What Matters Most Supporting individuals, families and staff have a - - PDF document

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What Matters Most Supporting individuals, families and staff have a real say over services for older people with a learning disability By: David Douglas Director Heartfelt Limited/Quality Checkers Team

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CONTENTS  Introduction and Background – Pages 3-4  What we did and how we did it – Pages 5-6  What individuals and families told us Pages 7-9  What frontline staff and managers told us Pages 10-20  Emerging themes and recommendations Pages 21-25  Conclusion Page 26

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Introduction and Background This report, in partnership with East Ayrshire Quality Checkers, captures what people who use, or may use in the future, older people’s services for individuals with a learning disability in East Ayrshire, their families and workers have said about their hopes for those services. Our intention was to do this in a real and meaningful way so that those services are designed and delivered from the perspective of the people using them, their families and those with a responsibility for designing them. Alongside this, there is a need to develop an approach that identifies what is working well (so that we can keep it), what is not (so that we can change it) and feed this back to East Ayrshire Council. It is also important that the findings are used to support East Ayrshire to effect real and meaningful change in services that cater for the learning disabled population as they grow older. In particular, this proposal aims to:  Find out what really matters to individuals, families, frontline and senior management in terms of developing older peoples services for individuals with a learning disability.  Identify what is working well/what needs to be changed/ideas for repositioning East Ayrshire for the future development of those services.  Make sense of all information gathered, compare and contrast with other areas and prepare report and recommendations Central to all of this, will be the meaningful involvement of individuals and their families in a way that makes sense to them.

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In summary, the key aims of our work was an attempt to:

• Evaluate how well services are meeting expectations of individuals

and, to a lesser degree, their families and other stakeholders and what kind of model for older people’s services makes sense to individuals with a learning disability and fits with their needs, hopes and ambitions.

• Assess, from the unique perspective of individuals, families,

workers, managers and other stakeholders what things are like just now, what they would like them to be like and their ideas for getting there.

• Use this information to inform and advise how services develop

locally.

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What we did and how we did it TARGET GROUPS – INDIVIDUALS, FAMILIES, SUPPORT STAFF and SENIOR MANAGERS Structured interviews with individuals with a learning disability, families, front-line and senior management 2 Focus groups – individuals and families/East Ayrshire staff and staff from other organisations e.g. the advocacy service Questionnaire for individuals, families and staff Identify emerging themes, recommendations and production of report Central to all this work was the active involvement of East Ayrshire’s Quality Checkers group. The group, made up of individuals family carers and relevant staff, designed the questions to be asked, led the interviews and co-delivered the focus groups when possible. The idea behind the Quality Checkers is that their years of hard-earned experience places them in a unique position to determine what really matters most in service provision.

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The areas we looked at in our interviews, questionnaire and focus groups:  In your opinion, what is good about the support individuals with a learning disability, over 65, currently receive?  In your opinion, what do you think could be better?  What about where people live – do you think there is enough suitable places for people and are we able to meet their choices? For example, where do most people with a learning disability over the age of 65 currently live – on their own/with someone else/with a group/with family?  Do you think current housing options and services will meet individual needs in the future?  What kind of things do you think should be available in the future? This includes day opportunities; care at home packages; housing support; care homes; community involvement; self-directed support options?  What would your vision be for individuals over the age of 65?  How do you think money should be spent with/for people with a learning disability over the age of 65 in the future?  What do you think the key priorities should be? Individuals and their families were asked to identify the core principles of what any future provision would look like, while workers and managers would try to unpick the detail of what that would look like and how it may happen; a vision determined by individuals and their families and a strategy to make it happen designed by workers and managers.

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What is working well just now? Individuals and families said… I feel safe and secure Support is there when I want it I like the company I have my own house I can go bowling I get to see some of my friends I can get to the centre with my friends Going for lunch with friends and workers Playing bingo together with my neighbours The common lounge/room Good support and freedom Knowing my son is looked after Good planning that involves the family

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What needs to get better/not working well? Individuals and their families said… Doing things with people my age does not always happen Too many boring meetings Not enough staff Staff leaving Being told I am too old to go to places Not enough things to do Not enough money My son needs are changing and there seems no plan to tackle this Families are worried about the future and it makes them stressed No common room to meet my friends and neighbours

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Ideas for making things better and the type of future individuals and their families want What individuals and their families said… Somewhere I can feel safe A home of my own but with friends and workers right on my door step To know my children will be looked after To have a safe place to go with friends To do things like bowling and tea-dances in the community To be not rushed about To get support to do go to doctors and pay bills To still be able to go to the centre every day To not go to the centre every day To choose my workers To have friendly, nice and not bossy workers A plan for older people with a learning disability, like my son, that we will all stick to

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In questionnaires, focus groups and interviews, individuals and their families tended to talk more generally and did not follow the questions or format as strictly as workers and managers – this is fine and reflects the need to have a consultation that fits in with the skill and experience of those involved rather than have them being made to fit in with the consultation methods. The Quality Checkers believe this is vital so that we avoid tokenistic or ‘pretend’ consultation. A result of this is more detailed answers from workers and managers and a tendency to systematically go through questions, and this is illustrated in the information that is presented here. What workers and managers said in the questionnaires? Question 1 In your opinion, what do you think is good about the support individuals with a learning disability over the age of 65 years currently receive? A safe community environment LDS – No upper age limit, allowing the team to work with individuals from young adults to older adults without the need to transfer to elderly services. People can have their friends around them There is good opportunities to try new things Over 65s can live alongside their friends, keep contact with families and connect with people they have a shared history with It is good for people’s well-being Over 65s have the opportunity to be supported in their own tenancies People have the opportunity to be supported/advocated for by well- trained/qualified staff who they have known for many years. This includes an excellent network of health professionals, accessed by their care staff to ensure their needs are met effectively Participants were also asked to rate this support using the following scoring system: Great 5/ Good 4/ OK 3/ Not Good 2/ Rubbish 1 10% said great/80% said good/10% said OK

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Question 2 In your opinion, what do you think could be better? People’s changing needs as they get older and keeping pace with this It would be better if we could provide a quieter, calmer and less busy environment The choice of accommodation is limited, sought after and people are living longer therefore better forward planning is needed Services more individualised and focused on need, the diverse nature of this group makes that more difficult More groups aimed specifically at that age group e.g. memory groups More power to frontline staff who know the issues People should be able to retire from day centres at 65 but do not as other

• ptions in East Ayrshire are so limited

At the moment, the support individuals get could not be any better More options should be available other than day centres after individuals are 65. More drop-in day centres that does not restrict individuals to early starts There would appear to be limited services for older adults. In addition to this, adults with LD given their health and wellbeing, may appear older than their age, are unable to access mainstream services for older people given the age range, i.e. someone with Down Syndrome may be appropriate for older people’s group/service but cannot access this as they aren’t over 65. Transport, street lightening, uneven pavements discourage older people from going out/accessing services/activities

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Question 3 What about where people live – do you think there are enough suitable places for individuals with a learning disability over 65 and are we able to meet their choices? What about future housing provision? More places like Thomson Court, Cuthbert Place and Lilyhill should be made available There is not enough choice of long-term accommodation e.g. there are

• nly 10 long-term housing support beds available (Berryknowe) for

individuals who wish to live in a housing support service with staff on hand to meet their needs Individuals who live in the community have access to day centres and

• ther activities. There is also a ‘core and cluster’ model where people can

use the support of the carers employed there as well as come together with neighbours as a group We, as a local authority struggle to give older people real choices Would be great if there were more sheltered housing complexes. Core and Cluster models should be increased in the future giving people the security of knowing someone is available if required(travel time and mileage is also reduced if people live close to each other) Waiting lists for accessible housing is too long We are not giving people what they want – services seem stretched, resources are scarce and we have an ageing population generally

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Question 4 What kind of things do you think should be available in the future for people with a learning disability over 65 years? For example, day opportunities, housing options, care at home packages, housing support, care homes etc. We need day opportunities that give people a purpose to their day, develop friendships and increased contact with the local community We should develop care at home packages and benefit from free personal care/support at home More sheltered housing and ‘core and cluster’ models and more residential care that would free up hospital beds Housing - Again age restrictions, given the LD population may appear

• lder than their age, they are unable to access sheltered housing

accommodation if under 65 despite this being appropriate to their needs. Current core & clusters appear to be filled in the main by young adults who require high levels of support. There is no such facility for older adults Housing – current & future needs – there is a huge demand for more supported accommodation, with gate keeping type facilities and access to support staff as required. Also the Moving On Service is a great facility however with only 4 spaces for LD and 4 MH people often miss out. As a result of funding restrictions individuals will require to share housing and services more than they do at present More day opportunities with transport. More varied transport generally with more investment in day centres that cater for this group Over 65s may be very capable in most aspects of their lives or may need lots of support on a daily basis – hence the need for an individualised support service We need to provide more choice for people with complex support needs or long-term care needs that are effective, robust and financially viable Support to live with their family or own home as long as possible – if the person has dementia and a learning disability and is over 65 then we need good planning

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Question 5 What would your vision be for individuals with a learning disability over the age of 65? Should always be based on individual need More daytime opportunities – not just existing day centres People should be part of ordinary society and communities A needs-led and robust assessment process needs to be put in place Over 65s should remain as part of Adult Services When people over the age of 70 start to slow down it may be possible to live within the same complex as people with a learning disability People should be allowed to do things at their own pace, in smaller groups and not clustered in day centres People should be free and able to access any service they want

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Question 6 How do you think money should be spent with/for people with a learning disability over the age of 65 in the future? What should the priorities be for this demographic? Money should be spent keeping people in their own home for as long as possible, maintaining contact with friends and accessing good day

• pportunities

Accessing generic services may be appropriate for some, given older age generally affects us all the same, slower pace, quieter activities, additional support/staff. Some individuals would be unable to be supported in generic services given complexity of needs. More needs-led support for people who continue to live in the community – encouraging better links with community groups Older people representatives on bodies like the community council Better relationships with community police Supported travel and better transport options More choice of activities by more providers Free personal care in Scotland gives us much greater opportunities Some service users may get too much money and this should be more balanced through DLA Priority in East Ayrshire should be spending money on services, social supports, housing supports, support to appointments, support for shopping and everyday functions Increasing population with dementia & complex needs, staff need to be skilled and services need to be responsive to the needs of aging

• population. In addition younger age group of individuals with LD who

present with same needs as those older individuals in general population, age range needs to be explored, so that it allows adults with LD to access

• lder people’s services at younger age (where it’s felt most appropriate)

SDS options more fully available to this group People should be empowered in the future to plan their own supports

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Workers also took part in focus groups covering the same themes collectively. Focus Group Findings Question 1 In your opinion, what do you think is good about the support individuals over 65 years currently receive? Quite often people have support whilst living in their own home and support to access the community and be out and about in the community. Barriers – People not having as much confidence as they used to Transport Not going out at night as people are too scared The use of SMART technology Individualised Support – support package split in to 2 for social and care. People having the choice to change things – ‘Needs change’ and it’s taking this in to consideration and really ‘individualising services’ Vibrant Communities – some people are accessing groups or involved in some way but there’s not enough especially in the town – small villages appear to be doing better. People can get more tired and tend to fall asleep – if people are in Day Services - is this an appropriate service? Don’t think it should be ‘you’ve now reached a certain age’ here’s what’s going to happen…………… services should be individualised Safe places scheme Day Service Review – Ann Margaret Black is in discussions with Katie Kelly, looking at the bigger picture. More Community Work – working together with different services to provide for people as and within their local community. Don’t know about half the groups which are running – having up to date information.

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Accessing various groups, open to the public i.e. Walking Football Looking at transport options, as this a barrier for some older people Increasing people’s confidence to go out at night, where appropriate. Looking at reducing people’s days whom attend day centres, rather than them falling asleep. Things need to be local, part of the community – ‘not separate’ groups for LD, Mental Health etc. mixed groups for everyone Training workers within communities and using buildings differently – so they are for everyone to access. To be ‘age appropriate’ Doing more work with local community groups Question 2 What about where people live – do you think there is enough suitable places for people and are we able to meet their choices? What about the future? Relationships with our housing Colleagues is very good We are looking at 3 new Lillyhill’s Older people development, made up of 10 flats and 20 other properties i.e. Bungalows Independent Living using SMART technology People are able to live independently and staff are based in 1 of the flats to provide any necessary support.

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Provided capital money will have a route into housing – influence the housing strategic plan It would be good to have more Lillyhills, Thomson Court and Cuthbert places – to stop people feeling lonely and isolated Question 3 What kind of things do you think should be available in the future for people over 65 years? Day opportunities; housing options; care at home packages; housing support; care homes etc. SDS – being in charge of your own budget Working closer with community brokerage Looking at things differently Having lots of different providers providing care to the 1 person, ‘can be messy’ Communication not as good as it should be People sometimes want to stick to what they already have

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Question 4 What would your vision be for individuals over the age of 65 years? Explore the inequalities; should people with an LD over 65 remain within Adults services or should we explore options of transition into Community Care; increasing support – older peoples capped and supported into residential care? Need to speak to families more A worry would be when a parent isn’t there anymore Parents/Families will want to make sure their son/daughter is ok Look at different developments for people – a small modern complex with group’s etc. running, socialising and meeting people all within the same vicinity – people may not need carers as the complex provides a community, safety, and network of people. Ross Court Model – we need to be checking out what people want and is this the right type of model.

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Question 5 How do you think money should be spent with/for people with a learning disability over the age of 65 in the future? (What do you think are the priorities for this demographic?) We are currently reviewing the Strategic plan – we would like focus groups Community Connectors in GP Practices – is positive Link with groups like Railway Heritage Culture and Leisure Trust – Quality Checkers facilitating interviews/focus groups etc. to gather information in this area Change may need to be gradual More training from Quality Checkers Vibrant Communities need to be at the heart of things Workers trained to be community facilitators

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Emerging Themes and Recommendations The emerging themes: What is it like now for individuals over 65 with a learning disability in East Ayrshire? There are a number of good things happening in East Ayrshire for adults coming up to the age of 65 or who are 65 plus already; there is no anxiety from individuals about what the future might bring nor apparent worries about what services might look like as they get older. However, this may be in part due to no real conversations nor planning has taken place that encourage people to think what might happen in the future. Families seem more concerned with one parent talking of “It is like a transition again and I am looking over the edge of a cliff”. Many individuals talked fondly of the support that they received and were clear that their future contentment on older age depends on having good support, consistently delivered by the same people at a time and a place they have some control over. From the perspective of workers and managers, current provision is ok with good support to where people live and where they go during the day but little done in the way of planning for the future and any real sense of joined-up thinking or working. A lack of robust assessment processes were highlighted and a real tension between who continues to support and provide services for this group; should they stay within traditional adult services for learning disabilities or should they be seen firstly as

• lder people and all services spring from there? This was much more than

a philosophical talking point and is fundamental to how services are designed and developed in East Ayrshire.

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RECOMMENDATION 1 East Ayrshire Council should consider: Developing a new transitions planning tool for adults with a learning disability coming into older age that plans for where people live, where they go and how they are supported. RECOMMENDATION 2 Forming a group that includes individuals and their families to help shape future provision and map out good practice by visiting areas across the UK. . What should provision be like in the future for older people with a learning disability in east Ayrshire? Day Opportunities There is clearly very good practice taking place in general day provision for adults with a learning disability and many individuals and their families want to continue to be supported in a way that makes sense to them, is person centred and keeps people safe, secure and connected with everyday community activities. This happens in day services across East Ayrshire and these principles of good care should be followed but participants recognised that this doesn’t need to be in a building or as part of a learning disability service. Some workers and managers felt that there was a fundamental issue to be addressed when some with a learning disability reaches 65 – do they stay within learning disability services or should they be afforded the ‘status’ of retirement and be seen simply as an older person with changing needs? RECOMMENDATION 3 Agree a vision and develop a strategy from it specifically for older people with a learning disability. This should involve individuals and families alongside council staff from all relevant areas e.g. Vibrant Communities, Heritage and Leisure etc. as well as traditional adult services.

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RECOMMENDATION 4 Develop stronger links between day services and older people services, Vibrant Communities, the voluntary sector, advocacy services and local community groups with a senior managers group formed to steer future day opportunities provision. Housing Again, there is good practice happening in East Ayrshire and individuals spoke warmly of the way they are supported, the standard of their accommodation and the opportunities that go with it. In particular, individuals wanted future provision that allows them to access support quickly and near-by as well as one that supports them to stay connected to the likes of bowling and church groups. Individuals liked the idea of a ‘common room’ or area that allows people to do things together such as play bingo. There was a recognition among workers and managers that a core and cluster model offers potential for meeting the needs of some of this group but there is a need to look elsewhere at what is happening in other areas across Scotland. However, better planning alongside housing and influencing the housing strategy would be helpful as well as being brave enough to look at models of housing provision which may attract criticism

• for example, the idea of a care home type of provision that may be seen

as a step back the way. RECOMMENDATION 5 Planning to be put in place which addresses the particular housing needs

• f adults with a learning disability entering old age and actively involves

individuals and their families alongside decision-makers from housing and social services. RECOMMENDATION 6 A series of good practice visits be arranged to look at other service provision as well as an evaluation of what is currently provided and how that may be re-positioned in the future.

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Planning and joined-up thinking and working Throughout the consultation, the need for proper planning for individuals with a learning disability entering older age became clear. Agencies seem not to talk with each other as often as they might whilst there seems no clear focus on recognising the importance of this transition in someone’s life as opposed to younger people for example. There is no one planning and assessment tool that is used by everyone whilst the early days of integrated care still leave health and social work some distance apart in planning and working together. Individuals and families spoke highly of the person centred approach, planning and recording that takes place in services like The Sir Alexander Fleming and that this should be embedded in future provision and follow the individual as they may move into older people’s services. Many workers spent years building relationships and hard-earned trust with individuals and families in day opportunities and participants felt that there needs to be a way found to use this as individuals enter transition into old age. RECOMMENDATION 7 A new planning and assessment tool to be developed for this group that draws on the principles and practice of person centred working. This tool should be developed with the active involvement of health professionals as well as individuals, their families and their advocates. How money is spent in the future on adults with a learning disability entering old age At a time of diminishing resources and political uncertainty about social care provision, participants felt it was vital to find provision that is affordable and can be sustained, Individuals and their families did not ask for heaps of money to be thrown at them in this consultation but rather identified the things that really matter most to them - respect, being included, friendly workers, some money in their pocket, things to do and people to do them with. These things seem more about attitude, approach and creating an empowering culture rather that than about committing huge amounts of money. Across Scotland, there are some pockets of really effective ways of using self-directed support for older people generally but none specifically for

• lder people with a learning disability. Many participants felt SDS needs to

be developed with this group and the SDS team become more involved in what might be possible.

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Many individuals and their families seem a long way from feeling as if they are in control of how money is spent on them and many still do not understand the concept or the practice of self-directed support. RECOMMENDATION 8 East Ayrshire may consider approaching the Scottish Government to attract funding to try something new, innovative and specific to adults with a learning disability approaching old age around planning, day

• pportunities or housing.

The SDS team to actively target this group and get alongside their partners in day opportunities and housing to look at how the different SDS options might be explored.

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CONCLUSION East Ayrshire Council should be congratulated once again on genuinely asking people what they think and to support the active involvement of the Quality Checkers in doing this. Often decisions are made about big things and little regard is given to the people affected most by this – individuals, their families and those on the frontline of transforming services and any change agenda. The issue of how to best provide for older people is one that challenges local authorities across Scotland and is not unique to East Ayrshire. This consultation threw up as many questions as it did answers but it is clear there are some really good people working in this area and there is some really good practice. It is also clear that there are areas that need to get better but by giving individuals and their families a real chance to have a say will help provide better solutions. Once again, individuals have stated clearly and passionately that the things they want as they enter old age are wrapped around respect, decency and having people in their lives who will keep them safe and secure but also continue to help them still be active citizens not only physically living in communities but having a real presence within them. David Douglas Director Heartfelt and The Quality Checkers Team

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Heartfelt

• Innovative. Inspiring. In the know.