Extra Care Scoping Paper

Extra Care Scoping Paper SEWIC

Elle McNeil October 2011

With special thanks to the colleagues and officers from across SEWIC local authorities, Swansea University, Catrefi Housing Cymru, Chartered Institute of Housing and Sue Garwood from the English Housing Learning and Improvement Network for contributing their informative discussions, time, knowledge and information.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 1 Executive Summary This scoping document has been compiled through desk-top research and discussion with officers and colleagues working with extra care. Extra care appears to be an attractive concept offering a model of support to older people different to the more traditional models of sheltered housing, support at home and residential or nursing care homes. While the literature is currently inconclusive on the overall outcomes for older people living in extra care, it is suggested that intensive care needs are and health care costs reduced. Identified below are key points for the readers’ consideration reflecting the SEWIC project charter to review extra care housing’s ability to contribute to reshaping care delivery for older people and deliver cost savings of 15-50% compared to residential or nursing care models:

Reshaping care delivery to older people  The research indicates that extra care schemes should be developed in partnership with health and housing providers and older people, set in the wider strategic framework of meeting older people’s accommodation, health and social care needs.  Successful schemes outcomes for residents and their local communities are dependent on how they are developed (e.g. with wide consultation and involvement), who works within the scheme, the contractual arrangements for the care and housing services and the mix of the residents themselves.  Evaluations of small schemes targeted at supporting EMI or learning disability residents show innovation in supporting specialist needs within a community environment. o Considering extra care on a regional or sub-regional basis to meet the needs of older people with cognitive deterioration, learning disability or younger people with a dementia (in particular those with Korsakoff's syndrome) would meet niche pressurized client categories.  The not-for-profit developments seen in England are not currently being replicated in Wales. They offer a potential growth area that could meet the needs of older people who are asset rich with high aspirations, or asset rich income poor1 which would in turn subsides meeting the needs of older people surviving on the breadline.

Cost savings  Due to the different definitions and implementations of extra care throughout the UK, it is impossible to make proper comparisons between individual schemes or have an overall view of the effectiveness of extra care in terms of outcomes for the residents or cost effectiveness for the parties involved. o Not seen in the Welsh models, but more common in rural areas of the UK the ‘hub and spoke’ approach offers the possibility of cost savings to delivering domiciliary or housing support within an area and community resources (e.g. day centre services, community meals or leisure facilities).  There is very limited research on costs and savings of extra care schemes, and currently no longer term analysis on costs. Few analyses show the ‘true’ cost inclusive of the costs to staff involved in the commissioning or monitoring side, nor the additional costs to assessment care management functions administering admissions. o What research is available suggests that health are the most likely to make savings through admission prevention, and savings on delivery costs.  Any extra care scheme will have substantial capital costs in either building or refurbishing existing accommodation to be considered alongside the revenue costs.

1 See later discussion in ‘Developing other approaches to meeting older people’s accommodation needs’

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 2 Extra Care Scoping Paper There is a growing body of research regarding extra care housing schemes, covering a range of topics from the best ways of achieving their successful completion and integration into their local community to their impact and outcomes on residents’ lives. A summary of the salient points of interest to this scoping paper include:  Setting the scene for extra care  Defining extra care o Learning points for developing successful extra care schemes  Models of extra care for specific older people’s client groups and their outcomes – o older people with dementia and their carers o older people with physical or sensory disabilities – ‘homes for life’ o older people with a learning disability or functional mental health diagnosis o different models of tenure  A review of extra care schemes in Wales by Swansea University o Welsh housing association research into health and housing  Cost effectiveness of developing and running extra care schemes  Developing other approaches to meeting older people’s accommodation needs  SEWIC and extra care o Learning points from across the SEWIC region o SWOT analysis of extra care for SEWIC regional

NB: Hyperlinks to reports, websites and further reading can be found throughout the main body of the text by scrolling over underlined words. If these do not open when you left click on them, right click and then click on ‘Open hyperlink’

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 3 Setting the scene for extra care

Key Data Extra care sits within a range of responses proposed to enable service change that will meet the change and increase in demand for services for older people. The below statistics2 outline the population drivers: UK Data  In 2008 in the UK, the number of people aged over 65 is projected to rise from 10.1 million to 16.7 million over the next 25 years. Over the same period, the projected rise for those aged 85 and over is from 1.3 million to 3.3 million.  It is estimated that public spending on social care will need to triple over the next 20 years to keep pace with the ageing population with already over half of NHS spending in Britain is on people over 65.  By 2036, there will probably be 2.3 million people aged 85 and over, an increase of 184%. This will mean greater demand for accessible housing and neighbourhoods designed to maximise the quality of life of all residents, including those with physical disabilities, sensory need or dementia.  About 3 in 4 of those now retiring are owner occupiers, with 69% of 65-74 year olds and 66% of people over 75 owning their homes outright.  The average cost of a Disabled Facilities Grant pays for a stair lift and level access shower. These items will last for 5 years. The same expenditure would be enough to purchase the average home care package for just one year and three months.

All Wales Data  There are approximately 3 million people in Wales, of which about one in five are over 65 years of age.  In population terms, the most significant change is that people are living longer. By 2026, nearly a quarter of the population is expected to be over 65 years old and nearly one in twenty people over 85 years of age. Average life expectancy is increasing, but varies considerably across Wales. Several years separate the best and worst areas  Of the 1.3 million homes, nearly three-quarters are occupied by their owners. Owning a home remains the goal for the majority of people but the recent problems in the housing market are leading more people to turn to other options, such as renting a property.  By 2021, the number of people with dementia across Wales is projected to increase by 31% and by as much as 44% in some rural areas. o One in 14 people over 65, one in 6 people over 80, and one in three people over 95 has a form of dementia

SEWIC Data  There are approximately 1.4 million people in the SEWIC region, of which about one in six are over 65 years of age.  Using projections, the over 65 years old population is set to rise to by 75,665 and accounts for nearly half the total population rise by 2023 while remaining a relatively static as a percentage of the total population between 17 - 20%.

2 Statistics used are from the ‘All Party Parliamentary Group on Housing and Care for Older People report’, Welsh Government’s Local Authority Population Projections for Wales (2008-based), Older People’s Strategy and National Dementia Vision for Wales and derived from StatsWales. SEWIC Extra Care Scoping Paper v8 - Elle McNeil 4 o The projected increase in the over 65 years old population living with a dementia will be from 16,782 in 2008 to 22,186 by 2013.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 5 SEWIC feasibility study The SEWIC feasibility study ranked extra care housing as the third option in within a program of work to begin to address the challenges facing the social care and health economy of South East Wales. The study identified the potential for the development of extra care housing to:  contribute to reshaping commissioning and procurement strategies away from traditional residential and nursing care models towards a model of care that supports and maintains service users independence skills  deliver care and support within the setting and the wider community  cost savings compared to residential home models of care. It is assumed within the feasibility study that developing suitable extra care housing options provides whole systems benefits, not just reduced equivalent domiciliary and residential costs, but also reduced avoidable admissions to hospital and associated costs/capacity issues. Whole systems benefit should have whole systems investment. Developing extra care housing solutions will require working across geographical and organisational boundaries with Local Authority, NHS, Housing and the Third Sector partners to achieve whole system service change. Extra care housing sits within SEWICs options ‘Commissioning for change’ to deliver a long term sustainable service change and budget efficiency. Delivering services that support service users independence; community engagement and ‘whole system’ partnership working to move service ‘demand’ and spending patterns beyond ‘more of the same’.

Each SEWIC Local Authority, to a lesser or greater degree, is investing in alternatives to residential care, including extra care housing. All have extra care facilities either built or planned, with most expressing longer term plans for further extra care developments as part of a move away from traditional service models. This scoping paper explores extra care in order to inform discussion on how extra care can contribute to reshaping care delivery for older people in a coordinated regional and/or sub-regional commissioning context.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 6 Defining extra care There is no one definition of extra care within the literature, but the Department of Health’s Housing Learning and Information Network (HLIN) describe extra care as a concept covering a range of specialist housing models for older people with particular design features and the guiding principle of promoting and maintaining residents’ independence. In short, extra care can be defined as ‘purpose built accommodation in which varying amounts of care and support can be offered and where some services and facilities are shared’3. Common themes are:  self-contained accommodation, usually flats or bungalows where tenants have a legal right to occupy the property, either through purchasing or renting – this reflects the point that extra care is housing first  the provision of individualised packages of care which are flexible and adapt to changing needs  care staff and support available 24:7  use of Telecare technologies to support and monitor residents  catering facilities providing meals (usually hot meals at least once a day)  communal facilities including, for example, lounge(s), restaurant, communal kitchen, hairdresser, and shops.

Models of extra care There is a myriad of different schemes that have been developed throughout the UK and further afield, each scheme having features unique to the local needs of the target population. In this way it is difficult to isolate what makes a ‘good’ or ‘successful’ scheme. The target audience and anticipated outcomes for them are key to identifying the extra care model with reference to whether it is designed to be a replacement for residential care or a ‘home for life’ for younger older people with no social care or health needs.

3 Care Services Improvement Partnership (2006), The extra care housing toolkit SEWIC Extra Care Scoping Paper v8 - Elle McNeil 7 Fig 1: Locating Extra Care Models from the CSIP, 2006. The extra care housing toolkit Figure 1 shows the needs and support available throughout the range of extra care housing schemes. The literature is clear: to ensure success, all parties involved must understand and share the same definition of extra care for the planned scheme. Having a clear definition from the outset for the individual scheme, or a regional approach, is also required to enable effective communication and marketing to the public at large.

Available online are a number of toolkits which provide comprehensive guides to developing extra care schemes from the strategic planning stages through gathering baseline evidence to good practice in staff training and development. The toolkits and checklists are designed for commissioners, planners and practitioners. See references for a full list and further reading.

Learning points of developing successful extra care schemes From the wealth of individual case studies and wider reviews of extra care schemes (see references) there are some key points evident on developing successful extra care schemes:

Before starting out  Extra care should be developed as part of a strategic approach, either local or regional. Forming part of an older people’s accommodation and/or commissioning strategy, specific themes for specialist client groups can be developed e.g. for people with a dementia, learning disability of functional mental health problem and/or their carers. o Ensuring the strategic direction and fit enables individual schemes to focus on meeting localised needs, and supports the schemes community integration.  Thorough research is required to establish the need, and whether extra care is the most appropriate or cost effective solution. This includes consulting and working with the target audience from the start to ensure the development suits their needs and wants.

Working in partnership  Establishing partnership working with the key players of social services, health, housing, supporting people, the target resident audience and their families, RSLs, developers and care providers from initial stages ensures joint understanding of the strategic direction, operational plan and remit of the scheme being planned. o Having written agreements is advised, particularly between health, social services, housing and the care/housing support provider. o Having clearly written roles and responsibilities, an admissions policy, funding and public information about the scheme will help with ensuring the understanding of all parties.  Some case studies demonstrated how working with providers from the outset led to good and open relations which gave greater flexibility to meeting individual’s needs and ensured commitment to the scheme’s aims.

Working with the local community  Once a site has been selected for the development, working with the local community from an early stage is advised. This is required if developing the evidence base to develop community activities and facilities. o If developing specialist schemes, e.g. for people with dementia and their carers, ensuring early engagement to raise the understanding and awareness of the

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 8 client group within the local community will help aid integration and minimise any stigma attached to being in the scheme. o Working with the local community encourages the community to utilise any community based resources or activities in the scheme, such as U3A or adult education groups run on site, increasing social integration and preventing the scheme from being perceived as an institution or exclusive resource.  Wide ranging promotion and awareness-raising of extra care with the target audience and the community at large is advised. This is to increase understanding of what extra care is in relation to other forms of accommodation targeted at older people, which will help stimulate demand and prevent any misconceptions arising. It will also help to ensure that the local community clearly understand the purpose of the development.  Co-locating services and / or providing a range of community focused services from the scheme location promotes a community hub model while also offering potential for cost saving on building and travel costs. Services offered onsite range dependent on the local needs analysis and commissioning strategies, but examples include day centres, GP or district nursing services, older people’s mental health specialist provisions, floating support services bases for home care and / or housing support, as well as private enterprises such as shops, cafes, hairdressers, gyms and swimming pools. o Ensuring wide consultation and needs analysis for the whole community can lead to the buildings being developed meeting a greater range of needs than just for the scheme tenants. Promoting a community hub model promotes community integration, social isolation or potential stigmatising of residents minimised and informal support or volunteering networks are encouraged.

Staffing  Appropriately trained staff is key to having a successful scheme deliver effective support that promotes independence of the residents. A number of papers4 cover in some detail the suggested range and breadth of staff training for extra care schemes targeted at older people. o In addition to having specialist training required for the client group, having skills around group working and community involvement / development are advised to support appropriate activity development and community integration. o Having housing support, daily living skills, communication skills and dementia awareness training are advised for both care and housing support staff.  The staff set-up is key to ensuring that the residents are supported in an enabling way and that the scheme does not feel institutional. Selecting a scheme manager with a range of skills from housing to care management, alongside their ability to develop links into the community, helps establish a successful scheme with social integration. o There is dispute as to whether housing support and care support should be from separate providers. As housing and community based support are separate skills to domiciliary care, either good staff training and development are required to get a holistic skill mix, or separate providers. Where separate providers are commissioned, issues of housing staff not supporting when a ‘care’ related

4 Of particular note on the need for staff to have or develop competencies to meet extra care schemes can be found in:  ‘Extra Care Housing and Dementia Commissioning Checklist’ produced for the Department of Health National Dementia Strategy in June 2011  S. Garwood (2010), ‘A better life for older people with high support needs in housing with care’, Joseph Rowntree Foundation - the need for specialist knowledge and skills in relation to the mental capacity act and dementia care and key workforce questions for commissioners to consider in Appendix 4: ‘Workforce issues in housing with care for adults with high support needs’ by J. Manthorpe and J.Moriarty  Care Services Improvement Partnership (2006), The Extra Care Housing Toolkit SEWIC Extra Care Scoping Paper v8 - Elle McNeil 9 incident occurs, such as a fall have been identified, show a need for clear roles in crisis situations and enabling cross-over support.  Selecting staff and getting the right mix is key, with research indicating that staff from a residential care background may require substantial training and development to change their working practices to support residents in a more enabling manner.

The building  Ensuring the design of the building is ‘future proofed’ for the likely physical and cognitive deterioration of residents such as paying particular attention to meeting the needs of sensory impairment and people with a dementia.  Making best use of new technologies such as Telecare and Telemedicine to enable remote support and monitoring of residents.

 Where the manager and staff are located and how accessible the communal facilities are to tenants and local residents impacts on how both tenants and residents perceive the schemes level of institutionalism. The concept of ‘progressive privacy’ to define levels of accessibility from public to private space will also impact on these perceptions5.

Fig 2: Model of progressive privacy from H. Wojgani and J. Hanson, UCL (2007), Extra Care Housing: A paradigm shift

 Depending on the need the scheme is identified as meeting, different research provides guidance on meeting tenant, resident and staff needs and concerns6. Aspects to consider as part of the design process are highlighted in the diagram below.

5 E. Trotter et al, (1998) Remodelling sheltered housing, Housing 21, London. 6 H. Wojgani and J. Hanson, UCL (2007), Extra Care Housing: A paradigm shift

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 10 Fig 3: The interrelation of the design components of extra care housing - Ibid

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 11 People with dementia and their carers Extra care for EMI clients has not received particular attention in the research field, with low numbers of schemes being specifically developed for EMI clients, and where EMI clients are studied, they normally form a small number of the tenants within a scheme. A number of case studies and evaluations of individual schemes exist, but no longitudinal studies of the outcomes for EMI residents and/or their carers7. The information below is drawn primarily from Housing and Dementia Research Consortium commissioned research, as well as individual evaluations of small EMI targeted schemes. In all the case examples found, the Extra Care schemes that have been developed are very small and designed to meet a specific local community focused need. The research shows strong evidence and general agreement that it is not appropriate for people to enter extra care when they already have advanced dementia.

Common themes Schemes specifically designed to meet the needs of people living with dementia and their carers have a number of common themes, including:  being developed as a resource base for the local community to meet the needs associated with dementia, e.g. providing a day centre resource, memory clinic work, carer support groups and meeting some health needs, where health are a partner;  a progressive care element aiming to enable those with dementia to be maintained within the scheme until end of life. This can include the extra care being attached to, or on site with EMI residential or nursing homes;  specialist dementia trained staff, including behaviour management, communication skills and delivering care while maintaining people’s daily living skills. The focus on person centred delivery and promoting independence are central to the schemes offering an alternative to residential settings;  community focused work to ensure the schemes’ integration with the local community, and/or local understanding of dementia, mental health more generally, and the possible behavioural affects on residents;  some schemes have been developed specifically to enable tenancies for couples, so that the carer can remain with the service user, accessing support while maintaining their caring role;  and smaller schemes with a mix of residents at different stages of their dementia to prevent the schemes having an institutional feel;

Successful developments:  have strong partnerships at their core, with professionals from health, housing and dementia specialist organisations to ensure that the design enables all partners to work within the schemes. This ensures residents can access the required support, while offering efficiencies to staff travel and time.  involve the local community throughout the process to ensure the schemes and their residents are not stigmatised. This also helps to ensure the scheme’s success, particularly where there is co-residency for carers.  ensure that residents are moved at the optimal time, at the early stages of dementia, to enable them to adjust to their new surroundings and establish social networks8. This is also linked to a scheme’s success

7 R.Dutton (May 2009), ‘Extra Care’ Housing and People with Dementia – A scoping Literature Review, Housing and Dementia Research Consortium 8 Ibid SEWIC Extra Care Scoping Paper v8 - Elle McNeil 12 Outcomes for the residents in EMI only Extra Care schemes Outcomes are generally reported as favourable, in particular where the schemes are well integrated with the community, enabling residents to continue to participate in their local community and day-to-day living for longer9. Having an enabling model of support for residents ensures they maintain their daily living skills, and distress caused by awareness of the dementia can be minimised through the right staff approach. Where carers are living with their cared for person, they report positive outcomes as this enables them to stay with their loved one, receive good support, learn from the specialists and maintain their support networks in the community. Families and non-residential carers have also shown positive outcomes, where the scheme’s staff provide support, knowledge and information to them about dementia, helping them understand its affect on their loved one and have realistic expectations about their future10.

Mixed dementia and non-dementia Extra Care schemes Where those with dementia are not the target audience, but are not excluded, evaluations show a mixed success rate, largely determined by the scheme’s staff and residents’ ability and willingness to cope with people as their dementia progresses. Research indicates that schemes not specifically designed for people with dementia move on residents who develop dementia in order to better meet their care needs, as well as to reduce tension between residents with lower levels of care needs11. Residents may be moved when they become ‘unmanageable’ due to their dementia, which can increase the individual’s decline12, therefore how a scheme will manage people with a dementia diagnosis must be considered from the outset of the scheme. Tenants with dementia in a mixed setting are also potentially at risk of social isolation and discrimination from other tenants due to their lack of understanding and empathy about dementia and its affect on people13.

Issues for consideration The literature notes with concern that placing dementia clients in extra care does not always offer a ‘home for life’, with reference to level of physical or mental decline of the individual. Residents requiring nursing care, or whose physical frailty result in hospital admission are not maintained in extra care, and those with high care needs can raise the issue of registration for the schemes. The Swansea University research commissioned by Welsh Government (discussed later) noted with some concern that the current extra care schemes in Wales moved on residents when their dementia advanced, and interviews with residents highlighted they anticipated moving to specialist EMI care if they were diagnosed with a dementia or had increased frailty and inability to self-manage their care with support14.

See the case studies in Appendix 1 for examples of good practice.

9 As noted within the Housing LIN’s review in 2008, Duddon Mews Extra Care Scheme for People with Mental Health Problems and Physical Frailty in Cumbria 10 As noted within ‘Rowan Court: A specialist extra care dementia scheme in Hampshire’ by Patrick Fowler, (January 2009), Journal of Care Services Management, Vol. 3 No. 3, p275 – 283 11 R.Dutton (May 2009), ‘Extra Care’ Housing and People with Dementia – A scoping Literature Review, Housing and Dementia Research Consortium 12 Prof. V. Burholt et al, (August 2011), Extracare: Meeting the needs of fit or frail older people?, research commissioned by Welsh Government 13 R.Dutton (May 2009), ‘Extra Care’ Housing and People with Dementia – A scoping Literature Review, Housing and Dementia Research Consortium 14 Prof. V. Burholt et al, (August 2011), Extracare: Meeting the needs of fit or frail older people?, research commissioned by Welsh Government SEWIC Extra Care Scoping Paper v8 - Elle McNeil 13 People with physical or sensory disabilities – ‘homes for life’ Designing a ‘home for life’ is a much discussed concept within the housing sector, covering not only building and design standards such as the Welsh Quality Housing Standards, but within the context of older people’s accommodation, the concept of enabling people to live in their homes to the end of their lives. This requires properties to be adaptable to meet increased physical or sensory disability, ensuring safe and welcoming neighbourhoods and overcoming access issues to ensure older people remain a part of their local community. A ‘home for life’ needs to be designed to take account of changing demands and lifestyles of the future by providing flexible internal layouts and allowing for cost-effective alterations15. A small number of schemes were identified that contained elements within them designed specifically for people with sensory impairment, providing specialist care to BSL first language users, those with visual impairment, or deaf-blind individuals. The designed environments, utilising advances in technology, and specially trained staff enable residents to maximise their independence while also offering a unique social opportunity to residents who are otherwise at considerable risk of isolation and exclusion due to their sensory impairment. The research did not identify any schemes specifically for older physically disabled clients, possibly linking to issues of those with very high care needs requiring nursing care. More common to extra care is ensuring that the design takes advantage in technological advances to ensure that any resident can be maintained in the scheme regardless of whether they experience physical decline. The increase of sight and hearing difficulties in older age emphasises the need to future proof buildings that will allow residents to age in situ. Good practice examples involve specialist charities such as RNID or RNIB in the design process of the schemes to ensure that often simple ideas, such as all doorbells being fitted with auditory and visual responses can help prevent avoidable problems arising in the future as the residents age16. Having fully adapted properties, with, for example, space for hoisting equipment in the living environment, walk in bathing facilities and access for mobility scooters, ensure the schemes are more able to offer a ‘home for life’. These are basic elements to most successful schemes.

Common themes Well reviewed extra care schemes designed to meet the current and future needs of older people who are likely to become frail elderly with increased physical or sensory impairment, have a number of common themes, including:  The design of the living and communal environments makes use of best practice guides and specialist advice services for people with sight or hearing loss17 and gives consideration to: o colour and shade, with contrasts maximized, particularly between doors and walls o signage is bold, clear and in lower case, with multiple cues where possible, e.g. sign, smell and sound o the lighting is carefully designed to provide maximum coverage but minimal glare (e.g. walls are painted matt) o flooring is plain and pathways are highlighted by high contrast colours / tone o markers are used throughout the building to enable easy orientation, such as distinctive colours on different floors, individualised front doors for residents, use of smell and sound to help with orientation where possible

15 Care Services Improvement Partnership (2006), The Extra Care Housing Toolkit 16 Ibid. 17 Both the RNIB and RNID have a number of guides available online, offer a specialist advice service and can be approached to work in partnership during the planning stages of a new development to provide free advice on good practice. SEWIC Extra Care Scoping Paper v8 - Elle McNeil 14  Ensuring the properties are fully adapted to enable people with mobility impairments full access throughout the building and grounds, such as disabled toilets in the communal areas, benches and resting areas within the grounds for those with poor mobility.  The communal areas (lounge and dining room) allow space for residents with wheelchairs or walking aids and have a clear focal and reference point visible from the main entrance, e.g. a fireplace in the lounge. Alcoves or niches within these areas are included in the design to enable small groups to gather for socialisation, and access to external spaces for alfresco dining or sitting is recommended18.  Wired for full use of Telecare and Telehealth technologies to ensure the residents safety and enable effective health monitoring with links to either an onsite or offsite response service. A minimum package of fall, flood, smoke, carbon monoxide and temperature sensors with the ability to add devices as required to meet the individual’s need.

Outcomes for the residents Outcomes are generally reported as favourable, with an enabling model supporting residents to maintain their independence for longer. Having specialist staff to interact with users was noted as particularly beneficial to BSL users. All extra care property designs are able to learn from the specialist models and take advantage of the practical and technological solutions they have developed.

People with learning disabilities or functional mental health diagnosis Few schemes specifically designed for people with learning disabilities or mental health diagnosis could be identified from the literature. Always created in partnership with health, schemes varied from having a specialist wing developed either attached or on site with a mental health unit for either functional or dementia related mental health care, or health-led learning disability units. Incorporating residents with these needs into broader extra care schemes for older people was apparent where social services were leading the developments and admissions policies. The effect of having a mixed model of need within the schemes indicated some areas for potential conflict between the more able residents and those with higher social care and support needs, with additional issues of creating activities to suit the diverse range of abilities19.

Outcomes for the residents Outcomes are generally reported as favourable, with an enabling model supporting residents to maintain their independence for longer. Having specialist staff to interact with users was noted as essential. Similar to schemes focused on dementia care, where a specialist scheme is developed, ensuring community involvement throughout the life of the scheme to minimise social exclusion or stigmatising of residents when out in the community is essential to achieving success. Ten learning disability extra care schemes, funded through the Department of Health, were evaluated by the housing LIN20 which found that the smaller projects were little different to well-

18 Care Services Improvement Partnership (2006), The Extra Care Housing Toolkit 19 Personal Social Services Research (PSSRU), University of Kent (2009), Evaluation of the Extra Care Housing Initiative 20 Care Services Innovation Partnership (2008), ‘A Measure of Success an evaluation of the Department of Health's Extra Care Housing Programme for People with Learning Disabilities’ SEWIC Extra Care Scoping Paper v8 - Elle McNeil 15 conceived independent, supportive living. Compared to mainstream extra care housing for older people the developments had similar features except they:  were smaller in scale (some only two learning disabled adults living together), with only two comparable projects of remodelling sheltered housing into extra care facilities  were not exclusively for those over a certain age, with only one scheme being exclusively for older people with a learning disability  have more limited facilities related to scale, and  often do not have a restaurant. The findings indicated parties considered the schemes a ‘success’ on the whole, providing new housing for people with a learning disability. The DoH grant was seen as an essential catalyst for the changes enabling the local authorities and partners to experiment with limited risks, such as shared home ownership, adaptations in the privately rented sector and remodelling extra care for parent-carers supporting a learning disabled adult. The two schemes more comparable to extra care models as defined previously are considered overleaf.

Different models of tenure within extra care Most of the literature reviewed is of extra care facilities developed in partnership between local authorities and housing associations. Of this type of extra care development there are a number of examples where the developments are provided on a mixed tenure basis of part- ownership, for sale (leasehold) or on a rental basis from the social landlord. Mixed tenure schemes with units for sale or private rental can provide a greater mix of abilities within the resident population, which in turn creates different opportunities and issues considered below.

Opportunity With the potential for rising incomes of older people and nearly 3 in 4 of those now retiring being owner occupiers21, we may see an increase in private sector developers of extra care schemes pursing mixed tenure developments22. Based on the current available information, much of the private sector development remains largely opportunistic but there is growing evidence that private sector developers and local authorities are beginning to work together more closely to broaden the housing and lifestyle choices available to older people23. It is said that the extra care market is at a critical point in its development, with the potential for it to plateau and remain a relatively small-scale sub-sector of older people’s specialist social housing which currently only houses around 5% of the older population24. Local authorities have a significant role to play if this market is to develop into a mainstream, cross tenure housing option for older people, offering choice and independence and catering for a variety of care needs and lifestyles in old age25. It is suggested that where mixed tenure is being pursued that having a clear local strategy for extra care and older people’s accommodation will help ensure improved partnership working at a commissioning level, with an important impact on the effectiveness of the marketing, nomination, assessment and allocation processes26.

21 J Porteus, APPG Inquiry Secretary (2011), All Party Parliamentary Group on Housing and Care for Older People 22 Housing LIN (2008), Whose Market? Understanding the demand for Extra Care Housing: A Strategic Approach 23 Housing LIN (2005), Yorkshire & the Humber Region Extra Care Housing Regional Assessment Study 24 T Brown, De Montfort University (2010), Housing an Ageing Population: The Extra Care Solution 25 Housing LIN (2008), Whose Market? Understanding the demand for Extra Care Housing: A Strategic Approach 26 Housing LIN (2010), Assessment and Allocation in Extra Care Housing SEWIC Extra Care Scoping Paper v8 - Elle McNeil 16 Retirement villages and private sector (not for profit organisations) extra care schemes offer potential savings to the public purse through insurance model or ‘pay as you go’ access to care support for tenants. These are considered later within this report.

Issues Developing schemes with a mixed tenure add a layer of complexity around admission. As residents make a lifestyle choice to live within the scheme, admission is not assessed on the basis of a social care or housing support needs assessment. This can lead to conflict between residents due to perceptions about, or lack of understanding of different disabilities (as noted previously), as well as issues with managing differing levels of need and creating accessible activities for all residents27. Allocating tenancies in a mixed tenure scheme can prove challenging with potential for conflict between the housing provider wishing to ensure full occupancy levels, and social care services wanting to ensure that allocation includes a mix of levels of disability and support needs. Block contracting for the domiciliary or housing support provider can add further issues in allocation with referencing to estimating potential new tenants levels of support28. Establishing an allocation policy based on a shared vision for the individual scheme which clearly outlines the purpose of the scheme and who it will house is a key tool for achieving success. The Housing LIN’s summary of assessment and allocation29 identifies these key ingredients for allocation policies:  Residence and housing needs (including issues such as the requirement for a local connection with priority given to those needing to move on ‘medical or welfare ground”).  Care and support needs (including the approach to FACS criteria and setting any minimum level of need). o Having an agreed balance, prioritisation or weighting between housing and social care needs.  The capacity and willingness of the older people to live relatively independently within a shared community (with particular reference to the scheme’s and residents’ ability to support differing levels of disability if a targeted resource for people with mental ill health, dementia, a learning disability or sensory impairment is being considered).  The approach to maintaining a balanced community (including, for example, definitions of bandings such as low, medium and high needs groups, and the proportion of each).

27 Personal Social Services Research (PSSRU), University of Kent (January 2009), Evaluation of the Extra Care Housing Initiative 28 Ibid and Housing LIN, (2008) Reeve Court Retirement Village: Block Contracting Care in Bands & Individual Budgets 29 Housing LIN (2010), Assessment and Allocation in Extra Care Housing SEWIC Extra Care Scoping Paper v8 - Elle McNeil 17 A review of the extra care models in Wales Swansea University was commissioned by Welsh Government to undertake a review of extra care in Wales30. Comparing the experiences of 183 older people supported in the community (59), in residential (66) and extra care (58) settings, the research aimed to identify whose needs are being met by extra care housing and some of the knowledge gaps regarding supported living environments. The research examined the quality of life and experience of older people in the different settings, sought views of managers and social workers and explored the cost effectiveness of extra care compared to residential or home care.

Key findings  Extra care environments provide for the least frail older people (least physically frail, and least cognitively frail). The most physically frail were being supported in the community and those in residential care were the most cognitively frail.  In order to assess the level of care given in the different environments, the study looked to identify the range and depth of services used by the individual’s reviewed, finding:

High Depth

Community Care 15 Community Care 1 Extra care 4 Extra care 1 Residential Care 15 Residential Care 0 Low High Breadth Breadth Community Care 9 Community Care 5 Extra care 18 Extra care 4 Residential Care 5 Residential Care 5 Low Depth

Fig 4. The ‘Degree of complexity of services grid used in each of the care environments grid’ (p29) adopts observations from Rankin and Regan’s work31  Applying the above analysis model, the study found that the care services provided within extra care facilities lack both breadth and depth. Low breadth of services is indicated by the use of one type of care or support service (e.g. personal care services), and high breadth is equated to the use of two or more such services. Low depth is indicated by a limited use of this service. A high depth is indicated by more extensive use of a service – for instance, a personal care service is composed of two or more calls and involves a number of care tasks.  The limitations of the extra care facilities were recognised by residents who anticipated that if they developed complex care needs (especially dementia), they may not be met. For those in residential care, residents felt that the environment would meet their needs as they increased, but questioned whether they would be dealt with satisfactorily.  The three care settings showed different approaches that implied that community care and residential care managers focus on providing the older person with care, while extra

30 Prof. V. Burholt et al, (August 2011), Extracare: Meeting the needs of fit or frail older people?, research commissioned by Welsh Government 31 Rankin, J. and Regan, S. (2004), Points/ Institute of Public Policy Research (IPPR), London, Meeting Complex Needs: The Future of Social Care. Turning SEWIC Extra Care Scoping Paper v8 - Elle McNeil 18 care managers provide care with the purpose of enabling older people to participate in the community.  As there is no set definition of extra care or what the facilities should provide, extra care had a more variable capacity for meeting the needs of older people than either residential or home care.  Extra care managers appeared unwilling to admit or continue to cater for people suffering with cognitive deterioration. The research found that people exhibiting signs of cognitive deterioration were systematically excluded from extra care through the assessment and admissions processes on the basis that they ‘may pose a risk to themselves or others’. This appears to limit the services provided in extra care with implications for older people considering applying to schemes.  The research found no difference in the levels of loneliness between the three environments reported by interviewees. Extra care appeared to enable frequent but fairly superficial encounters and exchanges in communal areas. The increased level of meetings of residents within extra care did not necessarily lead to high quality and emotionally satisfying social relationships. o Extra care can reduce social isolation, particularly of widows, by increasing the opportunity for social interaction, but did not affect feelings of loneliness.  The study found that, on the whole, the type of care environment had no significant direct impact upon personal, social, environmental satisfaction, or satisfaction with access to personal services. The care environment did impact on the levels of satisfaction with financial and personal care services: o Older people in residential care were least satisfied with control over their finances o Extra care residents were least satisfied with access to personal care services. The report found some extra care residents were not fully informed about the distinction between support, personal care, health, or in-house services.

The report made a number of recommendations that could lead to improved extra care across Wales, some requiring Welsh Government action and some which could be acted upon by both local authorities and individual extra care schemes as outlined below:  Raising awareness and understanding of dementia with the general public to enable a more supportive community approach for older people living with mild to moderate cognitive impairment in the community.  Deinstitutionalisation of older people with mild to moderate cognitive impairment to promote more inclusive care and support for their carers and in recognition of this growth area within the older population.  Clearer information about the services and charges applicable to extra care at the point of making the decision to move in. With particular reference to information about onsite service availability, the difference between services (housing, personal care and health support) and the upper limits of care provision that can be managed within the scheme.  Residents with long-term friendships and supportive networks in their communities are supported by scheme managers to maintain these through accessible transport.  Residential care could be improved by managers learning from good practice examples of social activities developed within extra care models and increasing the number of trained staff to try to engender a greater sense of control that the older people have over their lives.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 19 Welsh housing association research into health and housing Kafka Brigade UK, a not for profit research organisation, were commissioned by Community Housing Cymru and Care and Repair Cymru to undertake a study32 to identify opportunities for the community housing sector to support health related outcomes. They reviewed the existing services provided by registered social landlords (RSL) in Wales that offer a level of health or social care related support, and looked to establish the cost effectiveness and outcomes of these services, as well as interviewing health and housing practitioners, and considered both new possible models for development and services that could be expanded. Acknowledging the health benefits of good quality housing,33 the study outlined the 38 Welsh RSLs involvement in health related services in broad terms as: 1. Housing associations offering some sheltered housing stock 2. Housing associations that have taken advantage of the funding made available by Welsh Government to develop extra care facilities alongside sheltered housing 3. A small number of housing associations have become care providers, with increasing focus of extra care (13 RSLs have extra care schemes in Wales) and nursing care provision (3 RSLs). Additionally, the RSLs provide a number of supportive services including:  Telecare where 21 of the 38 RSLs provide some form of telecare  Domiciliary care is offered by 8 RSLs  Respite care is offered by 6 RSLs, utilising extra care or nursing beds  Supporting people are involved in 25 of the RSLs in Wales  Specialist disability services are provided, with 18 specialist residential mental health homes and 8 RSLs with specialist disability care units. Work to quantify the cost effectiveness of supportive interventions was inconclusive within the study, with the exception of linking step-up/step-down placements and home adaptations to preventing hospital admissions or delayed transfers of care. The literature review concluded that evidence suggests a real value can be gained by investment in preventative services, but that there is an overall lack of empirical evidence to support claims made about the cost effectiveness of models. It noted a lack of detailed modelling of the flow of people through services and to support evidence of prevention/delay ‘savings’ and that identified ‘savings’ were rarely cashable or accrued to the organisation investing in the preventative measure. With reference to extra care the study highlighted from interviews:  Potential over provision of extra care units as a result of the capital funding program encouraging organisations into the field over a relatively short period of time.  Under-utilisation of extra care units due to their relative expense to both the statutory funder and individual, with take up being lower than originally predicted. This was reported as compounded at times where funders delayed placements resulting in cost implications to the RSL, statutory funder and individual.  Concern for housing association reputation ‘if / when an extra care scheme fails’. However, it also concluded that in partnership with health, extra care offered an area for expansion for RSLs, particularly the development of early discharge support schemes and increasing the level of available health and care support within extra care or sheltered housing schemes.

32 M Mathias, Kafka Brigade UK (2011), Breaking through Bureaucracy: Involving the Citizen: Empowering Frontline staff: Unleashing Change – A report for Community Housing Cymru Group 33 Shelter Cymru (2011), The cost of poor housing in Wales SEWIC Extra Care Scoping Paper v8 - Elle McNeil 20 Cost effectiveness of developing and running extra care schemes Conflict within the literature exists as to whether extra care is cost effective to social services, health, the public purse more generally, or even the individual residents, with a reported: “systematic lack of evidence about the potential, the costs and benefits, and consequently the cost-effectiveness of extra care housing.34” The difficulty in establishing cost effectiveness is in part due to how each individual resident’s costs are allocated, whether they would have moved from, or would otherwise have been in residential or nursing care, if they are making contributory payments to their care, whether health are contributing funding and so forth35. Even within case studies, conflict can occur on whether extra care saves costs for individuals or local authorities36. The aforementioned Swansea University report could not conclude on the cost effectiveness of Welsh schemes to the public purse due to a lack of available data, highlighting this issue37. On the whole the literature indicates that social services generally pay more for residents after they move into extra care than they paid for them in their previous homes, whether this was in the community or in residential care38. It is likely that health services ‘save’ money through decreased hospital admissions, and reduced costs associated with district nursing, but these savings are non-cashable39. However, the positive outcomes for the residents and enhanced service they receive in comparison to those receiving care in the community, and the positive cost benefit in terms of freeing up housing resources (where residents move from larger family homes to one or two bed extra care facilities), is often stated to outweigh any lack of direct savings made by social services or health. Depending on the individual scheme, greater or lesser cost savings may be realised for partners. Cost-shunting by local authorities from social services to social security (housing benefit) funding for the housing element if moving residents from residential to extra care is apparent 40. Transferring costs between budgets does not equate to overall cost savings41, and differences in charging for residential or community based care is not always taken into account when looking at the overall true cost42. Where block contracts exist for a mixed level of care provision, social services may make savings on some of the bands of care, but not all. High rated care bands offer conflicting information where some evaluations show social services save in comparison to paying for residential or nursing care, and others that it costs more as the resident is not charged under FACS nor do health pay for the health care related components43. Contracting en bloc can enable greater flexibility and security to the provider in terms of offering them both revenue security and enabling them to move hours to suit individual’s needs as they fluctuate within a given banding. It is said that this can promote very positive working relationships between social services and the provider as well as positive outcomes for the individual residents44. Supporting People monies can show particular cost inefficiencies where the scheme provider delivers both social care and housing support, but staff are not housing support trained45. Supporting People monies also appear from discussion with supporting people managers in

34 Croucher et al, Joseph Rowntree Foundation (2006), Housing with Care in Later Life - A Literature Review 35 Ibid 36 S. Garwood, Housing LIN (2008), ‘Reeve Court Retirement Village St.Helen’s: An evaluation’ 37 Prof. V. Burholt et al, (August 2011), Extracare: Meeting the needs of fit or frail older people?, research commissioned by Welsh Government 38 Bäumker et al, Joseph Rowntree Foundation (2008), Costs and outcomes of an extra-care housing scheme in Bradford 39 Ibid 40 Laing & Buisson, London: Laing & Buisson (2007), Care of Elderly People UK Market Survey 2007 41 Croucher et al, Joseph Rowntree Foundation (2006), Housing with Care in Later Life - A Literature Review 42 Bäumker et al, Joseph Rowntree Foundation (2008), Costs and outcomes of an extra-care housing scheme in Bradford 43 S. Garwood, Housing LIN (2008), ‘Reeve Court Retirement Village St.Helen’s: An evaluation’ 44 Housing LIN, (2008) Reeve Court Retirement Village: Block Contracting Care in Bands & Individual Budgets 45 Prof. V. Burholt et al, (August 2011), Extracare: Meeting the needs of fit or frail older people?, research commissioned by Welsh Government SEWIC Extra Care Scoping Paper v8 - Elle McNeil 21 the SEWIC region to be a means of subsidising the social care costs of extra care, funding a block contract of hours, rather than tailoring to individual housing support needs. This is likely to cause future problems following the Alywood review in Wales, where individualised support is emphasised, potentially jeopardising their ability to provide block contract support to either extra care or sheltered housing schemes. Residents may or may not be better off financially, dependent on factors such as whether they were on benefits, were self-funding, as home owners had kept their former home and therefore had equity available to them or protected their inheritance for their families46. Those who avoided residential care as a result of living in extra care may see more money in their pockets due to not being subject to FACS and charges put on their properties or the majority of their benefits going to pay towards the cost of their care directly, however with higher rental and service charges, they may have less available monies47. A comprehensive report produced by Frontier Economics for the Homes and Communities Agency demonstrates that over the lifetime of a build (given as a 40 year period), it is estimated that the capital costs for any specialist housing provision offers positive net impact savings, mostly in relation to avoiding health costs or admission to institutional settings. The highest savings were offered in relation to specialist housing for mental health or learning disability client groups, though overall due to the numbers involved, developing specialist housing solutions for older people offered net capital savings48. Comparing the cost of build of extra care schemes with traditional sheltered housing or residential care, shows a higher unit cost due to extra care having greater internal floor area per unit and the more extensive communal facilities, resulting in higher rental charges49.

Caution! Changes to Housing Benefit and Council Tax Benefit Welfare Reform changes to housing benefit and council tax benefit could affect extra care housing and its affordability to residents accessing these benefits. These changes will mainly only affect people who are under the pensionable age of 65 (women’s pensionable age is currently varied as it rises from 60 to come into line with men’s by 2018), which rises to 66 in 2020 and further planned rises to 68. The overall rent reductions available through housing benefit is already in place and applies to anyone accessing the benefit. The top level available per local authority therefore will have an affect on the rent chargeable for extra care if staying within affordability for those on housing benefit. From 2013 anyone of working age in a property larger than they require (e.g. two bedroom for a single disabled person in extra care) will see a rent reduction in their housing benefit for under occupation. How the 10% reduction from central government will affect council tax benefit in Wales has still not been confirmed by Welsh Government. It is likely that the overall reduction will only be spread between those of working age, raising their council tax contribution by 20-25%, following the English consultation paper. Therefore, this change would only affect younger extra care residents on benefits. Welfare benefits are changing at a rapid pace, and although currently those of pensionable age have not been greatly affected this may not remain the case. With rising unemployment and projections for the budget deficit reductions counting on larger decreases to the welfare bill than are currently being gained, further benefit cuts are likely, including the possibility of cuts to pensioners. Click to find out more and how this affects disabled people, older people and carers.

46 S. Garwood, Housing LIN (2008), ‘Reeve Court Retirement Village St.Helen’s: An evaluation’ 47 Bäumker et al, Joseph Rowntree Foundation (2008), Costs and outcomes of an extra-care housing scheme in Bradford 48 Frontier Economics. 2010. Financial Benefits of investment in specialist housing for vulnerable and older people. A report for the Homes and Communities Agency 49 Wanless, D., King’s Fund (2006), Securing Good Care for Older People: Taking a Long-Term View SEWIC Extra Care Scoping Paper v8 - Elle McNeil 22 Developing other approaches older people’s accommodation There are a range of accommodation based models of support for older people that meet their needs in different manners, as well as a myriad of options to promote independence to remain at home, such as the use of new technologies, home adaptations and community based support. Outlined below are some of key findings from the literature for consideration.

Developing age friendly communities Completed in July 2011, the All Party Parliamentary Group on Housing and Care for Older People report identified the need for an ‘overarching vision of housing for older people to provide the catalyst for statutory, voluntary and commercial organisations, older people, family and carers to identify and maximise the housing solutions across all tenures for older people’50 with local authorities and local health boards driving the changes forward. Within the recommendations the report drew attention to the need to create age friendly communities through promoting lifetime home standards and working with city / spatial planners to take into account the needs of an ageing society, e.g. using clear street signage and including resting places as part of everyday planning. Work is being done internationally by the World Health Organisation (WHO) to develop guidance and collate information resources on how to create ‘age friendly cities’ and environments which we can learn from. In the context of extra care facilities, they could support those ageing in the community through providing accessible community based resources51. Looking at approaches found abroad in meeting the needs of an ageing society, the below may impact on extra care facilities.

Naturally Occurring Retirement Communities (NORCs) NORCs are becoming an important part of the ageing society debate in the USA, referring to naturally occurring areas of cities where there is a high proportion of older people (50% or more of residents are over 60 years old). In response to these population pockets of older people, support programmes are developed by the communities themselves in partnership with heath, housing and social care. These support elements often include:  A high degree of volunteering by ‘fit and able’ older people to support the more frail elderly.  Effective partnership working between housing organisations, neighbourhood, resident and community development groups, public and private health care agencies to pro-actively promote healthy lifestyles rather than reacting to acute problems.  Mixed funding streams for the support services from government, donations / gifts, in-kind support and corporate sponsorship that collaboratively prioritise and allocate resources.  A central hub in the neighbourhood as a focal point for services and accessing support  A diverse range of additional services accessible to older residents, but not for their sole benefit, often including recreation and leisure activities, education and training, and transport52. Case studies indicate that where effective partnerships are in place to support older people in the community the admission rate to residential or nursing care are below the national averages53 demonstrating the opportunity operating on this basis can offer.

50 All Party Parliamentary Group on Housing and Care for Older People, July 2011 edited by Jeremy Porteus 51 T. Brown, Housing LIN and Keepmoat (2010), Housing an Ageing Population: The Extra Care Solution 52 Ibid 53 Journal of Housing for the Elderly (2010), Special Issue on NORCs (naturally occurring retirement communities, Vol 23 Issue 3 & 4 SEWIC Extra Care Scoping Paper v8 - Elle McNeil 23 Multi-generational housing The Netherlands and the USA are leading the debate on multigenerational housing, both in terms of encouraging mixed age households so that family support is available to older people, and in the development of housing options that encourage interaction between different ages. The opportunity to develop specialist housing that meets the needs of older people without creating ‘ghettos’ for them is highlighted in the HAPPI Report (2010)54 through their review of communities developed in the Netherlands which integrate childcare provision, and community leisure facilities within the same site as older people’s accommodation. This is part of their governmental commitment to developing 0.5 million homes using multi-generational housing by 2040. This can also be seen in Joseph Rowntree Foundations innovative UK development, Hatrigg Oaks, which has a nursery onsite (see case study). With the economic downturn in the UK, an increase in mixed age households is likely, offering older people a strong role within the home as well as support from their relatives. This is already prevalent in the UK within specific cultural groups such as Sikhs, Hindi’s, Muslims and within the Chinese communities reflecting their cultural respect for older people and practice of younger couples living with the father’s family. Developing appropriate support for younger relatives through carers services could enable more older people to remain at home and avoid long-term care admission.

Home ownership and equity release With 69% of 65-74 year olds and 66% of people over 75 owning their homes outright, older people represent the group with the largest purchasing power. It is estimated that there is a total of over £900 billion equity in the value of older homeowners’ homes, which raises the potential to release wealth to meet any future accommodation costs and contribute to the costs of their care55. The National Housing Federation’s work investigating older people’s housing issues (2011)56 breaks them into the following socio-economic groups:  Asset rich and high aspiration older households who are home owners with significant savings and investment, as well as generous pensions. Approximately 60% of households with a head of household over 65 own their properties without a mortgage.  Asset rich (home owners) and income poor households, who have small pensions and low levels of savings or investments. This group struggle to maintain a good quality of life and their homes, unable to meet their change of needs through housing adaptations.  No assets and little income households who often attempt to survive on the breadline. It is estimated that nearly a quarter of older households live below the poverty line. Looking at the older population who own their own homes outright, equity release schemes offer the opportunity for older people to pay for housing adaptations, move to purpose built older people’s accommodation or pay for care at home. The Parliamentary report on Housing and Care for Older People calls for central government to stimulate the development and growth of equity release, private finance and loan facilities for older people, reflecting that this market is underdeveloped57 with few case studies identified within this exercise. Retirement village and extra care models in England (see discussion on tenurship) reflect the aspirations of older people who are owner-occupiers to downsize from their family home to release equity, but still have a property of substantial capital worth to pass on to their families as inheritance. For those that wish to remain in their own homes, options are currently limited for those with low incomes to finance housing alterations or repairs.

54 HAPPI (2010) Housing our Ageing Population: Panel for Innovation – Final Report, London, Homes & Communities Agency. 55 Department of Communities and Local Government (2008), Lifetime Homes, Lifetime Neighbourhoods: A national strategy for housing in an ageing society 56 National Housing Federation (2011), Breaking the Mould: Re-visioning older people’s housing 57 All Party Parliamentary Group on Housing and Care for Older People, July 2011 edited by Jeremy Porteus SEWIC Extra Care Scoping Paper v8 - Elle McNeil 24 SEWIC and extra care Across the SEWIC region nine local authorities already commission extra care schemes designed for older people, with only Rhondda Cynon Taf CBC not operating a scheme. Monmouthshire CBC are currently disputing the status of their 26 unit sheltered housing plus scheme which has been classed by Welsh Government as extra care, therefore removing their eligibility from the top-sliced SHG funding. Including Monmouthshire in the figures, the nine authorities operate fifteen schemes with a total of 676 extra care units for people aged over 55 years old with four schemes offering some units to older people with low level needs associated with dementia. All the schemes are offered on a rental basis only, with funding from the Welsh Government extra care housing scheme subsidies with the exception of Monmouthshire. Officers reported the schemes were populated on the thirds principle where residents are allocated against their social care and housing needs with 33% having high level needs, 33% medium level needs and 33% low level needs. Some difficulty was experienced by all in getting the ‘right’ mix for the schemes, encountering problems with finding residents with higher care needs wishing to move to the schemes. Some authorities managed to move a few residents from residential care to the schemes. Allocation and eligibility criteria focused on both age (55 plus years old) and having housing and social care needs. Management of allocation was consistently managed in partnership between the local authority care management staff and scheme provider/manager. The figures submitted cover only the domiciliary and housing support costs, therefore do not include the additional costs of the subsidised meals provided by all schemes nor associated costs in managing the allocation processes, commissioning and contract monitoring. Due to the difference in the schemes operating parameters of fixed hour contracts to additional spot contracts, or full 24 hour support provided by in-house domiciliary care staff, costs cannot be compared on a like for like basis.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 25 Existing and Planned Extra Care Schemes in Wales

Council and No. of Target Landlord/ Approx. Domiciliary Care – Housing Support – Additional notes Project Units audience / Owner Capital Provider / Hours / Rate Provider Eligibility Costs Hours / Rate notes £million Blaenau-Gwent 41 None Linc- £6.6 £8.38 per unit per week True overall cost of Llys Cyncoed Cymru HA Blaenau Gwent Council in- funded via SP for Llys domiciliary care could not Blaenau-Gwent 44 None United £6.7 house home care. Cyncoed for scheme be provided due to Llys Nant Y Mynydd Welsh HA The in-house salary manager/warden estimated hours/cost of in- Opened forecast for the year is £17,866.16 per annum house provision and spot- August circa £700,000 for 2011 – contracting. 2011 £9.01 per unit per week 2012 covering the cost of funded via SP for llys Nant y Blaenau Gwent Council Llys Cyncoed for 12 Myndd for scheme manager/ delivers most of the months and Llys Nant y warden "enabling" support but Mynydd for 8 months users can if they so wish (August 2011 – March £20,614.88 per annum choose to retain the dom. 2012) Additionally, 30 units receive care provider they were low level SPG via Gwalia using prior to admission. floating support scheme at Where the care/enabling £66,705.60 per annum needs exceed the hours Total SPG = £105,186.64 available "in-house", per annum private sector is used. Bridgend 39 None V2C HA £7.2 Reach Reach Contract not formally Troed Y Ton £12.87 per hour for 300 £13.96 per unit for 1.5 hours signed to date hours per week contract per week £200,772.00 per annum £28,310.88 per annum £11.55 per hour for spot purchasing rate Caerphilly 42 None Charter £4.5 Reach Cefn Glas HA 293 hours per week at Reach is also the provider £12.47 per hour for housing support. £189,992.92 per annum SPG contribution to the Caerphilly 49 Some United £8 Reach housing support element of Plas Hyfryd early Welsh HA 434 hours per week at the total Reach contract is dementia £12.47 per hour £17,342 per annum £281,422.96 per annum

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 26 Caerphilly 37 None Caerphilly £1 Caerphilly Council ‘in-house’ homecare as whole service Tredegar Court Council for domiciliary and housing support provision HA 378 hours per week at approx. cost £18.50 per hour £363,636 per annum Cardiff 60 None Linc- £16,664,651 Reach Linc-Cymru Llys Enfys Cymru HA - 59% grant 225 hours per week £9.31 per unit per week funded minimum contract of 113 £49,300 per annum - 41% HA day hours at £12.34 and SPG funds all eligible units self funded 112 night hours at £16.42 within the scheme (up to 2010/11 total £305,179 102) Cardiff 40 None Linc- £6,758,754 Reach Reach Renegotiating the housing Plas Bryn Cymru HA (64% grant 336 hours a week - 280 £83,200 per annum support contract currently funded and and anticipate a decrease day hours and 56 night £40 per unit per week 36% self hour. £14.69 per hour in the cost funded). 2010/11 total £257,368 Merthyr Tydfil 60 Some with Hafod HA £8 Hafod care Hafod HA Supported housing element Not yet decided early 120 hrs per week for the first will be renegotiated after dementia 300 hours per week at £ 3 months of the scheme at first 3 months to 90 hours per hour £11.48 approx. £25,000 per week to reflect decreased need after the £179,088 per annum initial move

Additional spot purchase at £11.94 per hour Monmouthshire 26 None Charter £468,000 Monmouthshire CBC in- 21 units have housing Classed as Extra Care by Lavender Gardens HA house homecare support funded through SP WAG but not by Council as 189 – 294 hours per week it is not up to Extra care at £22.96 per hour £21,318 PA gross standard and is a refurbished Sheltered £227K - £352K per annum Scheme Overnight response service Cost £241,500 - £366,500 23:00 – 07:00 alerted via per annum if including out careline service (respond of hours response service within 20 mins) Cost of out-of-hours = £14.5K per annum

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 27 Newport 40 None Linc-Cymru £3.1 Newport Council home £31.34 per unit/week - The overall staffing figure Wellwood care provision: £8.92 to landlord for alarm for NCC's extra care is 28 hours for nights, 24 and manager £22.42 to NCC 2064 hours including care hours for days and £65,187.20 PA gross and housing support hours Newport 40 None Linc-Cymru £3.1 evenings. £31.15 per unit/week - Hourly cost for in-house Willowbrook 440 hours per week per £8.73 to landlord for alarm home care provision scheme and manager £22.42 to NCC quoted at approx. £25 £64,792.00 PA gross including sickness / £1,144,000 per annum absence cover and approx. overheads Newport 40 Some Linc-Cymru £4.5 Newport Council home £31.58 per unit/week - Capel Court dementia care provision: £9.16 to landlord for alarm These figures include SPG units and manager £22.42 to NCC funding within the total cost 28 hour contracts for of the staffing costs, nights, 24 hour contracts £65,686.40 PA gross therefore costs per for day and evening staff scheme per annum are: Newport 41 Some Linc-Cymru £4.5 giving a £31.50 per unit/week - Glyn Anwen dementia £9.08 to landlord for alarm Wellwood £553,446.40 units 592 hours per week per and manager £22.42 to NCC Willowbrook £553,841.60 scheme Capel Court £750,547.20 £1,539,200 per annum £67,158.00 PA gross Glyn Anwen £750,241.44 approx Torfaen 35 None Melin £6.2 Hafod care Hafod Care Additional costs include Ty George Lansbury Homes £272,883 per year. £68, 796 for the daily £28.51 per unit per week lunchtime meal. 300 hours per week - funded via SP waking night and sleep in allowance. £51,888.20 PA gross Vale of Glamorgan 40 - Not yet Hafod Care £7 Not yet appointed Two further extra care Cinema Royal 42 known The extra care scheme funded by Welsh Government is schemes are being not due to start the build until 2012 considered to meet the needs of older people

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 28 Learning points from around the SEWIC region From discussion and correspondence with officers from across the SEWIC region working in planning, commissioning, service development and supporting people, the following learning points were identified:  Having a dedicated project manager would be beneficial for new developments o Many developments have been overseen by people with existing roles as an ‘add on’, causing capacity issues and delaying response times to issues as they arise.  Having specialist support from estates and housing colleagues to assist throughout the project has proven beneficial where incorporated o Where social services staff led on the developments with reliance on the housing association, concerns were raised in relation to inequality within the relationship and reliance on the provider who may have a different agenda to the funder.  Contracting and commissioning the domiciliary care and housing support provision via block contracts has raised concerns about value for money, as estimating the needs without the known residents in situ has lead to over payment (perceived and known) for services on some occasions o It has been suggested that spot contracting, or contracting on bands of need for service users may overcome this issue – this reflects the literature findings o Some concerns were raised in relation to the fit of block contracting for residents where no, or minimal housing or social care needs were identified against the increased focus on outcome based assessment and tailoring packages to fit individual identified needs through unified assessment or supporting people o Getting a mix of residents to fit the commonly used thirds model has proved problematic with a common issue of getting the third with high care needs to move into extra care – this increased concerns in relation to block contracting o As the Swansea university findings reflect, where housing and domiciliary care are commissioned separately there have been issues of the need for cross-over training and flexibility in meeting needs. This will overcome issues such as housing staff not assisting residents on some tasks (e.g. if a resident falls), and questions over domiciliary care staff’s ability to assist with housing based issues.  Engaging health has proved problematic, limiting their involvement in the finished schemes and the possibility for supporting the national drivers of locality and joined up delivery of services to enable citizen centered support o Limited joint funded schemes has meant schemes have not been able to develop holistic services, such as step-up/step-down facilities to prevent hospital admission and assist in DTOC.  The continued use of supporting people funding to block contract housing support for schemes is in doubt due to the Aylward Review and the need to tailor support on an individual basis of need o Pressures of supporting people funds and the need to respond to other client groups needs was highlighted, in particular meeting the needs of clients with mental health problems, experiencing domestic violence and those with drug or alcohol problems.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 29 SWOT analysis of extra care for the SEWIC region

Strengths  An additional supportive model to maximise the independence of older people  Ability to meet social care and housing needs in a supportive and enabling manner where the care is provided with the purpose and focus of enabling socialisation – widows in particular are noted to have reduced social isolation within the schemes  Schemes can add to community regeneration, intergenerational work and add to community resources  A developing model with the ability to provide an alternative to traditional services when tailored to meet demands, needs and fit to local communities

Weaknesses  No proven cost savings benefits to social services  Current models in Wales are not meeting the needs of either the physically or cognitively frail elderly as well as home care or residential provisions  A lack of health engagement in the current work within the region  The fit to unified assessment / care programme approach and supporting people assessments and tailoring care packages to meet individual needs – the fit with direct payments and personal budgets

Opportunities  Meeting niche client category needs such as older people with a learning disability or younger people with a dementia (in particular those with Korsakoff's syndrome) o Working with health to secure capital and revenue, such as CHC funding, funding in recognition of the prevention agenda, co-location of services or savings from off- setting delivery costs o Developing a hub for specialist services for older people  Training and skill building with extra care staff and social work staff could increase current ability to meet higher care needs  If linked to communities first agenda’s and areas, developing schemes as wider community resources could meet multiple needs  Working with health, housing strategy and planning, housing associations and UK wide not- for-profit organisations focused on supporting older people to encourage the development of mixed tenured or privately rented retirement villages inclusive of extra care

Threats  Reduced revenue and capital funding available to local authorities  Welfare reform altering the level and distribution of housing benefit and council tax benefit – additional changes under Universal Credit and Personal Independence Payments replacing incapacity based benefits could reduce individuals’ income streams  A lack of long term cost analysis limits the ability to project any savings forward

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 30 Appendix 1: Case Studies Case Studies: EMI focused extra care Duddon Mews Extra Care Scheme in Cumbria Scheme Background Duddon Mews is a small 14-unit extra care scheme offered on a rental only basis, primarily targeted at older people with dementia, adjoined by the Jubilee Centre comprising a suite of offices and a specialist day centre for people over 65 years of age with mental health problems including early onset dementia. The scheme is located in the small (pop. 8,500) town of Millom, isolated on the Cumbrian coast with poor transport links and high levels of deprivation. A service gap for older people with mental health problems was identified alongside the opportunity to redevelop on site of an obsolete sheltered scheme using Department of Health capital investment monies. Working in partnership, a development group was formed of local people, representatives from voluntary and statutory organisations including health, social care, and a housing association. The scheme targets older adults with complex health and social care needs requiring care and support. Allocation is handled by a multi-disciplinary panel after a needs assessment, aiming for mixed ability of residents to fit within the block contract for domiciliary care (252 day time hours (7.30a.m. – 10.30p.m.) and 126 night time hours). Although the scheme focuses on older people with mental health problems (it is not exclusively for dementia clients) this is not explicitly stated within its literature in order to avoid stigma associated with mental ill health. Preventing stigma of residents is further underlined through the adjoining Jublilee day centre which is a local community resource, and work carried out with the local community to ensure the safety and inclusion of residents within Millom.

Reported positives and negatives of the scheme The Housing LIN’s case study highlighted a number of positives and negatives lessons to be learnt: Positives: Learning Points  The scheme was viewed as a local community resource due to its location in an area of social housing, in a small community which respected and supported by its neighbours. On the rare occasion when a tenant has been out and looking lost, someone has recognised them and accompanied them back to the scheme.  A good community mix has been established, perhaps due to the majority of tenants coming from Millom and already knowing one another. This has helped to minimise stigma being attached to the scheme and high levels of mutual support and tolerance within it.  Partnership working established good relationships from the start, adopting a problem-solving approach to developing the scheme.  The scheme meets a wide range of needs some with high levels of need at the point of entry. It provides a quality, individually tailored, specialist service to residents, aiming to prevent the need for tenants to enter into residential care away from Millom and social support networks.  Involvement of the Older People’s CMHT in the development of the scheme, as members of the allocation panel, and actively supporting both tenants and staff has ensured access to specialist dementia knowledge, training and staff.  Awareness of mental capacity issues is noted throughout the evaluation as important to all partners, as was work with the local community to raise awareness and understanding.  Standard non-residential charging policy was applied, emphasising that the care at Duddon Mews is domiciliary care and it is not a registered care home.  Maintaining people in the community was achieved for the majority of tenants during the evaluation period (2005 – 2008), with tenants only being moved on as a result of significant increase in physical and mental needs following hospitalisation.

Negatives: Learning points  Better engagement with senior staff from the Mental Health Trust during the development phase of the project was advised. This could have secured an intermediate care flat if the Trust had contributed financially to help with discharge from hospital via a step-up/step-down facility. Adverse affects of a lack of clarity on case co-ordination could also have been avoided.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 31  Agreements between partners should be in writing to ensure shared use of certain facilities continues after the initial partners move on and new incumbents move in.  Better communication and publicity at the development stage to minimise unrealistic expectations from both professionals and families as to what the scheme can and cannot provide. Greater clarity on the full cost to residents was also noted as an issue with potential residents and staff not having clarity on how charging for care, housing support services, rent and service charges added up.  Partners continue to meet to enable ongoing inter-agency liaison at a senior level to resolve any problems and provide leadership, ensuring the project continues to grow and develop.  Developing a slightly larger scheme (20 units) would prevent the number of people accepting alternative provision such as residential care and care funding more cost-effective due to economies of scale, without significantly impacting on the homely feel.

Shore Green Extra Care Scheme in Manchester

Scheme Background Shore Green is a small scheme with 10 units (six 1-bed flats and four 2-bed bungalows) scheme providing specialist care service for older people with dementia and other memory loss conditions. The scheme is located in Manchester and was the result of a sheltered housing review which saw two former sheltered housing schemes being remodelled as extra care facilities for older people in 2003.

A service gap for older people with dementia was identified alongside the priority of needing to reduce unnecessary admissions to residential and nursing care for people with mental health problems. The development fit the strategic drivers of promoting choice, control and independence for people with dementia and enabling families to remain together after one has developed high needs as a result of dementia rather than the couple being separated when one enters nursing care.

Working in partnership, the scheme was developed by a housing association social services and health taking on board specific design features recommended by the Alzheimer’s Society, including:  Telecare monitoring devices, such as gas monitors (cutting off the gas supply if a cooker is left on), door sensors to alert night care workers if a tenant has opened a door  Colour coding and personalisation (shelves/cubby holes with personal items) at the entrances to each flat to help each tenant identify their door  Glass fronted kitchen units so tenants can see which cupboards items are kept in  A single secure entrance and exit to ensure the safety of residents both in stopping unwanted visitors coming in and by reducing the risk of tenants wandering, and  A visitor sleepover facility so friends and family can visit the tenants, facilitating continued contact and reuniting people on occasions after contact had been lost.

Housing support is provided by the Housing Association funded through Supporting People. Specialist dementia trained domiciliary care is provided for 204 day care hours per week, averaging at 18.5 hours per resident per week, although varying greatly between tenants each day according to need, i.e. the model is very flexible and is person centred. 63 waking night hours per week are also provided, allocated as one person working 9 hours each night.

Reported positives and negatives of the scheme The Department of Health’s case study highlighted a number of lessons to be learnt:

Positives: Learning Points  Design features were perceived as important, with staff perceiving a new build as an advantage as it enabled desirable design features to be incorporated from the outset, such as: continuous pathways in the garden so tenants never reach a dead end as this can cause confusion/distress; a distinctive high roof visible in the neighbourhood to help tenants find their way home after local visits e.g. to the local church.  Location was key to the scheme’s success in enabling tenants to be able to enter into community life if they want to; including ensuring the physical environment was safe when tenants leave the site. Work with the local community to ensure they are supportive and understanding of dementia was required.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 32  Specialist Dementia ECH aids staff to develop specific skills and diverts people away from expensive nursing home placements.  Flexible levels of care based on outcomes is secured through the contract not specifying how hours are to be used, and if less hours are used less are paid for. Staff are on site and judge each person’s needs accurately on a day-to-day basis.  Maintaining people in the community was achieved for the majority of tenants during the evaluation period (2003 – 2009), with tenants only being moved on as a result of significant increase in physical and mental needs following hospitalisation.  Reduced NHS Activity was shown for the tenant group with fewer A&E attendance or hospital admissions in comparison to estimated average useage for people with a dementia. The review concluded that the Shore Green model appeared to reduce demands by people with dementia for hospital services. Negatives: Learning points  Better publicity and allocation decisions could help to more fully utilise the bungalows as, at present, only one has a couple living in it.  Developing a slightly larger scheme would have been more economically viable as there would be more economies of scale and the mix of support needs would be wider and therefore easier to manage. A larger scheme would, however, need a different care team structure.

Case Study: Sensory impairment focused extra care Hillside Court Scheme Background Hillside Court is located in Bristol and provided by Housing 21. An open access model for those over 55 years old, it specialises in providing accommodation for people with hearing impairments. It has 8 of the total 49 flats equipped with special technology designed to support people with hearing impairments. The scheme also includes a full catering restaurant which is open to both members of the scheme and the surrounding community. Housing 21 is a not for profit social enterprise specialising in providing homes and services for older people that maximise independence and control. They have a number of schemes across England for both rent and sale. The Hillside Court scheme was developed in partnership with Bristol Council as part of their extensive older people’s supported housing scheme (28 units across the region) which offer housing related support and domiciliary care on differing levels dependent on identified need through assessment care management. NB: Awaiting further details from Bristol Council

Case Studies: Learning disability focused extra care Hartlepool Scheme Background Designed on a shared equity supported housing option offering the opportunity to own up to 75% of the value of the property. The scheme is redeveloping a vacant church site to provide six flats for people with learning disabilities (for sale), along with 12 general needs properties and a parish hall. The properties are aimed at learning disabled adults living with older carers. The concept is to create a small mixed community in a lively area of Hartlepool. The local authority will have 100% nomination rights to all the properties. The parish hall is for the local community but also accessible to residents, thus providing part of the ‘facilities’ associated with extra care housing. It is being developed in partnership with Three Rivers Housing Association, social services, health and the families of the learning disabled adults considered for the scheme. The scheme had not been completed at the time of the Housing LIN’s evaluation report notes building work, therefore only an outline of the proposed service is available, which notes the apartments will be two bedrooms to allow a carer or support worker to sleep in or live with the disabled person if this becomes necessary or simply to allow a friend or relation to stay. On this basis and the design and layout of the flats, it is anticipated that it will be possible to support most people in this scheme for many years, unless they become physically very frail and live on the first floor (the small scale and cost of development has not permitted

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 33 the installation of a lift.) Facilities include the provision of staff office and accommodation on site. Residents will be able to access Direct Payments and shortly Individual Budgets to arrange their own package of care should they wish and will not be tied to using a particular care agency. Learning points  Time taken to establish a shared equity scheme and the cost-value equation where the cost of the units to build exceeds the local housing market evaluation for the units requiring funding to bridge the gap to achieve Housing Corporation standards and desired outcomes for the units.  Engaging carers was noted as difficult until there is something real to show. Showing plans, even of 3D designs, is not sufficient to generate interest and secure shared equity tenancies.

Pennine Court Salford Scheme Background Remodeling an existing 23 bed-sit sheltered scheme, Pennine Court includes specific provision of four extra care dwellings and some facilities for older people with learning disabilities. The four flats for the extra care housing (learning disabled) tenants are clustered together close to those communal facilities thought particularly relevant to this group of residents. It is designed for people with learning disabilities as they age, not simply those with older carers. Special attention was paid to the design and fittings of the four ground floor flats earmarked for people with learning disabilities but the whole scheme and communal facilities are designed to be accessible and ‘dementia friendly’, to enable people to continue to live there as they age and if they develop dementia. Developed in partnership with Salford City Council (supporting people and community care), the Learning Disability partnership planning group ‘Where People Live Group’ and English Churches Housing Group. The domiciliary care is commissioned privately with clearly defined, measurable outputs and targets including:  Integration of residents within the scheme  Developing community links  Developing and encouraging relationships and friendships  Increasing take-up of education and leisure activities  Reducing social isolation, and  Improving the quality of life and self-esteem of service users Outcomes are judged as positive to date with one un-anticipated result being an improvement in family relationships and contacts for two of the four learning disabled tenants: “Visiting a self-contained flat in Pennine Court is very different to visiting someone in a care home.” Learning points  Involving service-user and their parent-carers in meaningful consultation was difficult due to the length of timescales involved. Wider consultation on design and the finishing of the schemes was advised for any future similar initiatives.  Handover issues of the care provider required planning and took a considerable length of time. The tenants had previously lived in Salford’s in-house supported tenancy network with strong supportive relationships with their staff. A transitional staff team was therefore created of existing staff known to the tenants for a settling in and hand over period, which they recommend being for a period of four weeks.  Always have a reserve list of tenants in case the target audience or proposed tenants become unwell or experience rapid decline during the process of establishing the tenancies. Having a ‘reserve List’ of tenants with their families already consulted and signed up to the scheme ensures the scheme will not hold vacancies.  Be aware of the pace of change of assistive technology as adapting technologies once installed can be costly and time consuming. Individual’s needs also change and ensuring the recording and monitoring ability of the assistive technology to keep pace with them can prove challenging.  Partnership working is key and building trust and developing an understanding of each others areas of business is invaluable to the project development. Partners have to be flexible, as the timetable will change. The concept of ‘Extra Care’ is difficult for some professionals, service users and relatives to understand; expect some negativity, change is very difficult and can be worrying to those involved. Be patient, understanding and support each other. Keep talking.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 34 Case Studies: Mixed tenure Avonpark Village Scheme Background Avonpark Village is situated on the outskirts of Bath, developed by Retirement Villages, a not for profit retirement village and care provider specialist. The scheme consists of a mix of studio, 1, 2, and 3 bed properties available for leasehold purchase, a residential and nursing home and dementia unit. Short (1 year assured short-hold tenancies) and longer term rentals sit alongside extra care placements part funded by the local authority via an assessment of need. The retirement village is for people aged over 55 and has extensive on site social facilities including restaurant, library and visiting doctors’ surgery as well as assisted living provision of Telecare, the availability of 24 hour support. Residents pay a service charge which includes a contribution to the running costs of the village's facilities, support services and building's maintenance. The charge is operated on a strictly ‘not for profit’ basis, in accordance with legislation, therefore it only reflect the actual costs of providing the services. Personal care is delivered in residents’ homes on a ‘pay as you go’ basis tailored to suit the individual’s needs. The Retirement Village Care Manager arranges the care packages, including costing the additional services provided. When a situation deteriorates and independence diminishes to the point where permanent care is needed, transfer within Avonpark to a residential unit is possible, or where only one of a couple occupying a property is unable to look after themselves, as long as the carer is able to cope with assistance, they can remain within their own home. Residents can access Direct Payments or Individual Budgets to arrange their own package of care, they are not tied to using a particular care agency.

Westbury Fields and Monica Wills House Scheme Background St Monica’s Trust a not for profit organisation with charitable status who worked in partnership with Bristol City Council on their Very Sheltered Housing initiative to develop two schemes in Bristol. The Westbury scheme houses over 200 older people and consists of 150 flats available for sale, shared ownership and to rent, and an 80 bed general needs care home which incorporates 15 bed dementia specialist unit and 12 bed short-term nursing care unit. The properties are laid out around a central cricket field complete with the Cricketers restaurant in the pavilion as well as onsite access to a gym, spa pool, and an activities program. Telecare and 24 hour emergency assistance is available alongside 51 dedicated extra care units, a small number of which are available for purchase on a shared ownership basis. Monica Wills House consists of 121 purpose built adaptable 1 and 2 bed apartments, all with level access showers in a five storey building. There are 50 extra care flats available at Monica Wills House a small number of which are available for purchase on a shared ownerships basis, and all others on a rental basis. Telecare and 24 hour emergency assistance is open to all residents alongside a care at home service offering individually tailored supportive care packages to residents. Additional facilities onsite include a pool, gym, roof garden, restaurant hairdressers and program of activities. Case Study: Insurance model for care Hartrigg Oaks, York - Joseph Rowntree Foundation Developed by Joseph Rowntree Foundation (JRF) and the Joseph Rowntree Housing Trust (JRHT), Hartrigg Oaks opened in 1998 as the first Continuing Care Retirement Community (CCRC) in the U.K. Hartrigg Oaks is a community within a community, with 240 people (all over 60) living together in an environment that provides security, stimulation and care for life. There are 152 bungalows, The Oaks Centre (a 42 room care home), and a range of communal facilities, including onsite nursery, shops, restaurant and leisure facilities. Much scrutinised about by JRF and others, a summary is given below. Scheme Background JRF and JRHT invested over £19 million (at 1998 prices) to create Hartrigg Oaks, a retirement community with housing options for older people designed to enable them to live in their own home within a stimulating wider community setting. As part of the model, integration with the local community and intergenerational work is emphasised, as seen by linking fluent foreign language residents with

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 35 local younger learners, and residents offering mock academic and job interviews for sixthform students as part of the school’s career programme. It offers residents care and support if and when they need it, up to a level previously only available in residential or nursing homes. Very similar to extra care schemes, the main difference is in part the ethos of the community developed (and therefore its residents), but also its finance model which has not been replicated since. Hartrigg Oaks operates a ‘pooled finance’ model which gives residents have peace of mind about care costs by having be no increase in fees if they do need care.

The Financial Model This information is taken from Michael Sturge’s chapter ‘Finance’ within JRF’s book entitled ‘Do Retirement Communities Work? Hartrigg Oaks: The First Ten Years’. The JRHT Trustees in 1998 set out to ensure that Hartrigg Oaks would be self-sufficient not-for-profit making venture, without capital subsidy from the Government or charitable organisations and where the capital and ongoing repairs and improvements would be funded in a balanced way between initial and future residents. Furthermore, that it would be: affordable to as many older people as possible; have various options to meet differing financial circumstances and aspirations; and aim to reduce the financial worries and uncertainties of older people about their future care needs. Two fees are payable by residents. One covers accommodation, the ‘Residence Fee’, and the other covers services, care and support, the ‘Community Fee’. There are three options per fee as below: Residence Fee options all cover the occupation of a bungalow and the use of a room in The Oaks if needed. The fee varies dependent on the size and position of the bungalow, and is linked to the market value of equivalent property in the area.  Refundable (one-off) payment. The full fee is repaid in money to the residents or their estate, on leaving Hartrigg Oaks. Repayment is not dependent on selling the bungalow to new residents.  Non-refundable (one-off) payment. Less than the Refundable Residence Fee above, it is based the individual’s joining age, being lower at older ages. Partial repayments can be made to the resident, or their estate on a declining basis, if they leave within the first 56 months of residence (but no sum thereafter).  Annualised (monthly payment). This annual fee (equivalent to a rent) is calculated from the amount of the Refundable Residence Fee for each bungalow. Community Fee options are payable monthly, and have two components. Firstly the ‘Common Contribution’ which pays for running costs – e.g. repairs, maintenance and improvements to bungalows and communal areas, buildings insurance, administration, etc. Secondly, the component which covers the care and support services, either in a resident’s own bungalow or at The Oaks. The 3 options are:  Standard – where the fees for all residents choosing this option operate on a pooled basis so that the fee is independent of the actual amount of care support which any individual receives. The fee is related to an individual’s age on joining, with a higher fee at older ages.  Reduced – where individuals may pay an additional non-refundable capital sum in exchange for a reduced Standard Community Fee throughout their period of residence. Up to 50% of the Fee may be paid in this way; couples may allocate the reduction between their two fees in the proportion which they choose.  Fee for Care – where residents are charged on a ‘pay as you go’ basis for care services

Self-sufficiency Due to bungalow sales far exceeding their forecast amount, reflecting sharply rising house prices across the UK, and the care and support needs of residents increasing at a lower rate than estimated, the ten year review in 2009 found Hartrigg Oaks a sustainable model making its capital repayments on time and meeting its ongoing running costs. Annual increases to the Community Fee have been less than the maximum level (3% above the Retail Price Index) set by JRF and JRHT since opening, ensuring the model is both affordable and sustainable. To increase the affordability to residents JRF established the Hartrigg Oaks Charitable Trust in 1998 via a £50,000 donation. The Trust is designed to help residents experiencing financial difficulty in meeting their fees. Annual transfers are made from Community Fee payments of £10,000, with the Fund holding £195,000 in 2009.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 36 Case Study: Equity release scheme London Rebuilding Society ‘equity swap’ London Rebuilding Society (LBS) established in 2001, is a Community Development Finance Institution operating as a not-for-private-profit social enterprise. In partnership with several local authorities in East London, it offers a home improvement scheme for low income or vulnerable homeowners whose homes are inadequate to meet their needs or in disrepair. In exchange for a percentage of the equity in the homeowner’s property (an ‘equity swap’), LRS manage the entire works process, arranging temporary accommodation and storage as required. Repairs and improvements are financed through an equity reversion mechanism (an equitable mortgage) where LRS establishes the cost of the work as a percentage of the improved value of the property. They meet all costs upfront, recouping this later as a percentage of the property’s value when the homeowner sells their home.

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 37 References All Party Parliamentary Group on Housing and Care for Older People, July 2011 edited by Jeremy Porteus Bäumker et al (2008), Costs and outcomes of an extra-care housing scheme in Bradford, Joseph Rowntree Foundation Baumker, T., Netten, R. and Darton, R. (2010) Costs and Outcomes of an Extra Care Housing Scheme in England, Journal of Housing for the Elderly, Vol 24 Issue 2, pp 151-170 Blood, I. (2010) Older people with high support needs: how can we empower them to enjoy a better life, York, Joseph Rowntree Foundation T. Brown (2010), Housing an Ageing Population: The Extra Care Solution, Housing Learning and Improvement Network and Keepmoat Prof. V. Burholt et al, (2011), Extracare: Meeting the needs of fit or frail older people?, Welsh Government Care Services Improvement Partnership (2006), The extra care housing toolkit Care Services Innovation Partnership (2008), ‘A Measure of Success an evaluation of the Department of Health's Extra Care Housing Programme for People with Learning Disabilities’ Croucher et al (2006), Housing with Care in Later Life - A Literature Review, Joseph Rowntree Foundation Department of Communities and Local Government (2008), Lifetime Homes, Lifetime Neighbourhoods: A national strategy for housing in an ageing society Department of Health National Dementia Strategy (2011), ‘Extra Care Housing and Dementia Commissioning Checklist’ R. Dutton (May 2009), ‘Extra Care’ Housing and People with Dementia – A scoping Literature Review, Housing and Dementia Research Consortium P. Fowler (2009), ‘Rowan Court: A specialist extra care dementia scheme in Hampshire’, Journal of Care Services Management, Vol. 3 No. 3, p275 – 283 Frontier Economics. 2010. Financial Benefits of investment in specialist housing for vulnerable and older people. A report for the Homes and Communities Agency S. Garwood (2010), ‘A better life for older people with high support needs in housing with care’, Joseph Rowntree Foundation S. Garwood (2008), ‘Reeve Court Retirement Village St.Helen’s: An evaluation’, Housing Learning and Improvement Network HAPPI (2010) Housing our Ageing Population: Panel for Innovation – Final Report, London, Homes & Communities Agency Housing Learning and Improvement Network (2010), Assessment and Allocation in Extra Care Housing Housing Learning and Improvement Network (2006), Developing Extra Care Housing in Cheshire through public/private finance: the PFI route Housing Learning and Improvement Network (2008), Duddon Mews Extra Care Scheme for People with Mental Health Problems and Physical Frailty in Cumbria Housing Learning and Improvement Network (2003), Extra Care Strategic Developments in East Sussex Housing Learning and Improvement Network (2008), Extra Care Housing: What is it?

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 38 Housing Learning and Improvement Network (2008), Reeve Court Retirement Village: Block Contracting Care in Bands & Individual Budgets Housing Learning and Improvement Network (2006), Transforming services for older people: floating support - Broadacres Housing Association Older Persons Floating Support Housing Learning and Improvement Network (2008), Whose Market? Understanding the demand for Extra Care Housing: A Strategic Approach Housing Learning and Improvement Network (2005), Yorkshire & the Humber Region Extra Care Housing Journal of Housing for the Elderly (2010), Special Issue on NORCs (naturally occurring retirement communities, Vol 23 Issue 3 & 4 Laing & Buisson (2007), Care of Elderly People UK Market Survey 2007, London: Laing & Buisson J. Manthorpe and J.Moriarty (2010), Appendix 4: ‘Workforce issues in housing with care for adults with high support needs’ in ‘A better life for older people with high support needs in housing with care’, Joseph Rowntree Foundation M Mathias, Kafka Brigade UK (2011), Breaking through Bureaucracy: Involving the Citizen: Empowering Frontline staff: Unleashing Change – A report for Community Housing Cymru Group National Housing Federation (2011), Breaking the Mould: Re-visioning older people’s housing Personal Social Services Research (PSSRU), University of Kent (2009), Evaluation of the Extra Care Housing Initiative J. Rankin and S. Regan (2004), Points/ Institute of Public Policy Research (IPPR), London, Meeting Complex Needs: The Future of Social Care. Turning Shelter Cymru (2011), The cost of poor housing in Wales E. Trotter et al, (1998) Remodelling sheltered housing, Housing 21, London. Wanless, D. (2006), Securing Good Care for Older People: Taking a Long-Term View, London: King’s Fund H. Wojgani and J. Hanson, UCL (2007), Extra Care Housing: A paradigm shift

Resources Both the RNIB and RNID have a number of guides available online, offer a specialist advice service and can be approached to work in partner

The Housing Housing Learning and Improvement Network (LIN) website contains a useful array of material, including:  Extra care housing toolkit with examples, checklists, tools and guidance  A resource library containing case studies, evaluations, toolkits, DVD and youtube links available to search by client category

SEWIC Extra Care Scoping Paper v8 - Elle McNeil 39