27 October, 2003
© Beep Knowledge System and case owners, 2002-2003
Confident Information Environment for the Independent Living of People with Severe Disabilities (EU).
This is an ongoing project to support severly disabled people (PSDs) and their carers through telematics and purpose designed interfaces. This is to involve the validation of a number of options thereby presenting practisioners with useful conclusions
Social Inclusion Cases
Executive summary of the case:
Timing of case
January 2001 to July 2003
Type and use of ICT
Project developing a personal technical assistant, a GPRS/UMTS based terminal
for assistants for people with severe disabilities to allow independent
living.
Main beneficiaries
Disabled
Background
CONFIDENT addresses the needs of people with severe disabilities (PSD),
Informal and Professional Assistants groups. It has identified the user
needs of PSD, their informal assistants, their professional assistants
and related service providers. It also provides a methodology for addressing
ethical, privacy and security issues related to PSD.
Persons with Severe Disabilities (PSD) require assistance by other people in their daily activities. The main goal of the project was to develop an information environment to support the independent living of PSDs, able to provide them , their assistants and relevant organisations, with an ubiquitous and adapted access to a number of personal, social and operational assistance services. The information environment consists of innovative GPRS/UMTS-Broadband systems for PSDs (to require assistance, alert in case of emergencies-), for assistants (to organise their tasks, co-ordinate with professionals, receive emergencies, access information...) and for related organisations (to manage their resources). Through these systems all the different stakeholders are integrated in an Independent Living Services Operational Network.
Objectives
Confident has developed an information environment to support the independent
living of persons with severe disabilities, so as to provide them, their
assistants, and relevant organisations, with access to a number of personal,
social, and operational assistance services.
Outputs and results
It is expected that the results of the project, i.e. the CONFIDENT products,
will contribute to improve the quality of life of People with Severe Disabilities,
through improved information accessibility and assistance, in terms of
intelligent coordination of services and resources, communication networks,
organisation of the services, information update and assistance cost.
The alternative supported by CONFIDENT is based in their own home where
they must feel confident even when there is no other person physically
nearby. Service providers (nursing agencies, NGOs, local authorities)
can organise their own services and their workers, in order to set up
a more efficient time and space resource allocation thus reducing social
cost and loss of productive hours.
Lessons and conclusions
The main conclusions from this work are:
- The overall concept of CONFIDENT system was generally well accepted
by the users. Most of them agreed that it would be useful and helpful
for them and it would make them feel more independent.
- The users need a system that is very simple to operate. They need
simple and easy to understand interfaces.
- The initial selection of modalities for CONFIDENT system seems to
be in line with the needs and priorities of the users.
- The ability to select from a number of modalities in order to communicate
with the system was very well accepted by the users. It is obvious that
as others prefer voice communication and other touch screens, the system
should be modular in order to be able to help, by providing the most
suitable communication means combination to each user.
- Only little changes in the original system suggested by users should
be considered and applied to the further development of the system.
- The interface of the system should be simple, providing help to the
user whenever appropriate and guiding the user through the various functionalities.
- The definition of an ethical and a security framework for the conduct of the project and the operation of its results is of great importance.
Background
CONFIDENT is an IST project dealing with personal assistance service provision to People with Special Needs, which started in January 2001 and will continue until June 2003
Persons with Severe Disabilities (PSD) require assistance by other people in their daily activities. The main goal of the project has been to develop an information environment to support the independent living of PSDs, able to provide them, their assistants and relevant organisations, with an ubiquitous and adapted access to a number of personal, social and operational assistance services. The information environment consists of innovative GPRS Broadband systems for PSDs (to require assistance, alert in case of emergencies-), for assistants (to organise their tasks, co-ordinate with professionals, receive emergencies, access information...) and for related organisations (to manage their resources). Through these systems all the different stakeholders are integrated in an Independent Living Services Operational Network.
Persons with severe disabilities (PSDs) may be considered those who require permanent assistance, even not 24 hours a day, by other people in the activities of daily life (ADLs). In U.S.A. some 3.7 million adults, 1.9% of the population, require the assistance of another person in performing ADLs. In the European Union about 7 million people require personal assistance in their ADLs. In order to design systems and services to support their independent living (IL), three main types of needs should be considered:
1. Personal needs - getting up and going to bed, washing, eating, bowel
and bladder care, etc.
2. Domestic needs - shopping, laundry, environmental control, children
care, household tasks, etc.
3. Social needs – communication, working, studying, having fun, relationship,
going to meetings, etc.
The most common form of personal assistance (PA) is the family, but the family may not be available or the person with severe disabilities may prefer living on his/her own. The individuals may turn to specialised agencies to hire home assistance providers commonly known as assistants. If they cannot find or pay for the appropriate funding they may be forced to an institution. Even when users have access to personal assistance services (PAS), in many cases they feel as only secondary actors in deciding their own requirements.
The assistants, and the organisations they belong to, display also some needs in their working activities, such as:
1. Communication needs - ubiquity, information access, etc.
2. Organisational needs –sharing resources, assistance control, etc.
3. CONFIDENT tries to address the needs of PSD, Informal and Professional
Assistants groups.
The definition of Independent Living as adopted at the ENIL-meeting,
Berlin 7th-10th October 1992 is:
Any organization, governmental or non-governmental including organizations
for disabled persons, individuals and professionals who use the term "Independent
Living” in their aims have to comply with the following principles:
1. Solidarity
- To work actively for the development of full equality and participation
for all persons with disabilities regardless of type or extent of disability,
sex, age, residence, ethnic origin, sexuality or religion,
- to work so that people with disabilities can have the resources to
live independently,
- to recognize Independent Living as a basic human right,
- to share or exchange information, advice, support and training in
appropriate form, e.g. tape, Braille, large print, free of charge for
persons with disabilities or, where there is a charge, to ensure that
people with disabilities have the resources to pay for these services,
- to cooperate with and support other organizations which belong to
the international Independent Living network or who support the goals
of the Independent Living movement.
2. Peer Support
- to use peer support as the foremost educational tool for sharing information,
experiences and insights in order to make people with disabilities conscious
of the audio, visual and cultural, psychological, social, economic and
political oppression and discrimination that they are exposed to,
- to make persons with disabilities aware of their possibilities to
reach full equality and participation,
- to empower persons with disabilities by assisting them to acquire
the skills to manage their social and physical environment with the
goal of full equality and participation in their families and society.
3. De-Institutionalisation
To oppose all types of institutions, stationary or mobile, especially
designed for persons with disabilities.
An institution is any public or private establishment, organization or
service which creates special segregated solutions for persons with disabilities
in education, work, housing, transportation, personal assistance and all
other areas of life, which by its nature limits disabled persons' possibilities
to make their own decisions about their lives or reduces their opportunities
to participate in society on equal terms.
In particular, establishments, organizations or services may not use the
term "Independent Living", if they promote or accept personal
assistance services that require the user to live in special dwelling
units or which deny or reduce the individual user's right to full choice
and control over his or her life by forcing the user to live by the routine
of others.
4. Democracy and Self-determination
Organizations may use the term "Independent Living" only, if all the following conditions are satisfied:
- If they are membership organizations based on democratic principles
such as one person - one vote, and
- if full membership with voting rights is reserved for persons with
disabilities only, and
- if the organization as a practice favours disabled persons for positions
within the organization for both paid staff and volunteers including
the head of staff, and
- if the organization as a rule is represented in negotiations, meetings and the media by disabled persons.
Organizations who do not comply with these conditions but want to use the term "Independent Living" in their work have two years to comply with these conditions.
The Independent Living (IL) approach recognizes the rights of citizens with disabilities to take control of their lives by examining choices, making decisions and even taking risks.
The logic behind Independent Living is that people with disabilities are the experts in knowing what their needs are and are able to find solutions to problems surrounding disability issues. The Independent Living philosophy recognizes that people with disabilities have the right to run their own lives, make their own decisions, make their own mistakes and be an active participant in their community.
Background - Key Factor: improved support for the disabled
This project is looking at the needs of people with severe disabilities.
It also looks at the needs of their carers.
Objectives
Confident has developed an information environment to support the independent
living of persons with severe disabilities, so as to provide them, their
assistants, and relevant organisations, with access to a number of personal,
social, and operational assistance services.
The specific objectives of CONFIDENT were:
- Implementation of an open service platform to support the independent living of People with Severe Disabilities, creating an innovative information environment. The main target group consists of person with severe disabilities, their assistants and the related organisations. Ultimately, the target group for the CONFIDENT product is the European citizen.
- Provide people with severe disabilities with a friendly, personalised, single entry point access to information and services taking advantage of the Information Society tools and infrastructure. A Personal Assistance Technical System product has been developed with emphasis on interface effectiveness and communication strategies. This system includes different elements like sensors for biomedical data capture and other microsystems to communicate with other people allowing access to information services, alert professionals in case of emergencies and non-previewed situations. User-friendliness and consistency is believed to be a key issue for market uptake.
- Support new organisational schemes in people with severe disabilities' assistance to enable social and health care organisations and private businesses to take advantage of their new environment, achieving a better use of the available resources, creating added value, configuring new business as well as providing citizens with a more usable high quality service and delineating new working opportunities. A Technical Assistant product has been designed and developed to organise the activities of the assistants, coordinate with other professionals, receive notification of emergencies and access multidisciplinary information and resources based on GPRS and multimedia technologies. Emphasis has been given to enhancing dynamic and flexible way of access. The data made available by the overall environment provide governments and funding agencies with an important source of information to design their social policies. The Independent Living Service Operational network is a smart and scalable network that provides access to a range of integrated services.
- Validation of the CONFIDENT products at three different pilot sites in Greece, Northern Ireland and Spain. Indicators of success will be defined that measure the feasibility and commercial viability of the CONFIDENT approach. These indicators will be suitable to measure five main issues: technological (system performance, reliability and communication networks); user acceptance (user reaction, functionality fulfilment); cost-benefit (operational cost, system cost, stakeholder appreciation of the whole business); product maturity (level of readiness); and risk analysis (potential barriers for exploitation). Assessment is based on questionnaires, but complementary information will be obtained via automatic data collection.
The information environment consists of:
- Personal Assistance Technical Systems (PATS) for the PSDs to require assistance for their ADLs, communicate with other people allowing mutual exchange of experiences, access information services, alert professionals in case of emergencies and non-previewed situations and control the environment. The relatives living close to the PSDs can access these systems to request respite-care services.
- Systems for the assistants, Technical Assistants (TA), to organise their activities, co-ordinate with other professionals, receive the notification of emergencies and access multidisciplinary information and resources.
- Systems for nursing agencies, personal assistance networks, and any other related organisations offering services for the PSDs, to manage their resources, introduce and modify profiles and availability of assistants, consult and require the resources of other agencies (i.e. in emergency situations, physician prescription) and inform accurately the funding agencies or governments about the assistance provided.
Through the involved systems, all the different stakeholders are part of an Independent Living Services Operational Network (ILSO-net). ILSO-net integrates users in an operational private network and makes them elements of the outside world regardless their location. The perspective that every user has on the ILSO-net is the Personal Area Network (PAN). The concept of PAN is one step ahead of LANs, MANs and WANs, so the network scope is centred on the individual’s profile. ILSO-net will take advantage of the new communication and information technologies (cable networks, GPRS, Mobile IP, Bluetooth) to provide users with an ubiquitous and adapted access to services and information. ILSO-net will provide universal access through Web-based development and IP-based communication networks.
The scope of the project can be easily extended to people with temporary disabilities, resulting from traffic accidents or accidents at work, who may require some personal assistance during a period of time. They can become users with the appropriate Personal Assistance Technical System (PATS).
The project has followed the Independent Living philosophy, which emphasises and, more importantly, enables persons with disabilities to have access to resources that ensure that individuals have the right to examine options, make choices, take responsibility to take risks and finally, have the right to make mistakes. In short, Independent Living recognises that persons with disabilities have the same capacity to manage individual decisions as anyone else in the society.
It is evident that the use of the above technologies is a powerful tool in helping PSD to perform comfortably and safely a wide range of their daily life activities. On the other hand it is also evident that the relevant technological capabilities might easily drug the project’s work towards a technologically driven path, away from the real needs and wants of the users. For this reason the CONFIDENT Consortium has created a users forum to base the further concept evolution on sound user needs and adapt the concept - whenever required to user priorities.
Resources
Contract no.: IST-2000-27600
Start Date: 01 January 2001
Duration: 30 months
EC Funding: 1,158,009 EUR
Activities
1/2001 Project start
7/2001 Functional specifications
2/2002 System architecture
1/2003 Final delivery of the Personal Assistant Technical System and the
Technical Assistant products 3/2003 Final delivery of the CONFIDENT information
environment
6/2003 End of the project
Output and Results
The project partners have designed and developed the PATS, the TA, the
systems for the service provider and the Information network. The provided
services up to now are: personal assistance and transportation. The project
is currently in its validation phase and pilots test bed.
It is expected that the results of the project, i.e. the CONFIDENT products, will contribute to improve the quality of life of People with Severe Disabilities, through improved information accessibility and assistance, in terms of intelligent coordination of services and resources, communication networks, organisation of the services, information update and assistance cost. The alternative supported by CONFIDENT is based in their own home where they must feel confident even when there is no other person physically nearby. Service providers (nursing agencies, NGOs, local authorities) can organise their own services and their workers, in order to set up a more efficient time and space resource allocation thus reducing social cost and loss of productive hours.
Outlined below are the services that people with severe physical disability who live within South and East Belfast Trust (one of the project pilot sites) can currently access. It is generally a combination of the services that support clients at home; this is determined by absolute need.
Personal Assistance Devices
RSLSteeper manufacture and supply the \"Fox\" Environmental
Control System. This system consists of a main controller, and peripheral
devices. These peripheral devices consist of door entry systems, relay
boxes, telephones, mains control switches and infrared boxes to operate
home entertainment equipment.
The main control unit gives the user the possibility to operate up to 44 functions. With these, more than one task can be performed from each position, such as muting the TV before answering the telephone, turning on two lights from one position and many more possibilities. The controller can be operated by the built in switch or any external switch can be connected. The controller provides auditory feedback for users who may be visually impaired.
The Fox system is radio-based. This system has a range of support and like 70 meters from any of its control devices, this can vary depending on the construction of the building it is used in.
Disadvantages of this system:
- Labour intensive to install.
- Old technology.
- Requires an engineer to make modifications to system.
- Not totally Wireless.
- Can be difficult for users to get used to.
Advantages of this system:
- Peripheral devices do not have to be in line of sight.
- Used to get feedback whether device has been turned on/off.
Possum Controls currently have the widest range of controllers available to users of Environmental Control Systems. They range from simple scanning devices to a PC based controller with speech feedback to the users. Possum controls are mainly infrared with some radio incorporated into the systems to allow operation of alarms.
Disadvantages of this system:
- Labour intensive to install.
- Requires site visit by engineer to make modifications.
- Not portable.
- Limitations with a infrared.
Advantages of this system:
- Good range off controllers.
- Speech feedback for a visually impaired/learning disabilities.
The GEWA system has a wide range of controllers available to users. These range from simple devices with push-button controls or the GEWA Prog which can be direct access our via any external switch.
Disadvantages of the system:
- Unfriendly user interface.
- Not as flexible as the Fox system.
- Labour intensive to set up.
Advantages of this system
- Infrared is excellent.
- No additional equipment required to operate TV, etc.
- tNot as service intensive as other systems.
- Excellent door entry system.
The SICARE range consists of voice activated systems and simple direct access systems or via switch. The SICARE range are compatible with all GEWA peripheral devices.
Disadvantages of the system:
- Limited functionality for a highly dependent user.
Advantages of this system:
- Inexpensive solution for users who require minimal assistance.
- Short installation time.
- Compatible with GEWA system.
None of the above systems allow any form of patient monitoring. The only
attraction available is users being able to activate their pendant alarms
via the environmental control system. There are a number of Nurse Call
systems, which allow monitoring of patients positions within the confines
of the building.
With any of the above systems once the user leaves the building, they
no longer have control of any of their surroundings, and are unable to
communicate to anyone, in case of an emergency.
Some of these aspects will be integrated into the new systems.
People who provide care for persons with disabilities face a number of problems and difficulties. These can be emotional, practical, medical, social, financial, legal, or ethical. By the term ethical problems we mean all these issues that concern ethical questions about life and death, about revealing the diagnosis, about daily care and guidance, or about the application of protective or liberty-restraining measures.
In order to assure that the ethical, privacy and security issues will be satisfied in all project achievements, a specific plan has been composed that should be followed by all partners.
The project indicates where ethical values are involved in decisions about care for disabled persons, and what issues need to be considered, judged and balanced. In cases of value-judgements, cultural differences and personal choices will always be involved. Cultural and personal elements cannot be dismissed, but they can and should be critically examined. For this purpose, an ethical issues checklist has been developed, based on the more common ethical conventions (international, European and national; from several EU countries), as well as the planned outcomes of CONFIDENT, which will have to be answered by each partner producing a project deliverable or a test plan.
The methodology followed for the examination of safety-security issues involved with CONFIDENT includes a security issues checklist to be checked before any activity, task or Pilot of the project begins, and the calculation of a related Risk number for them.
Lessons and conclusions
Through a survey, the project has identified the main needs and requirements
of PSD, informal assistants, professional assistants and service providers
with relation to CONFIDENT concept and components were examined and defined.
The number of PSD, informal assistants, professional assistants and service providers that were interviewed and completed questionnaires was quite high (79 PSDs, 75 informal assistants, 30 professional assistants and 6 service providers, 190 interviews total from 3 European countries), which makes the results deriving from this survey quite reliable and representative. They are further supported by state of the art and bibliographical data.
The main conclusions from this work are:
- The overall concept of CONFIDENT system was generally
well accepted by the users. Most of them agreed that it would be useful
and helpful for them and it would make them feel more independent.
- The users need a system that is very simple to operate.
They need simple and easy to understand interfaces.
- The initial selection of modalities for CONFIDENT
system seems to be in line with the needs and priorities of the users.
- The ability to select from a number of modalities
in order to communicate with the system was very well accepted by the
users. It is obvious that as others prefer voice communication and other
touch screens, the system should be modular in order to be able to help,
by providing the most suitable communication means combination to each
user.
- Only little changes in the original system suggested
by users should be considered and applied to the further development
of the system.
- The interface of the system should be simple, providing
help to the user whenever appropriate and guiding the user through the
various functionalities.
- The definition of an ethical and a security framework for the conduct of the project and the operation of its results is of great importance.
The results deriving from this survey form the requirements for the realisation of CONFIDENT system and the basis for its components development. Further suggestions by the users will be considered and included in future versions of the system.
PSDs constitute a big part of the European and world population. The need for independent living for them and for the people in their immediate environment is very strong. CONFIDENT opens a window to their lives, providing them with yet another powerful mean to communicate with.
Respecting autonomy is often explained as respecting choices people make. Respecting a person’s own choices and guaranteeing a person’s independence as long as possible, are important principles for the care of disabled people. These are two of the main ethical issues that should be considered and thus never be violated, by any means, through the products and results that will be produced nor the actions and activities that will be realised within CONFIDENT.
For the CONFIDENT products, there are several types of target markets:
- PSDs will benefit from a system easy to use, accessible and adapted to their needs that will provide access to an integrated information environment covering resources for their basic needs in the Independent Living. From a single access point they can require assistance for the different Activities of Daily Living. And within the same environment emergencies will be attended. PSDs may afford hiring some assistance in case that there is no funding by external agents (local authorities, governments...) but they also need a reliable framework allowing them to decide the kind of help they require. Also they need to feel CONFIDENT in case of non-previewed situations. Consequently users may be willing to pay the cost of personal devices and introduce the corresponding interfaces at their homes as they become an active part of the information environment, deciding and controlling their own expenses in personal assistance. If PA users cannot pay for the service, and funding agencies could afford the costs, the CONFIDENT system provides a reliable infrastructure to manage resources and to inform the corresponding authorities. Relatives of PSDs will contact the information for respite-care services and information services. So, potential clients extent not only to the PSDs themselves but also to their relatives who constitute some kind of informal assistants.
- Assistants, personal assistance agencies and insurance companies can make use of CONFIDENT products, in order to offer advanced services and products. They would pay a fee to be introduced in the information environment. They will benefit from a direct contact with potential clients of the personal assistance services. Also in case they cannot attend a scheduled task they will have support from other professionals to cover the activity. They will benefit also from other services like information retrieval on disabilities and the IL. Assistants will be inclined to buy Technical Assistant devices, as the time distribution of their daily tasks will be optimised, and powerful information search engines will be concentrated in their Technical Assistants.
- Independent Living Centres (ILC) will exchange experiences and they can distribute tasks, as now the CONFIDENT environment provides homogeneous access to several ILCs. All the organisations will be provided with tools to manage their resources for a more efficient use and for a more detailed and realistic account to the corresponding funding agencies. The organisations can introduce new services for the independent living that will be reachable for all the PSDs users connected to the information environment.
References and links
Project co-ordinator:
Mr. Rafael Lamas
Fundación Vodafone
Avenida de Europa, 1
Parque Empresarial La Moraleja
28108 Madrid, Spain.
Tel: +34-607-13-3768
Fax: +34-607-13-2933
E-mail: rafael.lamas@vodafone.com
Web site: www.confident-project.org