Independence and wellbeing in sight

1. Independence and wellbeing in sight Mainstreaming visual impairment, focusing on outcomes Carl Freeman Health and Social Care Policy Manager Contact: carl.freeman@guidedogs.org.uk

2. Structure for the session • Answer the question – “Why Guide Dogs? They simply provide assistance dogs for blind people don’t they?” • Look at the prevalence and demography of visual impairment (there is a fairly detailed handout) • Explore how things are for visually impaired people in the UK today – what do they want and do they get it? • Outline plans for change in the arrangement and delivery of specialist rehabilitation services • Take questions and comment at any time. Each slide is numbered and there are 31 slides so only 29 more to go!

3. What we do • By providing blind and partially sighted people with a guide dog, (or long cane training) we enable them to get about more confidently and safely, and yes……… …….we got puppies!

4. What we do in terms of policy work • The work of the Public Policy and Development team is about improving both environment and services for blind and partially sighted people to maximise their opportunities to participate in society • This is a mixture of research and campaigning work as well as policy and service development.

5. Public Policy - Access and Inclusion • Built environment • Transport and mobility -Growing concerns over “shared space”

6. Independence and wellbeing Guide Dogs provides rehabilitation services but is also involved in: • Campaigning • Research • Consultation • User involvement • Scoping problems • Identifying solutions • Building consensus • Piloting new models………….to achieve better outcomes.

7. Some statistics • In the UK approximately 378,000 people are registered blind or partially sighted. • 90 per cent of them are 50 years of age or older • The estimated, range for the size of the older visually impaired population in the UK is: • mild vision impairment: 964, 000 - 1, 155, 000 • moderate or severe visual impairment: 676, 000 - 1, 036, 000 • Amongst the older adult population there is a likely 20% “under-registration” of visual impairment.

8. Some more statistics • The (RNIB) estimated range in the UK for specific eye conditions amongst those aged 75 years and over are: • Age related macular degeneration: 180, 000 - 216, 000 • Glaucoma: 34, 000 - 52, 000 • Diabetic eye disease: 8,000 - 17, 000 • Vascular occlusions: 10, 000 - 21, 000 • Refractive error: 155, 000 - 190, 000 • Cataract: 119, 000 - 147, 000 The last two categories are technically correctable – if people are identified and referred.

9. Those of working age…. • According to RNIB (2006) there are about 47, 000 visually impaired adults in the UK of working age whose visual acuity (VA) corresponds to UK registration criteria • Registration data are believed to be a reasonably accurate means of measuring visual impairment in the working age population.

10. So how well do they fare? • This research tells the story of 1,428 (registered) blind and partially sighted people • Structured questionnaire of 292 questions (many with multiple parts) via telephone • Questions developed from reviewing similar surveys and conducting focus groups • Summary provided but full (154 page report) available from Guide Dogs.

11. Some key findings • Higher mental health scores associated with: • increased ease of ILS activities • increased mobility • increased likelihood of employment • lower reported isolation

12. Some key findings • Significantly higher levels of unemployment amongst visually impaired adults of working age than in the sighted population • A higher percentage of vi adults have “no qualifications” than in the general population…….. • ……but this is also true of those with higher level qualifications.

13. Examples of minimum acceptable levels of functionality (Wellbeing) • We identified a number of key activities and emotional states which most of us take for granted and developed indices to measure “functionality” (in this case, wellbeing) • It should not be “difficult” or “impossible” to: • have friendship • organise assistance • fulfil roles • The following feelings should not occur for “little” or “none” of the time: • energetic feelings • peaceful feelings

14. It should not be “impossible” to: tell the time identify labels on medication make a hot drink prepare a hot meal for self set appliance controls go shopping visit a doctor/dentist deal with one’s mail keep up with the news visit friends and family find clean, matching clothes to wear Examples of minimum acceptable levels of functionality (ILS)

15. Examples of minimum acceptable levels of functionality (Mobility) • One should not: • “never” go out either alone or accompanied • “never” move in an unfamiliar environment • “never” be able to cross a road with no crossing

16. Significant numbers do not achieve minimum levels of outcome Of those for whom the relevant index could be calculated, the following percentages of participants failed to achieve one or more of the criteria for each outcome area: • wellbeing – 37% • ILS – 23% • mobility – 26%

17. How would they like society to change? • A total of 993 answered. Suggestions included: • understanding and awareness (36%) • physical environment (18%) • finances including benefits(11%) • accessible information(9%)

18. What single thing would change their life? • A total of 943 answered. Suggestions included: • restoration of vision(32%) • finances including benefits(11%) • more confidence(7%) • family/friends/relationships(4%)

19. Rehabilitation Project Group • Established 2005 – RPG is a multi agency consortium of voluntary and statutory sector organisations wanting to: “enable radical improvement for blind and partially sighted people through the provision of better rehabilitation services.” • RPG members had longstanding concerns – the principle ones being: • poor co-ordination between eye clinic and social care • inadequacies in assessments of those with sight loss • failure to address emotional impact.

20. Specialist Rehabilitation Workers • Average working life – 8 years • For the majority it is a career of second or third choice • Few career development opportunities • Around 550 UK-wide (less than five years ago) • Their time is spent on average on the following tasks: • administration (35%) • assessment (40%) • service delivery (25%)

21. Independence and well-being in sight - Developing the vision A consultation on the future of rehabilitation services for visually impaired adults in England Prepared by Guide Dogs on behalf of: The Rehabilitation Project Group A case and agenda for change • “Green Paper” – a consultation document which provided: • analysis of demographic and policy context • evidence of case for change • proposals for integrated service models and an outcomes approach • ideas for the workforce • consultation questions

22. Workforce solutions? • Three tier roles: • Senior practitioner type role, taking on complex cases but supervising others in delivering most rehabilitation packages (Working title – “Vision therapist”) • Rehabilitation Worker - delivering rehabilitation training (Working title – “Peripatetic Rehabilitation Worker”) • Rehabilitation Assistant – marking up equipment and delivering less complex packages (and possibly developing this role to work “pan-sensory.” (Working title – “Rehabilitation Assistant”)

23. Only specialists can do it? • Some (particularly older) people with sight loss are already in the system. Do they all need referral to specialists? Given an appropriate level of training and more importantly competency, could low level needs be met by non-specialists? • Still the subject of debate but a pragmatic consensus seems to be developing that so long as generic staff know when to refer on – then yes, some needs could be adequately addressed by them.

24. More emphasis on outcomes • We floated a list of “areas of need” to form the basis of an outcomes-based approach to evaluating service interventions: • managing health • emotional wellbeing • transport • work • leisure and spiritual pursuits • education • information • communication • outdoor mobility • enjoyment and safety in the home

25. More emphasis on outcomes • Broad support for the list but some suggested additions – principally from user consultation events: • financial security • ability to maintain personal relationships and or an outcome focusing on the adjustment of the family • ability to use IT. There was belief that this is not only a means to an end, but an outcome in its own right as society becomes more IT dependent • managing personal appearance and hygiene • personal safety and security (from crime).

26. The “middle step” • It has been consistently clear for 20 years that the emotional impact has not been adequately addressed • One of RPGs key recommendations has been the development of the “middle step” • Based on a model of peer support it will provide: • an opportunity for obtain information • a chance to share hopes and fears with others • confidence and the ability to make positive choices • This should provide better outcomes by maximising the effectiveness of subsequent interventions • We also think it could support “self-assessment”.

27. What next? • More work on developing indices and getting these validated with a view to developing an outcomes based assessment framework • Recruitment, running and evaluation of “middle step” pilots to test out a model that we believe will provide a firm foundation for subsequent rehabilitation by addressing emotional wellbeing • A range of workforce issues: • Professional training • Professional body/registration • Campaigning for more resources etc.

28. Do blind and partially sighted people want different things? • The clear answer that emerges is “no”. People want to: • build lives • realise potential • achieve aspirations • find work • engage in meaningful personal and social relationships • enjoy leisure and recreation • feel part of the community…... ………just like anyone else.

29. ....and that’s about getting confidence and emotional wellbeing right and asking the right questions…. It’s all about the outcomes

30. Further information • Dedicated section on the Guide Dogs website • Details on handout • Links to: • all consultation documents • feedback reports • examples of feedback received • social research pages • the “Functionality and Needs” Survey • updates on progress

31. Finally – an apology….. • On the last page of the handout there is a small typo • “it has a responsibility to draw attention to the problems hat people face” • this is nothing to do with milliners or others in the fashion trade but as I am sure you would have worked out – should read…… • “the problems that people face!”