Community Care Services for adults with a sensory impairment - An Action Plan
SUMMARY
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Introduction
What this Action Plan does is to identify common community care priorities that people with a sensory impairment have. The recommendations focus on how basic common needs can be addressed in a more consistent way so as to benefit the majority. In so doing, it builds on existing good practice and sets out short, medium and long-term goals to improve services in the future. It does not address specialist or single impairment needs.
What people said was needed was not surprising. They asked for access to information and to services where there were clear standards and where staff are well trained. They asked for known good practice to be shared with others. They asked for people who use services to be at the centre of what evolves.
'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.
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. 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.
Definitions
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:
Hearing loss arises from defects in either the middle or the inner ear. The former lead to conducive hearing losses (that are potentially managed by surgery), the latter to sensorineural hearing losses (for which there are no current surgical or medical interventions;
Hearing impairments are common in adults, with almost one in five of the adult population suffering from a measurable deficit in hearing which is likely to lead to difficulties in understanding speech, particularly in noisy backgrounds;
Epidemiology shows that 730,000 adults in Scotland have a hearing loss with a consequent communication deficit.
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%.
Visual Impairment 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 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 5,000 deafblind people in Scotland.
User perspective
The Scottish Executive held a user-led conference to hear at first hand what their community care service needs are.
Key points were:
1) 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.
2) 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.
3) 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.
4) 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.
5) 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.
6) 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.
7) 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.
These thoughts and ideas then formed the basis of an Action Plan, a draft of which went out to public consultation in May 2003 with a closing date in November 2003. The Action Plan was generally welcomed by approximately 100 respondents, split evenly between individuals, local authorities, professional and voluntary bodies with advice being offered on additional statistical information, definitions on sensory impairment and on realistic timeframes for implementation as well as the financial resources that are thought necessary. Commitment was also given to working with the Executive to take the Action Plan through to implementation.
Some comments extended beyond the areas that the Plan seeks to address, notably further development of low vision services. Specific concerns were also expressed about specialist needs, some of which are being addressed through other Scottish Executive initiatives e.g. the continued training of Rehabilitation workers. Some unresolved issues will need to be addressed separately at a later date e.g. the continuing demand for specialist Section 7 guidance equivalent for Scotland. Such a measure would need detailed consideration to ensure that it is necessary, that it could not be achieved through existing mechanisms, and that it would achieve the desired goal of improved identification and better assessment of people who are deafblind. Ongoing monitoring of its introduction in England is at an early stage and it would be essential to be confident of its success in that context before considering an extension.
The majority of respondents support the need to 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. Appropriate methodology will be critical to ensure that not only numbers are captured but also differences in urban and rural populations to think through the subsequent implications for different models of service delivery. COSLA, as the organisation representing 31 of Scotland's local authorities, advocates caution in moving beyond voluntary registration because so that users are not labelled to access services. The extension of certification and registration to those with a hearing impairment was thought possible by some but again negative perceptions of the process would need to be overcome.
Several local authorities are already working on ensuring that the needs of those with a sensory impairment are incorporated into single shared assessment, although staff would need to be fully trained and aware of referral options. Others, predominantly from the voluntary sector, think it critical to combine single shared assessment with regular review of both the system itself and of the individuals who are assessed by it.
There was general support for the establishment of service standards for people with a sensory impairment with those in the voluntary sector advocating that the "Scottish Best Practice Standards" could form the basis of this work. Timescales for completion would need to be extended. Ownership thereafter by all parties would be essential as well as annual auditing of progress.
A review of existing information standards is also welcomed which should emphasise alternative communication mediums, including the availability and usefulness of information technology. COSLA stressed the importance of ensuring that necessary aids, equipment and personnel were in place for standards to be meaningful. Some voluntary sector providers indicated that the desired outcome should be an accessible information strategy aimed at ensuring all employers and public bodies establish arrangements that will enable them to obtain information in accessible formats.
There was also support for further research and the dissemination of good practice. COSLA, in particular, welcomed the opportunity to look at best practice and at the impact and costs of providing services to rural area as well as the differences or cost/benefits of direct provision versus commissioning services from the voluntary sector. Several respondents offered access to research they had already undertaken e.g. Glasgow and the West of Scotland Society for the Blind research on services. Others suggested that this recommendation could be adjusted to include extrapolation of existing research, nationally and internationally as well as considering ways in which existing good practice could be shared across Scotland.
The principle of having staff in every social work or social care facility who are able to meet the basic communication needs of a person with a sensory impairment is supported by the majority of local authorities. Some are already working locally to progress this. Concerns were raised about the ambitious timescale, recruitment and retention of staff, resources and whether care commission has or will be consulted. Voluntary sector providers stressed the necessity of having sufficient numbers of trainers available to meet training demands. They and local authority respondents asked that a next step should define what is meant by "basic communication needs" and "facility". A perception offered was that these terms could lead to only superficial training being carried out as a maximum rather than a minimum. It was also suggested that this proposal is extended to Health staff.
There was almost universal support for the development of a training strategy with many listing this as a top priority. Several respondents were keen that negotiations should take place immediately with social work and social care courses to minimise the time between course development and delivery.
As a result of this exercise, some of the original recommendations have been altered - either to be made clearer or to change the implementation dates to more realistic ones. The recommendations that will be taken forward are:
1. 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.
2. The Scottish Executive should consider how local partnerships can ensure that the ability to capture sensory impairment and needs arising from this in the Single Shared Assessment process for older people is incorporated into SSA for other care groups.
3. 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.
4. It is recommended that every social work or social care facility should have staff that are able to meet the basic communication needs of a person with a sensory impairment by April 2006.
5. 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.
6. 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.
7. 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.
The next step is that there will be three conferences held across Scotland early in 2004 to consider how best to make the recommendations become reality.