For ease of reference, and at the request of a number of people with a sensory impairment, this document contains a summary of consultation responses as well as the most recent findings of the Social Work Services Annual Report visits.
Community care services for people with a sensory impairment are often an important lifeline that, through a range of supports, offer a quality of life that might not otherwise be possible. This Action Plan builds on what is already in place and sets out short, medium and long-term goals to meet some of the common needs identified by people with sensory impairments themselves.
The Executive is already firmly committed to social inclusion. The impact of Joint Future, single shared assessment, joint management and pooled budgets should provide an increasing focus on the community care agenda for local authorities and health partners to develop services appropriate to need.
'Sensing Progress,' as a national inspection of services for people with a sensory impairment, laid the foundation for local authorities to assume a lead responsibility on a multi-agency basis and the Action Plan revisits many of the issues raised there. There are other cross-cutting reviews and guidance which equally have relevance to this area. They include the impact of direct payments and support for carers; the review of speech and language therapy and occupational therapy; The same as you? review of learning disability services; the Promoting Health Supporting Inclusion Review of Nursing Services; the impact of the Adults with Incapacity Act; 'Allied Health Professional Scotland'; the Changing Children's Services Fund; and the forthcoming implementation of the Mental Health (Care and Treatment) Act.
More specifically, promoting the rights of people with a sensory impairment is demonstrated through a range of ongoing initiatives from preparing for full implementation of the Disability Discrimination Act to taking forward the findings of the Audiology Review and to recognising British Sign Language as a linguistic minority.
And service developments and improvements for people with a sensory impairment are monitored through the Social Work Services Inspectorate annual visit to each local authority ( annex 2 outlines findings of 2003 Annual Visit).
It is now time to review where we are and to move forward together. To begin this process we approached representatives of key national organisations who provide services for those with a sensory impairment and asked them to work with us on reviewing planning and delivering a user-led conference. We are grateful to those users who helped us by leading sessions and to the many others who contributed to the workshops. Their views are summarised in the next chapter. We also reviewed a range of secondary sources of information from known demographics to policy papers produced by national voluntary organisations.
We have also taken into account approximately 100 responses to the consultation on the draft Action Plan. These give broad support to policy intentions and provide greater clarity about realistic timeframes for implementation as well as suggestions about the means to achieve our objectives. Key themes from this exercise are summarised in the next chapter.
What users bring is the first hand experience of what works and what needs to change. The breadth of need is apparent, some of which extends beyond what community care services can provide. While there are these common elements, it should also be recognised that there are specialist needs that each of the organisations may wish to pursue separately. It is the common community care issues that form the basis of this Plan. Some specialist interests are already being dealt with through other routes. There are other specialist concerns that have emerged from the consultation, notably the request for the introduction of a Scottish equivalent to Section 7 Guidance in England that ensures identification and assessment of the needs of deafblind people. The concerns are noted later in the report and will be taken forward separately from it.
Definitions and prevalence
A variety of terms are commonly used to describe the range of sensory impairments.
While hearing impairment is a generic description this covers several different groups. The first of these is the Deaf Community which is generally used to describe those Deaf people who use British Sign Language and who feel they share a culture with other deaf people. There are also a larger number of people who are profoundly deaf, many of whom will have become deaf during the course of their lives and who will acquire a variety of new communication skills. The largest group is those who are hard of hearing, many of whom acquire hearing loss, as they become older.
The Public Health Institute of Scotland Needs Assessment Report on NHS Audiology Services in Scotland emphasises the following:
Although accurate figures are unclear, research does tell us some of the features of those with hearing impairments. It is known that the number of people with more moderate degrees of loss is far greater than those with more severe losses. Most studies of sensory impairments show higher prevalence rates among men than women, and among lower than upper socio-economic groups. At least 50% of congenital deafness is genetic, but more than 90% of deaf people have hearing parents while nine out of ten children born to two deaf parents have normal hearing. Those who are deaf from an early age tend to marry deaf partners.
The prevalence of hearing impairment in Scotland is expected to rise, the actual rate of deterioration being age-related. Eighty percent of hearing impaired people are aged over 60 years and given no change in prevalence rates over the next 20 years; the demographic structure of the UK will increase the number of hearing impaired people by about 20%.
This is a term used to cover the spectrum of those who have some residual vision to those who have no sight at all. Blind in the context of a person being registerable has a specific meaning, being so blind as to be unable to perform any work for which eyesight is essential. It does not necessarily mean that the person concerned will have no vision at all.
The Social Work (Scotland) Act 1968 gives local authorities the power to maintain a register of people who are blind or partially sighted. Registration is not compulsory and while registration provides access to a number of benefits and concessions there remain a large number of people who meet the criteria but are not registered. Royal National Institute of the Blind (RNIB) research in 1991, undertaken at a UK level, indicated that the number of people on registers is some 23 per cent of those eligible. In 2001 they estimated it to be under a third.
The Scottish Executive published a Statistics Release in October 2003 to present national figures on visually impaired persons registered with local authorities in Scotland. Information collected shows that the number of people registered as blind or partially sighted was estimated to be 38,000. This figure was made up of 23,557 registered blind people and an estimated 14,443 registered partially sighted people. An estimated 4,878 of all registered blind persons have additional disabilities, 36% of which are deaf. An estimated 2,815 of all registered partially sighted persons have additional disabilities, 33% of which are deaf. Nearly 80% of registered blind people are over 65, with approximately 70% being over 75.
Deafblindness, or dual sensory loss, refers to people with a combination of sight and hearing losses which can cause difficulties with communication, access to information and mobility.
'Think dual sensory' published in 1997 by the Department of Health suggested that some 2,000 people in Scotland could have some degree of deafblindness. Both hearing and visual impairments are more prevalent in older age groups, and so too is deafblindness. Recent research leads Deafblind Scotland to believe that there are nearer 5000 deafblind people in Scotland.
According to CACDP Communication and Guiding Skills with Deafblind People, deafblind people can be regarded as falling into four main groups:
Congenital deafblindness; those who are deaf and blind from birth or from early childhood who may have severe communication problems that are the result of difficulties with language acquisition and internalisation. While we recognise the impact on people with additional support needs this is not the focus of this report.
Congenital Visual Impairment - Acquired Hearing Impairment; people who are blind from birth or early childhood, and who subsequently experience a significant hearing loss. They may communicate by means of their residual hearing, speech, deafblind manual, or through Braille or Moon.
Congenital/early profound Deafness - Acquired Visual Impairment - those who have a hearing loss from birth or early childhood, and who subsequently experience a significant visual impairment. Examples of the way they may communicate are: Sign Language, Hands On Signing, Visual Frame Signing and/or Lipreading. Usher Syndrome is one common cause.
Acquired Deafblindness - those who acquire a significant visual and hearing impairment in later life. They may communicate by using residual speech and hearing, deafblind manual, block or Moon.
The Scottish Executive currently funds Deafblind Scotland to work with individual local authorities to more accurately identify those who have a dual sensory impairment. While numbers found broadly correspond to the national figure, indications from this work are that people with deafblindness may appear on a voluntary registration scheme list or a blind or partially sighted one depending on which loss brought the individual to the authority's attention. This, in turn, may mean that specific dual sensory loss needs are not identified, assessed or met.
Conference findings - the user perspective
The Scottish Executive held a user-led conference to hear at first hand what their community care service needs are. A number of key themes emerged:
Access to services
Access to services differs across the country. In some parts of Scotland there are sensory impairment teams to meet the needs of people who are blind and partially sighted as well as those who are Deaf, hard of hearing or deafblind. In others, there are specialist teams for each impairment. In some places the local authority provides services directly, while in others this is contracted out to local and national voluntary organisations. This may lead to variations in how referrals are made and how assessments are undertaken as well as in what services are made available.
Different views were expressed about all visual and hearing impairments being amalgamated and categorised as sensory impairment. There was acknowledgement that there are common areas of need that may be most appropriately addressed in this way while there were others that require a unique response. Sensory Impairment Centres are one example of service delivery where there was a mixed response to their effectiveness. In some places these are said to be working well after an initial period of transition whereas in others multi-resource centres were thought to be used mostly by people with one impairment rather than the range.
A common first route to services is through assessment for equipment and adaptations. It was suggested that there is no consistency in Occupational Therapy services because it depends on where you live which equipment and adaptations are provided to enable access to services and information. It is not just a case of making sure local authority Joint Equipment stores work better, but of making sure that access is there. In drawing together aids for daily living, new technology should be considered as part of a range of options.
Deafblind people have very specific needs including:
While generally welcome as a means of achieving greater consistency of access, current proposals for the single shared assessment process will need to ensure that the format used has sections that clearly identify people with sight problems and that assessors are properly trained to pick up and identify people.
There are also said to be major variations across Scotland in what types of service are funded and the number of hours of each that are made available to users. One Council, for example, offers up to 5 hours weekly of guide communicator time for deafblind people to attend leisure centres while other authorities do not offer anything beyond community care services.
More positively, once a social work department has allocated a service to a person, that service is very rarely taken away.
The advantages of registration to assist in future planning for services were generally agreed, whilst recognising that some people feel that there is a stigma attached to being seen as different. It was thought that identification of deafblind people through Section 7 Guidance in England might be one helpful mechanism that could be applied in Scotland that would lead to predicting needs and numbers.
Devising information, accessing it in appropriate formats and giving information to professionals and others are essential elements of an information strategy for people with sensory impairments. Information is crucial to people with sensory impairments, not just of itself but as the passport this offers to the quality of life that sighted people have.
Providers already have a duty to make available information which is accessible, as part of their responsibilities under the Disability Discrimination Act. It was thought that organisations which provide services do not always do what they might in terms of making information available. Sometimes providing a suitable format is an add on instead of standard practice. It was suggested that all standard documents should automatically be made available in other formats.
Those with deteriorating sight, especially if they are older, are apt to consider this to be an inevitable consequence of the ageing process and need to be helped to learn about services through easily accessible information. While information technology opens new avenues to accessing information, this is not always affordable for those with sensory impairments and support may also be needed to highlight the benefits that technology can bring.
Where individuals do not have the necessary equipment at home, this should be made readily available through community centres and libraries.
Blind people receive a variety of correspondence that, unlike most citizens, they are reliant on others to read for them. The continuing development of assistive technology should gradually alleviate the potential embarrassment that sharing private matters with others may bring.
Professionals who support those with a sensory impairment need access to information that will enable them to better understand the needs which exist if they are to respond appropriately. The need is not so great for those who work in specialist settings, but is for those who have little or no contact. Looking at society more widely, manufacturers and businesses need to better understand these needs and to provide specialist facilities within mainstream settings wherever possible to promote inclusion and minimise stigmatisation.
There was a request that the Scottish Executive conduct research into services in other countries to learn from the good practice that is known to exist in, for example, Scandinavia.
A statement of standards for the care of deaf and deafblind people has already been produced by a multi-agency Task Force in Scotland. The group believed this document should be accepted as it stands. Progress in Sight, a UK set of national standards for people who are blind or partially sighted, could be developed to become national standards for Scotland. Participants preferred that there should be separate standards for each impairment, although these could have a common title so that they were recognised as having the same status.
The two sets of best practice standards, when revised, are seen as the basis to devise a coherent training strategy.
Training content needs to be reviewed to maximise its effectiveness. Some said there has to be a change of focus in the training that is provided. Most organisations currently provide Health and Safety training when communication training is a priority. While the Scottish Executive has recognised the importance of awareness training, the introduction of some aspects of the Disability Discrimination Act in 2004 will have a huge impact on voluntary organisations that training is needed on. Similarly, the guidelines on direct payments will also change and people will need to be ready to deal with these. There is also thought to be a tendency to provide more generic training, which has led to worries about the removal of specialist education. British Sign Language (BSL) and Interpreter training are examples of specialist and complex training needs that will require specific attention.
It was felt that interpreters are not given the same respect in this country as they are elsewhere. In Finland and Sweden the governments fund courses where every student is guaranteed 10,000 per year for four years and students also have access to other funding.
It was generally agreed that the Scottish Parliament has been a positive development, as it is more accessible to users than Westminster. However, involvement could be extended further so that all users feel valued and not merely tolerated.
Standards should therefore be driven by user participation. Organisations need to be run by members and users need to be involved in management and policy. Users need to belong to a system before they can effectively influence it.
Consultation should lead to better outcomes and not be tokenistic or repetitive and this relies on all partners working collaboratively. Good practice would suggest that the needs of people with a sensory impairment should be taken into account to make it possible for them to be involved on an equitable basis. This conference was a good start because the users led it and were actively involved at the beginning of the process.
Practical suggestions were made with regard to achieving user involvement. Acronyms should be avoided or explained. Letters and minutes should be issued in the appropriate styles and formats with simple and accessible language. It should also be recognised and taken into account that it can be very difficult to talk to a group of people - building confidence so that users feel more able to contribute is key.
The way forward
The Scottish Executive is providing local authorities with substantial additional resources for community care. This year the Scottish Executive allocated 1.316 billion for community care to local authorities. It is for local authorities to decide on the priorities in their area and to set their budgets accordingly to best meet local needs.
For people with a sensory impairment the range of needs is diverse. People with disabilities are entitled to an assessment of need and any decision taken about care needs should be based on a detailed assessment of the individual's needs and wishes.
The route to services is not always clear to users. This may be because large-scale structures and systems are not readily able to address specific and specialist need. Nevertheless, the findings from the 2003 cycle of the Social Work Services Inspectorate Annual Report visits demonstrate a general commitment to delivering good quality services for people with a sensory impairment.
Mainstream service delivery itself is undergoing major change where the emphasis is on better joint working between local authorities, NHSScotland and the independent sector. The first care group to be focused on was older people and those with a sensory impairment in this age range may already have benefited from the new structures and procedures that have been introduced. The policy is now being developed from all other adult care groups with a view to implementation by April 2004. This should lead to greater familiarity with the changes in practice and to better outcomes in the longer term.
Identification of need
As indicated earlier, the information about the needs and numbers of people with a sensory impairment varies enormously which impacts on subsequent service planning and delivery.
The Scottish Executive, through Sensing Progress and the Report of the Certification and Registration Working Group, highlighted the inaccuracy of the certification and registration process for blind and partially sighted people as either an indicator of prevalence or individual need. Work on reviewing the content, format and usage of the form used for this purpose, the BP 1, is ongoing. Deafblind Scotland has also been active in advocating the introduction of the equivalent of Department of Health Section 7 guidance which identifies those who are deafblind in England to the Scottish context. They do so, in part, because of the initial findings from the Identification Project. This was funded by the Scottish Executive to ascertain the numbers of people who are deafblind, it indicates that as many of Scotland's 5000 deafblind people are within the single impairment lists, many as yet unrecognised as having dual sensory impairment.
A recognised sensory impairment registration system may be one way forward. This is a contentious issue with some users in favour because of the potential benefits that this may bring and others opposed because of the perceived stigma that is thought to be attached to this formalised procedure.
The Scottish Executive should consult on the best methods of collecting information to assist service planning and delivery, for all those with a sensory impairment, including consideration of the registration process.
Better joint working
The Joint Future Unit is a multi disciplinary team which is broadly responsible for developing joint working between local authorities, NHS Scotland and other bodies to provide better community care services. Its business, the Joint Future Agenda, is now well accepted and local partnerships are actively implementing the key elements of joint working and joint community care services.
The Scottish Executive Circular CCD7/2001 sets out the key steps that local partnerships need to put in place to successfully implement joint resourcing and joint management. The circular indicated that, while "no one size fits all", local partners in social work, health and housing should have:
The Act does not define what are reasonable steps for a service provider to have to take in order to change its practices. A service provider must take reasonable steps to provide auxiliary aids or services if this would make it easier for disabled people to make use of any services which it offers to the public.
The Scottish Executive has just published an equipment and adaptations strategy "Equipped for Inclusion" that is designed to improve the provision of these services across social and health care boundaries.
An example of how technological advances have impacted on service delivery is the option for deaf people to have access to digital hearing aids, which was considered by the recent Public Health Institute of Scotland NHS Audiology Services in Scotland . The Partnership Agreement now includes a commitment to ensure the resources are available to allow the routine issue of digital hearing aids and support where they are the most clinically effective option. NHS boards are asked to develop modernisation action plans for hearing aid services, and an additional 1.5 million was made available earlier this year for the purchase of new audiology equipment.
What is appropriate will vary according to provider, service and service user. Auxiliary aids and services are not limited to aids to communication. From October 2004, these could be any kind of aid or service (section 21(4) SI 1999/1/91 reg 4).
Section 21(4) gives two examples of auxiliary aids or services: the provision of information on audio-tape and the provision of a sign language interpreter.
Information is a key element and users regard the Disability Rights Commission as a primary source of information on disability issues and are keen that its profile continues to develop. RNIB are at the forefront of developing formats for publications through their See It Right campaign and the principles on which this good practice guidance are laid seem applicable to other sensory impairments. The Scottish Accessible Information Forum has already developed local authority information standards. Evaluating and merging these strands of activity may develop their value further.
The Scottish Executive should develop an information strategy for people with a sensory impairment by reviewing existing information standards in conjunction with the Scottish Accessible Information Forum and other appropriate organisations to assess what is and should be available.
Giving information is not sufficient. People with a sensory impairment need to be confident that when they make contact with a service there will be someone there who is able to communicate with them. At present they are unable to do so. It will take some years before this position is reached because of the time required to train staff to attain the appropriate skills. In the interim, a baseline is needed on which to build.
It is recommended that every social work or social care facility should have staff who are able to meet the basic communication needs of a person with a sensory impairment by April 2006.
For some people with a sensory impairment some services are specialist in nature. This may be the support of a Social Worker for Deaf People, the independence teaching skills of a rehabilitation and mobility worker for people who have a visual impairment or access to a deafblind communicator.
These services have developed incrementally and are not necessarily linked to each other or to mainstream service delivery. Focussing on deafblindness, reports such as Breaking Through recognise the essential nature of a professional guide/communicator service in the lives of deafblind people. However, although a guide/communicator service was first offered in Scotland some 8 years ago much of the country continues to be without a service, for example from April 2002 to March 2003 Deafblind Scotland provided 24,000 hours of guide/communicator service to just under 80 people. Looking to the future, the appropriate balance of mainstream with specialist services needs to be reviewed, with the added aspiration of equal access across Scotland. Obtaining users' views is essential to these deliberations and a series of consultation events is planned to ascertain user levels of satisfaction with the services they receive.
It is proposed that a short-life working group be set up to consider how best to review, commission and disseminate research findings on meeting the needs of people with a sensory impairment, the underlying purpose being to identify what needs to change in community care services for people with a sensory impairment so that present inconsistencies and specialist needs are addressed.
The sought after level of service for people with a sensory impairment currently appears in a number of individual service standards documents devised principally by voluntary organisations.
Published in October 2001, Scottish Best Practice Standards for Deaf, Deafened, Hard of Hearing and Deafblind people are designed to ensure that Community Social Work Services are founded in good practice. The standards were developed by a multi-agency Task Force.
The Scottish Best Practice Standards have been widely circulated amongst service planners, commissioners and service providers, and have been used to inform discussions, but probably not to determine levels and standards of services. Their adoption as standards for commissioning and contracting is at best patchy.
The content took extensive efforts to assemble and be agreed by the constituent interests and is considered to require minor updating for deaf people but may need further work on standards for those who are deafblind. While the latter are included, the emphasis is on those who become deaf first and this would need to be redressed by similar attention being given to those who become visually impaired first.
In 1996, the Scottish National Federation for the Welfare of the Blind (SNFWB) published Vision for the Future - a framework for minimum standards in Social Work and Rehabilitation Services for people with a visual impairment. This was the result of work undertaken by a committee drawn from the primary specialist providers of direct services to visually impaired adults and children in Scotland. The aim of the document was to provide a basis for direct service, commissioning, contracting and drafting of service agreements with voluntary or private agencies. The authors believed they had outlined a set of realistic and achievable standards, and local Councils were urged to adopt strategies to meet the overall standards by the year 2000.
The report was endorsed by ADSW and distributed to all local Councils in Scotland who used it in a similar way to the Best Practice Standards for those who are Deaf to inform debates about service provision but stopped short of becoming the hoped for recognised framework.
Most recently, in October 2002, Progress in Sight was published. This describes national standards of social care for visually impaired adults, aimed primarily at local authority social services in England to provide authoritative benchmarks with which to evaluate their services. This document provides a suitable reference point for the development of care standards in Scotland. There are also national care standards for those who have sensory impairments and who live in residential settings.
Despite these initiatives a framework of national service standards for community care services for people with a sensory impairment is still needed so that users and carers are clear about the nature of service that should be available and authorities will have appropriate benchmarks with which to evaluate their services.
Whatever standards are adopted, these will need to be costed and devised in conjunction with users and in partnership with ADSW and COSLA. They will also need to be reviewed at regular intervals to keep abreast of the more general developments within social care. There should be a set date for implementation with continuous monitoring through inspection and enforcement. Where possible, implementation should parallel implementation of some aspects of the Disability Discrimination Act scheduled for autumn 2004.
It is proposed that a short life working group be set up to produce common sensory impairment service standards, to be completed for implementation by September 2005.
Training is vital to delivering good services for people with a sensory impairment. There is no clear national strategy for training at present and, although there is general agreement about what elements of this might be, provision varies.
The Executive, in partnership with the Scottish Social Services Council, universities and colleges and employers is setting out to develop a strategy for training and development across the social care workforce. A top-level national workforce planning group will drive the agenda for education and training, organisational development, workforce planning and address issues of the status and profile of work in the sector.
The Social Work Services Inspectorate is doubling investment in education and training over the next 3 years and is keen to work closely with all service providers, including those who work with people with a sensory impairment.
The recent report by the Scottish Association of Sign Language Interpreters (SASLI) "Creating Linguistic Access for Deaf and Deafblind People - a strategy for Scotland" recommends setting up a Scottish Centre for Deaf Studies. The recognition by government of BSL as a language places some of the drive for development within the Equality Unit of the Scottish Executive rather than the Community Care Division, recognising that not all people who are Deaf will require community care support.
The Guide Dogs School of Vision and Rehabilitation Studies in Glasgow has been under threat of closure. Like other charities, the Guide Dogs for the Blind Association have had to review their commitments. However, following discussions with SWSI, it has been agreed to keep the school open till 2005. The Executive will contribute to the costs of running the school to allow discussions to take place on the future of rehabilitation training in Scotland.
The Scottish Council on Deafness reported a major crisis in recruitment, training and retention of specialist social workers with deaf people to the Cross Party Group on Deafness in 2002, indicating that local authority grants did not cover training costs with charitable resources subsidising the deficit. They also report that specialist training is in need of revision, particularly SVQs on BSL, Deaf and Deafblind Awareness, Lipreading and Communication Tactics.
There is a whole range of training available from deafblind awareness certificated courses to a new Deafblind Studies diploma course currently being piloted in Scotland. Deafblind Scotland has trained more than 200 people in Communication and Guiding Skills with deafblind people over the past 5 years, only 25 of whom are currently working within the deafblind field. The main reason being that only a few deafblind people are funded to receive a service in any given area. This effectively curtails the development of a well trained professional guide/communicator service as seen in, for example, Scandinavian Countries.
It is essential to become clear about these needs and developments and their implications for practice in the Scottish context before deciding how best to take training forward through the action plan.
A national training strategy which strikes a balance between generic and specialist needs should be devised that places the needs of users and carers at its heart and is based on existing good practice standards. As a first step, the Scottish Executive should carry out an exercise to map all the information that is currently available, clarify the numbers involved and assess the usefulness of training programme content.
In 1981 the Secretary of State for Scotland recommended that each local authority nominate an access officer and encourage the setting up of access panels to improve disabled people's access to the built environment. The Scottish Executive commissioned the Scottish Council for Voluntary Organisations (SCVO) to undertake a review of access panels in Scotland to assess how much the work of access panels is valued by disabled people, their organisations and other key stakeholders such as architects, building control inspectors and others who use the service. They also had to consider whether this work continues to meet a legitimate need, which should be financially supported by the Executive.
The report "A Review of Access Panels in Scotland" was submitted in March 2002 and provided a platform to take forward the agenda for access panels. The Executive felt that it was important for all key stakeholders, to be involved in delivering the report's recommendations and an Access Panels Steering Group, facilitated by SCVO, was formed to take the recommendations forward. Following consultation, the Steering Group submitted its Report to the Executive who has recently replied welcoming the recommendations in principle. The main recommendation is that a national umbrella body is set up with a co-ordinating function for access panels. Work is ongoing on how best this body can be established.