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.