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CHAPTER 6 CROSS CUTTING GAPS IN SERVICES AND BARRIERS TO ACCESS
Key Findings
Consultation with sensory impaired adults suggests that there is a widespread lack of sensory awareness, in the community and in some service providing organisations.
There is evidence to suggest that the experiences of some sensory impaired adults have become worse with reductions in the provision of dedicated social work contacts to facilitate mobility and rehabilitation.
Many respondents, especially the elderly, felt confused and frustrated by the need to proactively seek help and advice and there was suggestion that information about services should be more routinely available and accessible to target populations.
There appears to be a heavy reliance on family, friends and unpaid carers of sensory impaired adults who provide invaluable support in daily activities.
Responses suggest that the services that are available are not being used to maximum effect due to limited awareness of what is available among those they are designed to help.
Introduction
6.1 Having reviewed the core areas of need from the literature, and established the current levels of Scottish response to demand, this chapter presents the findings from the consultation with service providers and service users. It focuses on the cross cutting issues identified by service users as affecting their access to and engagement with community care and support more generally.
6.2 Chapter seven focuses on specific areas of need for the three different impairment communities and also explores mental health service provision and accessibility.
Consultation Methodology
6.3 A service user consultation was undertaken with over 100 service users and carers using a combination of face-to-face interviews, focus groups, telephone interviews, online focus groups and, in some cases, by way of written contribution. All adults were recruited either directly through service providers with whom they were currently engaged or via newsletters distributed by national membership organisations.
6.4 Consultation with service users explored current service usage, identified gaps (from a users and carers perspective) in service provision relating to unmet need and elicited views on the ways in which the services that they accessed promoted positive mental health or detracted from it.
6.5 Contributions were received from:
- 29 hearing impaired adults, the majority of whom were Deaf BSL users and contributed via interviews with BSL interviewers;
- 30 blind or visually impaired adults, all of whom took part by way of one-to-interview or participation in a focus group session;
- 46 dual sensory impaired adults, 24 of whom took part in the face-to-face consultation by means of focus groups and interviews or online discussions, and 22 written contributions; and
- 4 carers.
6.6 The service user interviews complemented the responses received from the survey of services and interviews with local authority and NHS staff. In addition, 28 individual telephone and face-to-face interviews with some of the core services identified in the mapping exercise were carried out, along with two focus group sessions.
6.7 This chapter combines data from both the service user and service provider consultations. The data represents the views as expressed directly by those consulted.
Identifying Demand
6.8 A core feature of existing information on the needs of sensory impaired adults is a lack of reliable data relating to numbers of sensory impaired adults across Scotland. For each of the three client groups, the quality of data currently available was considered to be poor and patchy at best.
6.9 National statistics for registered blind and partially sighted adults do provide some insight into the occurrence of this impairment in the population. The need for data is perhaps more urgent for the Deaf, deafened and hard of hearing community and for Deafblind and other dual sensory impaired people.
6.10 Mixed views were expressed about the challenges faced in collecting this data including perceptions that:
- registration on statutory databases could only ever be voluntary and, therefore, would always be confounded by underreporting; and
- reservations about who should be responsible for collecting the data and maintaining the database in order to encourage people to register and assure them that of its value.
6.11 Examples of good practice include the Identification Projects run by Deafblind Scotland in response to anticipated change in Scotland resulting from Guidance under Section 7 (2001) of the local authorities act (1970) in England and Wales.
6.12 The Identification Project, which involved direct action by local authorities working with Deafblind Scotland to identify dual sensory impaired adults in their communities, resulted in over 300 people being identified across Scotland from only a handful of authorities that took part. Although the project was discontinued, it provides an example of how future identification of deafblind needs may be undertaken with a joined up working approach. This model may also be adopted for the Deaf, deafened and hard of hearing communities where this also currently a lack of reliable statistics.
Sensory Awareness
6.13 The research suggests low levels of sensory awareness in the general population, which compounds lack of awareness in generic community care and mental health services.
6.14 The lack of awareness demonstrated by members of the public was seen to add to some people's feelings of social exclusion:
"When we're out and about, people will come and chat to my husband. When they're gone, I can ask, "Who was that?", and it will turn out that it's somebody I've known for years and you think, "Well, why weren't they talking to me?""
"I find that someone will shout over "hello" to me from across the street or whatever. How am I supposed to know who they are?"
6.15 One specific area of sensory awareness that caused particular concern among service providers and users is people's tendency to classify dual sensory impaired adults as either visually or hearing impaired, rather than recognising the unique needs experienced by those with dual loss.
"The point really is that deafblindness is often considered as one or the other. People are put into boxes, so to speak, when actually they're smack in the middle. Deafblindness needs to be recognised on its own."
6.16 Indeed, it seems clear from the consultation that there is a need for wider recognition of deafblindness as a uniquely disabling condition and for services to be appropriately tailored:
"Someone who's very specialised in sight loss, a social worker for the blind, for example, is very geared up for what's required. But then there's a kind of bolt on effect for the deaf - you know, a hearing aid will sort him out - but that's not always the case".
"In my situation, because I've got tunnel vision, I could be reading a book. And I have some hearing, so I might have headphones on listening to some music. And they [people] think, "if you're deafblind, how come you can hear and how come you can see?" You know, they have a stereotype that in order to be deafblind you have to have no sight and no hearing, so I have to explain that".
"I feel that deafblindness needs to be better explained. No one fills you in on this information - that you won't be completely deaf and completely blind."
"The whole world is designed for one impairment and not for two."
6.17 In the wider social well-being agenda, it was suggested that awareness campaigns, such as the 'See Me' campaign that was used to promote mental ill-health awareness, might be used for raising public awareness of sensory loss. Examples were given of children's television programmes in the US teaching children basic sign language and government run advertisements that had been used in the past for a TV advertising campaign.
6.18 Similarly, it seems clear from consultations that promotion of sensory awareness and service delivery in some areas is reliant on individual champions, which accounts for much of the variation across the country:
" There are project champions for sensory impairment in some local authorities and in these areas there are huge steps being taken. In others, there is nothing. There are genuine concerns about these champions leaving or moving on and the local authority therefore ceasing to carry on providing support for our members."
6.19 A reliance on individual champions within local authorities was seen to be a high-risk strategy and it was suggested that something more systematic is required. This includes the need for skills share among professionals to avoid loss of valuable expertise as a consequence of staff churn.
6.20 Examples of current practice that were seen to help a little in raising awareness include producing badges to raise awareness of specific conditions (for example, macular disease). Again, however, these are operated for the most part by charitable organisations, are low level and alone are insufficient to achieve the widespread awareness that is required. A national strategy, supported by funding, is perhaps required.
6.21 Linked to poor public (and professional) awareness was a perception that many people perceive sensory impaired adults to be intellectually challenged. Many felt that they were treated as if they were 'stupid' rather than simply sensory impaired.
"I always feel excluded. I am sound of mind - I can hear and speak - I don't need people answering questions for me. There's nothing wrong with my brain".
6.22 This is perhaps also reflected in the current level of support offered to sensory impaired adults. Although all clients who were currently in contact with charitable and voluntary social clubs praised the services, there was some feeling that current levels of social engagement were mundane and less intellectually stimulating than they might be. This view was expressed by all user groups.
6.23 In particular, a need for greater public awareness and destigmatisation of the deaf, blind or deafblind 'label' was seen as necessary. This was also named as one of the key reason that many blind adults may choose not to join the voluntary blind register.
6.24 Consultees were aware that the Disability Discrimination Act means that they had the right to access any service that is available to other members of the public, but many expressed a view that they are made to feel like they "rocking the boat" or "causing bother":
"You are asking an organisation who are maybe struggling to do the bit that they are doing and now you're saying, okay you've got funding for that, but it isn't good enough - you also need to do this. You feel as if you are criticising them, so you usually end up backing off, but that's not right either."
6.25 Fear of labelling and acceptance of impairments also relates to a lack of uptake in services available. As one deaf client reported, " it's the word 'social worker' that puts people off."
Social Work Contact
6.26 The consultation exercise revealed a perceived gap in social work services for almost all clients consulted.
6.27 In recent years, clients suggested that there had been a lack of dedicated support from social work services and, in particular, a lack of continuity of care from a single social worker. One client explained that he had previously received care from a home teacher who attended his home on a regular basis but also explained that this system has changed. Concerns about changing staff meant that personal relationships, and an understanding of clients personal needs, could not be established:
"You don't have the same personal contact with a social worker. If there is a problem, you can ask for a visit, but it could be one of various different people. Under the old system, I would be confident that, with my ongoing personal contact, I would have someone that would pick up any problems that I had, someone to talk to. But now, I just wouldn't know who to talk to".
6.28 Indeed, changes in the model and level of social work provision in recent years attracted considerable attention:
"There so many people now on the register [blind and partially sighted people] that the social workers can't do what they did years ago, when they used to drop in for a cup of tea. A lot of older, established visually impaired people are still thinking, 'Well, we used to get that service, why don't we get it now?'"
"When I first got registered, the service here was absolutely fantastic. There were two social workers and two secretaries and you never had to ask for them to visit. But then they stopped the visits and you have to ask for one now."
"Not so long ago, we used to have someone popping in every six months or so just to find out how things were going and if there was anything we needed. Now there are no social workers doing that. Clients won't ask for anything and, if no-one is making routine visits, then they don't get to know what people need."
"You need the access. You need the people [social work] to come out and discuss things with you in your own home. There's a lot of things you don't want to discuss in a group. If they come out, you can chat to them on a personal level."
6.29 It is important to note that several clients praised their local social work teams at "trying their best" but there was a widespread and shared view that the workload for social work staff is too high: "They can only employ as many people as statutory funding allows".
6.30 Despite this, many clients felt that their needs were at the bottom of priority lists for statutory service providers:
"Basically, sensory impairment and disability comes way down, very far down the list of priorities for statutory services. We are right at the bottom of the list and, because we are there, that's why the attention that we get is non-existent".
Information Sources
6.31 For almost all service users consulted, information about service availability was lacking, both in terms of availability and accessibility.
6.32 The research suggests that most people learn of services, entitlements, social clubs, adaptations, equipment and new legislation affecting them through 'word of mouth' and that few formal channels of information provision exist. There was a feeling that sensory impaired adults are required to be pro-active in finding services but that this often results in patchy knowledge:
"You have to help yourself and try to find out what you can."
"I have to say that I often don't know what's going on because, unless you have regular visits form the social worker, which a lot of us don't, it's just word of mouth."
"I was struggling with sight problems and it's just dreadful. And I got to the stage where I thought, "There must be something", there must be somebody I can talk to, some help. And that's why I took myself here [Society for the Blind] because I was losing confidence in going out. I think if I hadn't taken myself here, I'd have still been wandering about feeling quite lost and lonely really."
6.33 Older adults in particular experience problems with knowing what to expect and what they could ask for:
"With a disability, you're always having to push, push, push. When you're older you don't have the same energy. People you see that are blind and cope really well are the ones that have been blind since birth - they're the most confident. You're a bit frightened to start pushing when you're older".
6.34 At the more generic level, a lack of information in accessible formats was identified for all those experiencing sensory loss. This impacted mostly on blind and deafblind clients, but also BSL users and other deafened adults for whom English was not the first language.
6.35 Many services said that information was available in alternative formats but in many cases it appeared that this translated into potential for information to be made available rather than information already being available ( i.e. in Braille, audio etc). Whilst this demonstrated a commitment to equality of access, the reality is one in which funding prevents provision of alternative format information on a routine basis.
Focussing on Key Periods of Transition
6.36 The consultation suggests that there is much focus on elderly people and on young people aged under 16 but little on the key periods of transition from childhood to adulthood and adults at the point of retirement.
6.37 Discussions with service providers revealed shared concerns about the key period of transition for young people leaving statutory education and entering the realm of adult services. In particular, there was seen to be a gap in the transition from formal education with daily access to support and adulthood where daily contact and statutory support without request disappears.
6.38 At the other end of the spectrum, sensory impaired adults in the older age bands were seen to be 'picked up' by social work services as they often come to the attention of social workers for other, age-related concerns. However, a concentration of services for older adults means that by the time they are identified as having a sensory loss or need, it is too late for training in communication and problems of isolation and depression are fixed and more difficult to address. There is a need to capture sensory loss at an early stage to prevent feelings of helplessness and isolation in coping with sensory loss.
6.39 Adults who are unemployed and do not meet other 'needs' criteria (eg being elderly or being under 16) appear to often be neglected. In particular, the consultation revealed that extra support may be needed for adults on retirement or those having to give up work due to their impairment:
"Work was my life. Just talking to someone has a therapeutic value".
"Having a job, that's very good for your self esteem and things like that, all these things keep your mind off it almost, you don't have time to dwell on it. If you're on your own, it could be extremely debilitating. If you're a weak character, it could destroy you".
6.40 A common theme identified was feelings of guilt and dependence brought on by no longer being able to work - a feeling that they were a burden to others. A focus is needed on sensory impaired adults who are leaving the work environment and who are, therefore, at risk of becoming socially isolated and alone.
Pathway to Services
6.41 The mapping exercise suggests that there is already a great deal of effective cross-sector working in the area of sensory impairment. Many of the national organisations work well alongside statutory service providers to meet the needs of sensory impaired clients and there is much sharing of expertise between voluntary and charitable organisations.
6.42 Despite this, there is evidence to suggest that joint working does not operate consistently across Scotland and there is scope for greater sharing of expertise in some local authority areas.
6.43 One service provider reported that they had excellent working relationships with some local authorities but that, in other areas, they had never received a referral in over 16 years of operation. Interviews with staff show that there is no lack of goodwill and commitment to making such partnerships work and the main challenge is one of funding and strategic monitoring and evaluation of uptake/ engagement with such activities.
6.44 There is also an apparent need for closer working between hospitals, social work services and GPs in referring sensory impaired clients for counselling where required. This again was linked to lack of awareness among some staff of the emotional support needs accompanying identification of sensory loss:
"The hospital were very off-hand. They just said 'there's nothing we can do'. We'll get you registered and we'll send you a white stick in the post. They've got to realise what getting news like that is going to do to someone."
6.45 There appears to be a clear need for an early systematic intervention and referral system for people identified as sensory impaired to make them aware of community care, metal health and general counselling services available. For some people who are registered blind, registered due to multiple disability or are from other high priority groups (young people and the elderly) this currently works well. However, for many of those who become sensory impaired (particularly visually impaired), there is a lack of general service information and no clear referral routes for support:
"There should be somebody who comes to tell you what you're entitled to when you get registered. But you have to find out these things for yourself. When you do find out, there are so many forms to fill in!"
6.46 Local authorities and health providers should provide better signposting of services to other organisations and charities that can help. But it was felt that, often, workers simply do not know what services are available in order to make these referrals:
"Getting into the services that are available is very difficult. There doesn't seem to be a real network, and I think it has to start at the point of treatment, it has to start at the audiology department, or at the sight place. Wherever you go for treatment, that professional should have access to all the services that are available."
"Things need to be advertised. Until the professionals themselves realise what goes on in a lip reading group, they won't be able to promote it".
6.47 In sum, improving pathways to services appears to require better co-ordination of services which can only be achieved through inter-agency awareness raising and communication.
The Role of Carers
6.48 Finally, a gap was highlighted with the lack of known support provided by carers. The research shows that a great deal of community care and other support work is undertaken informally by family members, friends and members of the community rather than by formal service providers:
"Really, my wife sorts out things for me. I don't need any interaction with a social worker, me and my wife just manage."
"I don't need other services as I have good family support, we help each other out."
"My husband was rushed to hospital a couple of years ago and I had to do everything myself. Get two buses to the hospital, do the shopping, try and read what I could. You really come unstuck."
6.49 For Deaf BSL users, there was a view that interpreters from within Deaf families were better equipped to help in some situations requiring signing as they had a better awareness of Deaf culture than those with nor previous experience or involvement in the Deaf community.
6.50 Indeed, many service users suggested that they felt more comfortable receiving the support and counselling that they needed from family members and others in their own community rather than seeking professional help which was less personalised.
6.51 This is presented here since estimating demand for services must take on board the informal care provided by carers and the needs of carers themselves to achieve a more accurate assessment of future service development.
Summary
6.52 Many of the issues raised by consultees reflect those identified in the literature review.
6.53 The cross cutting themes identified suggest that tackling sensory awareness at even its most basic level is needed before wider education regarding the needs of specific clients can be achieved.
6.54 It appears that many sensory impaired adults may feel uncomfortable asking for help and rely on informal channels of communication to learn about the support that is available. Family and friends also supply valuable care which must be taken into account in any analysis of supply and demand for the sensory impaired client group .
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