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

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 HH Page 1 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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 HH Page 2 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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. HH Page 3 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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. HH Page 4 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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. HH Page 5 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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. HH Page 6 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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 HH Page 7 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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 HH Page 8 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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 HH Page 9 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n

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 HH Page 10 H e a r t f e l t T r a i n i n g w i t h A t t i t u d e P a r t i c i p a t i o n w i t h P a s s i o n