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Equipped for Inclusion: Report of the Strategy Forum: Equipment
and Adaptations
Chapter 3
Extending and sharing knowledge
"... if you go into any office - health, education or social work - you
wouldn't think there was any problem with information because there's thousands
of leaflets ... and yet people still say they don't get enough information.
So to me that's the starting point of the problem. It's not simply that people
aren't getting the information, it's why are they not getting it when they want
it or in the form that they can absorb it ... So it's not enough for services
to simply chuck the leaflets across and say there you are, there's the information
because it doesn't work."
'User-friendly information for families with disabled children: A guide to
good practice', Wendy Mitchell and Patricia Sloper, 2000.
3.1 Improving and inclusive information
It is important to achieve a balance between the construction of information
in a standardised way and recognising the need for different approaches that
acknowledge the different preferences and abilities that people have for assimilating
and understanding information. Factors will include reading age, visual impairment,
use and availability of technology, language, culture, pictures, diagrams, video,
etc.
The same information resources and sources should be available for people who
use services, as for the people providing those services.
Different levels of information are required, ranging from simple and outline
to complex and detailed. Acknowledging that alternative means will be required,
the Strategy Forum considered how accurate and 'up to date' information could
be organised in a way that makes sense for people seeking equipment and adaptations,
using the most modern technology.
They recommend that information should be organised in categories that relate
to daily living activities, such as kitchen, bathroom, bedroom, etc., together
with some broader activities that are not confined to a location, such as communication
and mobility. It should be possible to focus on an area of activity, where a
range of difficulties can then be explored that have a range of potential equipment
and adaptations linked to them.
The background resource for each type of equipment or adaptation, and for each
area of activity needs to be produced, making use of existing evidence and material.
These two perspectives need to cross reference with one another, and also with
information on suppliers [including purchase costs, delivery charges, and ongoing
service and maintenance implications], local protocols for financial assistance,
and sources of advice and demonstration where this is required.
Information on the wider housing arena should also be included so that alternative
accommodation can be considered where it is the preferred option, or where adaptation
is not feasible, and to provide links to other related services and assistance.
As a backdrop to each type of equipment or adaptation, and in addition to the
information produced by the manufacturer, information would be available on
the experiences of people using them, any important technical and safety factors,
and the findings of the most recent product evaluations and audits.
The central database could easily be set up to have selection criteria based
on the type of equipment or adaptation being looked for, suppliers and their
locality. As new models and new products are manufactured suppliers would notify
those compiling the central database of the existence of the new product and
information providers would receive this information with the next update of
the central database.
Such a resource would provide an important tool to support the wider modernisation
and improvement of equipment and adaptation services. It would be of particular
use in educating all staff involved in the delivery of statutory and voluntary
services of the potential of equipment and adaptations, and in the training
and accreditation of those providing either advice or assessment services. Producing
this type of comprehensive information resource would support effective mainstreaming,
and the development of a wide range of selection and assessment pathways.
Achieving this vision for equipment and adaptation information will need investment
that capitalises on the broad partnerships of interest involved, including the
commercial sector. The basis of this concept is already contained in the web
site being developed by the Scottish Borders eCare project - a Scottish Executive
'Modernising Government Fund' sponsored programme to improve the delivery of
community care services by developing a multi-agency strategy for Information
and Communication Technologies.
The Scottish Borders project brings together two separately funded and run
health and social work equipment services. The new service integrates operational
systems and provides remote access to information and advice on services for
staff and users alike. The project concentrates on achieving integration by
the innovative use of information technology, with a web site that has been
developed to be accessible on different levels to employees delivering services
and to the public, and provides a broad foundation upon which to develop the
'virtual' house concept.
People using equipment and adaptations, and those who assist them, should be
central to the production of information, its dissemination, and the
evaluation of its effectiveness. Local information networks should be linked
to and informed by, as well as inform the proposed national comprehensive information
resource. Local information providers should feed in to the national information
resource.
Recommendation 11: the Scottish Executive
should ensure that the work of the Scottish Borders e-Care project is developed,
in partnership with the Implementation Steering Group, to create the comprehensive
information resource described, including mechanisms to maintain and develop
the content.
3.2 Publicise the information
To increase the availability of this information to all will require a range
of publicity and marketing initiatives, using the expertise of industry and
commerce. There are a number of providers who could assist with this such as
Public Service Announcements [PSA], the Health Education Board for Scotland
[HEBS], NHS Direct, HomePoint and UPDATE.
Publicising services is likely to generate an upsurge in enquiries and it will
be essential to anticipate and have arrangements in place to deal with these.
Any such campaign must clearly signpost where further information can be obtained,
using ‘free phone’ numbers to access local sources of information,
or a web site address where a postcode or map search identifies local sources
of information and advice.
Recommendation 12: once the comprehensive
information resource is available, a range of publicity and marketing initiatives
should be put in place to increase access to this information for all. This
should be underpinned by a robust system to deal with resulting enquiries.
3.3 Improve how information is provided
Information, knowledge and expertise should be shared. People need to be able
to make informed choices, whether they are looking for assistance to fund equipment
and adaptations or seeking to tackle a difficulty for themselves.
The right information at the right time should be provided in an open, transparent
and equitable manner. At times of vulnerability people may not wish to have
all the information available at once. Sensitivity to the needs and abilities
of the individual is required, whilst acknowledging their right to self-determination.
Some people turn for advice to those whose job it is to advise on health or
care matters, including pharmacists, GPs, community-nursing staff, those in
charge of care homes, those who work in education, etc. Others turn to the familiar
advice and information providers such as Citizens Advice Bureaux or libraries,
or contact the relevant voluntary organisations, or may ask at the special school
or centre they go to. Some people learn of equipment and adaptations that may
assist them from their family and social networks, or respond to publicity in
magazines and on television.
Existing local information provision varies, and all areas of Scotland are
not necessarily covered. Consideration is required as to the merits of leaving
local information networks to work together organically, as opposed to promoting
some form of co-ordinated network. It is important to do this with regard for
the wider information agenda.
Good information provision requires an accessible and linked network of accredited
local providers informed by a current, comprehensive and independent resource,
working to established standards, with simple and reliable linkages between
them, available and accessible to a wide range of people, and free at the point
of use.
To achieve this, partner organisations in each locality will need to map existing
services of this type, to identify and link the information network, and identify
gaps that require to be filled. This should include Citizens Advice Bureaux,
Age Concern, and Centres for Independent Living, Disabled Living Centres, other
voluntary sector organisations, Healthy Living Centres, etc.
Standards and qualifications for information provision already exist: for example,
the Federation of Information Advice Centres [FIAC] and the Disabled Living
Centres Council [DLCC] have standards for membership, and the Scottish Qualifications
Authority [SQA] manages a Scottish Vocational Qualification [SVQ] in advice
and guidance. However there is no minimum or mandatory requirement in relation
to information about equipment and adaptation provision.
The report 'Enabling Information' highlighted issues relating to information
provision and established the Scottish Accessible Information Forum [SAIF].
SAIF set standards and prepared a specification for a national disability information
service. The Disability Discrimination Act, Human Rights Act, and the NHS and
Community Care Act include a duty to have essential information available in
a variety of formats.
The HomePoint housing information and advice unit of Communities Scotland promotes
a consumer-focused approach in its work to support providers of housing information
and advice services and has published the 'National Standards for Housing Information
and Advice Providers'. They also disseminate good practice and general information
through a range of publications, award grants to support good practice in the
provision of housing information and advice services, and manage the delivery
of electronic training courses on housing issues.
Recommendation 13: the Scottish Executive
should commission an audit of local information networks and how they link together,
to identify any areas in need of support. They should also commission work on
minimum standards for equipment and adaptation information provision, making
use of existing mechanisms wherever possible.
3.4 Advice and demonstration
To exercise consumer choice and make decisions about a product or adaptation,
the opportunity for discussion with an informed person, a demonstration of what
is available, and the opportunity to try out potential options, or any combination
of these, can be of immense help.
Under the umbrella of the Disabled Living Centres Council [DLCC], Disabled
Living Centres [DLC's] provide information, advice and demonstration specific
to equipment and adaptations. By offering the opportunity to compare the quality,
function, price and aesthetics, they provide a unique opportunity to increase
and empower disabled and older people's choices about how they live.
Advice requires an awareness of the features of any product and the potential
that it offers, impartiality, respect for the expertise and autonomy of the
person, together with the ability to communicate this information to the person
seeking assistance.
The DLCC has developed standards for accreditation as an equipment information
and advice service. Features include:
- management accountable to service user board
- purpose built or via Internet or CD-ROM in libraries, supermarkets, GP surgeries
and other public places integrate with other retailers
- pleasant, accessible, user friendly environment
- open when other retail outlets are open
- focus not on ‘disability’
- funded through partnerships e.g. with statutory agencies, voluntary sector,
equipment suppliers and manufacturers
Demonstration requires knowledge of all features and the ability to indicate
those that are potentially positive and those that are potentially negative
in any given situation. The demonstrator can be a representative of the manufacturer
or supplier, but some people prefer someone independent of any potential commercial
pressure.
The DLCC members' handbook provides a reference manual on setting up and running
an advice and demonstration service to DLCC standards. To do this effectively
DLC's need to carry a comprehensive range of products, and rely on loan equipment
from manufacturers and suppliers. Demonstration of adaptations can be more challenging
than equipment but visual aids such as videos and computers can assist. In Denmark
the 'Pressalit' company has constructed a variable size room to assist.
While the number of DLC's in the UK has grown to 50 dealing with more than
250,000 enquiries each year, the number in Scotland has dropped from 8 to 5
[Dundee, Edinburgh, Elgin, Grangemouth and Paisley]. This contrasts with Denmark,
with one tenth of Scotland’s population, where there are 50 of their equivalent
Technical Aid Centres.
The Joint Future Group recommended that "every area should have an
advice and demonstration service" however local factors will influence
how this is delivered. Many people will travel to a good centre, but equally
no one should be disadvantaged because of an inability to travel. The aim should
be to achieve comprehensive advice and demonstration facilities within easy
travelling distance of all areas of Scotland, together with imaginative alternatives.
Larger populations may be able to support a dedicated physical environment where
remote and rural areas will require more creative and mobile solutions. Partnerships
with other appropriate services should be explored and considered, such as Centres
for Independent Living [CIL's]. Local partners should consider working together
to achieve a service that covers Scotland in the most appropriate way.
Promotion of advice and demonstration services will be a key component for
the success of the strategy, and the associated learning should be fed back
in to the information sources at both national and local level.
Recommendation
14: the Scottish Executive should commission the Disabled Living Centres Council
to audit the organisation and delivery of advice and demonstration services
for equipment and adaptations across Scotland, to DLCC standards, and support
local partners in the development of services that can reach the population
of Scotland.
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