think local, act personal: A sector-wide commitment to moving forward with personalisation and community-based support.