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Viamigo: A monitoring tool to support independent travelling of persons with intellectual disabilities

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Abstract and Figures

Persons with intellectual disabilities (PwID) often aspire to being more socially included by engaging in more community activities, but encounter (social) barriers when travelling independently. Therefore, PwID are often accompanied by family members, friends or volunteers while travelling. In order to both support the independent outdoor mobility of PwID themselves and to reduce the caregivers’ burden, the GIS-based application “Viamigo” was developed (www.viamigo.be), by which an individual can be monitored by a personal coach in real-time from a distance. The goal is that PwID are taught a known individual route, which they can accomplish independently afterwards while being monitored by a personal coach – being a caregiver, family member or friend, taking care of this individual while making the trip. Viamigo determines the location of the user and compares this in time and space within a predetermined range, and automatically sends notifications to the coach in case of deviation from the route, an incorrect speed, entering and/or leaving a safe or dangerous zone, among others. Besides this ‘on route’ functionality, Viamigo also allows to create geofences around destinations (to monitor if the user stays within a predefined zone) and to start emergency tracking. The initial results are promising, as PwID successfully used Viamigo for a heterogeneous set of trips: trips performed by several travel modes (bus, cycling and walking trips), for several activity purposes (both daily recurrent trips to the day centre as trips for shopping, social and recreational purposes), and for different distances.
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Neven, Vanrompay, Declercq, Janssens,
Wets, Dekelver, Daems and Bellemans 1
VIAMIGO: A MONITORING TOOL TO SUPPORT INDEPENDENT TRAVELLING
OF PERSONS WITH INTELLECTUAL DISABILITIES
An Neven (Corresponding author)
An.Neven@uhasselt.be / + 32 (0)11 26 91 30
Transportation Research Institute (IMOB), Hasselt University
Wetenschapspark 5 bus 6, B-3590 Diepenbeek, Belgium
Yves Vanrompay
Yves.Vanrompay@uhasselt.be / + 32 (0)11 26 91 67
Transportation Research Institute (IMOB), Hasselt University
Wetenschapspark 5 bus 6, B-3590 Diepenbeek, Belgium
Katrien Declercq
Katrien.Declercq@uhasselt.be / + 32 (0)11 26 91 61
Transportation Research Institute (IMOB), Hasselt University
Wetenschapspark 5 bus 6, B-3590 Diepenbeek, Belgium
Davy Janssens
Davy.Janssens@uhasselt.be / + 32 (0)11 26 91 28
Transportation Research Institute (IMOB), Hasselt University
Wetenschapspark 5 bus 6, B-3590 Diepenbeek, Belgium
Geert Wets
Geert.Wets@uhasselt.be / + 32 (0)11 26 91 58 / + 32 (0)11 26 91 99 (fax)
Transportation Research Institute (IMOB), Hasselt University
Wetenschapspark 5 bus 6, B-3590 Diepenbeek, Belgium
Jan Dekelver
Jan.Dekelver@thomasmore.be / +32 (0)14 56 23 10
K-Point Inclusion & ICT, Thomas More
Kleinhoefstraat 4, B-2440 Geel, Belgium
Jo Daems
Jo.Daems@thomasmore.be / +32 (0)14 56 23 10
K-Point Inclusion & ICT, Thomas More
Kleinhoefstraat 4, B-2440 Geel, Belgium
Tom Bellemans
Tom.Bellemans@uhasselt.be / + 32 (0)11 26 91 27
Transportation Research Institute (IMOB), Hasselt University
Wetenschapspark 5 bus 6, B-3590 Diepenbeek, Belgium
Submission date: 01/08/2016 Revised version: 10/11/2016
Total word count: 6000 words (text) + 6 figures (1500 words) = 7500 words
Neven, Vanrompay, Declercq, Janssens,
Wets, Dekelver, Daems and Bellemans 2
ABSTRACT
1
Persons with intellectual disabilities (PwID) often aspire to being more socially included by engaging
2
in more community activities, but encounter (social) barriers when travelling independently. Therefore,
3
PwID are often accompanied by family members, friends or volunteers while travelling. In order to both
4
support the independent outdoor mobility of PwID themselves and to reduce the caregivers’ burden, the
5
GIS-based application “Viamigo” was developed (www.viamigo.be), by which an individual can be
6
monitored by a personal coach in real-time from a distance. The goal is that PwID are taught a known
7
individual route, which they can accomplish independently afterwards while being monitored by a
8
personal coach being a caregiver, family member or friend, taking care of this individual while making
9
the trip. Viamigo determines the location of the user and compares this in time and space within a
10
predetermined range, and automatically sends notifications to the coach in case of deviation from the
11
route, an incorrect speed, entering and/or leaving a safe or dangerous zone, among others. Besides this
12
‘on route’ functionality, Viamigo also allows to create geofences around destinations (to monitor if the
13
user stays within a predefined zone) and to start emergency tracking. The initial results are promising,
14
as PwID successfully used Viamigo for a heterogeneous set of trips: trips performed by several travel
15
modes (bus, cycling and walking trips), for several activity purposes (both daily recurrent trips to the
16
day centre as trips for shopping, social and recreational purposes), and for different distances.
17
18
Neven, Vanrompay, Declercq, Janssens,
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1 INTRODUCTION
1
Persons with intellectual disabilities (PwID) often aspire to being more socially included (1) by
2
engaging in more community activities. Maintaining outdoor activity is important to extend the period
3
of high quality living and thereby decrease the period when supporting services are necessary; and
4
should therefore be considered as part of both residential care and community living. If PwID (as well
5
as persons with disabilities in general) can be better supported in maintaining out-of-home activities,
6
this is expected to have an overall positive effect not only on their and their caregivers’ wellbeing and
7
quality of life (QoL; e.g. sense of autonomy, preservation of dignity), but also on society in general.
8
Community inclusion is an important goal for most PwID and their families (2), associated with
9
improved individual and family QoL as well as enhanced independence and self-determination (3). Also
10
from an economics point of view, there is a financial cost of the fact that PwID cannot participate in
11
professional, social and/or economic life because their mobility needs are not met.
12
PwID in either form of supported living schemes (e.g. living dispersed in the community)
13
tended to have greater levels of social inclusion, compared to those living in residential homes or
14
campus-style settings (1). Low-support settings are preferable, both in terms of flexibility and QoL for
15
PwID themselves, as in terms of cost for service provider agencies and families (4). In addition to living,
16
working and utilizing community amenities, community inclusion includes movement in and around
17
public settings, using public transportation (5); hereby increasing independence by offering more
18
employment opportunities and accessing both community facilities and recreational activities (6).
19
An important step towards building more inclusive societies consists of alleviating the
20
challenges faced by persons with disabilities (7). Along with over a hundred other countries, Belgium
21
ratified the UN Convention on the Rights of Persons with Disabilities, stating that the society needs to
22
take the necessary measures to guarantee full exercise of rights to persons with disabilities (8), for
23
example by improving accessibility (9) and barrier-free access to public transportation (UN Convention,
24
article 9 Accessibility and Article 20 Personal Mobility). Increasing attention is being paid to the
25
inclusivity of the mobility system, as evidenced by more accessible vehicles (e.g. low floor buses) and
26
stations, the design of public space, adapted individual mobility services, among others. Large
27
investments are made, mainly to improve the physical accessibility of the public transport (PT), as
28
discussion on accessibility is mainly focused on technical, structural and constructional facts (e.g.
29
kneeling of buses) (10).
30
However, many PwID don’t use the (public) transport system independently because of social
31
barriers: anxiety reasons to travel alone, not knowing how to use it, or because of lack of experience.
32
There may be barriers for PwID when traveling independently (10) because of the lack of staff for
33
assistance, or the presence of unsafe areas or streets for walking (11); impeding or prohibiting self-
34
dependent usage of transportation (12). Using public transport (PT) includes complex routes and
35
schedules, possible transfer requirements and unfamiliar destinations (13). Among others, PwID may
36
encounter difficulties with changes in timetables or cancellations, leading to reactions of panic or losing
37
control (10). A study about PwID going missing showed that in 15% of the disappearances there was
38
evidence that the missing person had a fascination with PT, or that they had been familiar with a
39
particular route but a journey had been disrupted (14).
40
Family or support staff may limit (independent) travelling use as well due to fears for individual
41
safety (13). As questions may arise regarding the ability to continue to travel independently, family
42
members, friends or volunteers may (feel the) need to become involved to provide additional
43
companionship (15). It was shown that there is indeed a need of a supportive network for the
44
independent use of (public) transport for PwID (16) (17). It was shown previously that a possibility
45
might be to equip PwID with mobile phones including a GPS tracking function, so that family members
46
or caregivers can inform them about certain incidents, such as a significant delay or lateness of vehicles,
47
or to locate them when necessary (10).
48
In order to both support the (independent) outdoor mobility of PwID themselves and to reduce
49
the caregivers’ burden (due to the companionship of the person during the trip), we developed the GIS-
50
based application “Viamigo”, by which an individual can be monitored in real-time from a distance.
51
The goal is that PwID (i.e., the users) are taught a known individual route, which they can accomplish
52
independently afterwards while being monitored by a personal ‘coach’. This coach can be a caregiver,
53
family member or friend of the PwID, taking care of this individual while making a trip. The application
54
determines the location of the user and compares this in time and space within a predetermined range,
55
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so that deviations from the planned route can be detected. In that case, the application automatically
1
sends a signal to the coach and the exact location of the user can be identified in real-time. By means of
2
Viamigo, PwID have more confidence to travel independently, leading to a higher QoL. Besides, the
3
social network feels more safe because they can detect in real time where the PwID is. Viamigo is an
4
ICT-based solution assisting PwID living independently in the community (according to the concept of
5
Ambient Assisted Living or AAL).
6
The paper is structured as follows: first, the general working of the Viamigo application and its
7
main characteristics are described in detail. Next, initial descriptive results of some pilot users of
8
Viamigo are discussed. The paper concludes with discussing the strengths and challenges of the
9
application, and major conclusions.
10
11
2 WORKING OF VIAMIGO
12
2.1 General working: ‘On route’ functionality
13
The working of Viamigo consists of three main steps. As a first step, the user (i.e., the PwID) learns to
14
make a new route together with his personal coach. In a second step, the specific route is registered in
15
the web interface, together with some characteristics of the route like the sequence, preferences of
16
notifications, the travel mode of route segments, among others. Safe zones and dangerous zones can
17
also be defined by the coach. When the user wants to make the trip independently after a learning period
18
with his coach, he selects in a third step the desired route in the application on his smartphone. The
19
coach receives automatically a signal on his phone when the user starts the trip, the user gets too far
20
from the planned route or stays a long time on the same place, and when the user completes his route
21
dependent on the predefined characteristics. Besides monitoring the route by notifications on the phone,
22
the coach can also follow the route of the user in real-time on the website.
23
24
2.1.1 User learns new route together with his coach
25
As a first step, the user learns to make a new route together with his personal coach. The route may
26
consist of one or several travel modes, and may include use of PT (but not necessarily). The learned
27
route is mostly a recurring trip that is (or will be) frequently executed by the user, e.g. a trip to work or
28
to the day center, a trip to family or friends, a trip to the nearest convenience store, among others. After
29
a learning period of one or several weeks, of which the duration is dependent on the capabilities of the
30
user, the user should be able to make the trip independently (but being monitored by the coach).
31
32
2.1.2 Coach registers the route of the user in the web interface
33
In the Viamigo web interface, a map is shown (source: OpenStreetMap open source, community-built
34
and free to use) on which the different routes of the user can be registered and displayed afterwards.
35
The Viamigo technology allows creating routes in a user-friendly and intuitive way, with automatic
36
routing according to the transport mode. First, the coach creates a route, which consists of different
37
Points of Interests (POI’s, destinations or intermediate via points the user is travelling to (e.g. work,
38
home)), with at least one start point and one end point. After creating the route, further details of the
39
specific route can be added, like the name of the route and the specific travel mode for the entire route
40
or for each separate route segment.
41
Optionally, safe and dangerous zones can be defined. Examples are a mountain biker who is
42
allowed to deviate in the forest from the proposed route as long as he stays in the green (safe) zone, or
43
an industrial zone that is identified as a red (dangerous) zone because of the high amount of truck traffic.
44
Preferences for notifications can be defined. By default, the coach will be alerted when the
45
battery of the user device goes low, when the GPS reading is too old or when the user device does not
46
seem to have connectivity anymore. Also, the coach can get an alert if the user deviates from more than
47
a specified distance from the route (e.g. more than 100 meters), if the user stays on the same place for a
48
certain time duration (e.g. more than 10 minutes), if the user goes into and/or out a safe or dangerous
49
zone, amongst others all individually adjustable by the coach so that it is tailored to the needs and
50
capabilities of the specific user.
51
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1
FIGURE 1 Overview of web interface of Viamigo: creating route (segments).
2
3
2.1.3 User wants to make the route independently, and is real-time monitored by the coach
4
When the user wants to make a trip independently (which he had learned before (step 1), and which was
5
registered by the coach (step 2)), he selects the desired route on his smartphone by the name of the route
6
or by a predefined, personalized picture of the route. When the user has selected a route on his
7
smartphone, and thus wants to start making a trip, the coach receives a signal on his own smartphone
8
that the user wants to depart. The coach can now confirm this trip, or on the other hand, can reject this
9
trip. In the meanwhile, the user gets a message that he has to wait for the response of the coach. If the
10
trip is confirmed, the user gets a message on his smartphone that he can start the trip. If the trip is
11
rejected, the user gets a warning symbol that he is not allowed to start the trip, and has the option to call
12
the coach to ask for further information and/or instructions.
13
Neven, Vanrompay, Declercq, Janssens,
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User selects preferred route on his
smartphone. Coach gets a signal.
Coach confirms or rejects the trip.
User waits for the response.
User gets signal that he can start
the trip. Coach can monitor in real-
time by his smartphone and PC.
1
FIGURE 2 Selecting a route by the user, waiting for the response of the coach, and monitoring by the
2
coach in real-time by the smartphone and website.
3
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Based on the predefined characteristics (step 2), the coach may receive several notifications during the
1
route of the user, including (but not limited to):
2
- Start of the route: after approval by one of the coaches, all coaches (both the responsible and
3
the observing coaches) automatically receive a signal that the user has started the requested trip.
4
- Deviation of the route: if the user deviates from the route, this could indicate that he has
5
forgotten the right route so that the coach can contact him for further instructions. These settings
6
can be set very strict in the beginning (e.g. get a signal when the user deviates from more than
7
100 meters from the route) but can be made more flexible after a while (e.g. get a signal when
8
the user deviates from more than 1km).
9
- Entering and/or leaving safe zones: the coach can be notified when the user has entered a safe
10
zone (e.g. the area around the house, which is very well known by the user) and hereby knows
11
that the user can stay in this zone without experiencing any difficulties. The coach can get a
12
signal when the user has left this safe zone, so he knows that from that part of the route the user
13
may encounter some difficulties.
14
- Entering and/or leaving dangerous zones: the coach can be alerted when the user has entered
15
a dangerous zone (e.g. a busy intersection or a complicated station environment), so he can
16
choose to call the user to ensure that everything goes well.
17
- Incorrect speed: if the user has an incorrect speed, e.g. when travelling by public transport,
18
this could indicate that there is a delay (possibly leading to longer travel times). Another
19
example when something is potentially wrong, is when a high speed is measured on a segment
20
where the user is supposed to be walking.
21
- Standing still for too long: if the user is standing still for too many minutes (e.g. more than 5
22
minutes, individually adjustable by the coach), this could be explained by the fact that the user
23
is confused about the continuation of the trip and needs more instructions by the coach.
24
However, by monitoring the location of the user in real-time (through the smartphone or
25
website), the coach can detect if the user is just doing some short activity during the trip (e.g.
26
buying something in a shop which is located on the route).
27
- Route completed: after completion of the route, all coaches automatically receive a signal that
28
the user has successfully completed his trip (so they don’t have to monitor them anymore).
29
Besides monitoring the route by notifications on the smartphone, it is also possible to follow the
30
route of the user in real-time on the web interface. Hereby, the coach can see on the map where the user
31
is at that moment, and can see all sent notifications as well. When the user deviates from his route, the
32
coach can make a phone call to the user to explain what he needs to do, or can travel to that point to
33
pick up the user depending on the abilities of this specific user.
34
35
2.2 Geofencing and emergency tracking
36
Viamigo also allows to monitor whether the user will stay within a predefined zone. For example, when
37
the user has arrived at his destination after the trip, the coach might want to monitor that the user will
38
stay within (the surroundings of) this destination. It is possible to simply create a geofence around this
39
location by the coach, of which the preferences for notifications can be defined as well.
40
Besides, if the user is not being monitored during a specific trip, but in case the coach does not
41
know where the user is at a specific moment, he can start up the functionality ‘emergency tracking’.
42
Hereby, the coach can detect the location of the user in real-time by his smartphone or via the website.
43
44
2.3 Main characteristics
45
To the best of our knowledge, other GPS-based systems that exist on the market are solely tracking
46
systems of which most of them have at least one crucial user requirement that is not met, like
47
notifications that are not defined or not working properly in specific circumstances, not being user-
48
friendly enough, or lacking robustness (e.g. no notification when the system is not working because of
49
a poor GPS signal) (18). During the User Centered Design development process of Viamigo, the
50
(heterogeneous) needs, preferences and constraints of the target group (PwID) are fully taken into
51
account, ensuring that our resulting solution is tailored to the target population and therefore meets all
52
key user requirements. A short (not limitative) list of important characteristics of Viamigo:
53
- Form factor: smartphone as commodity hardware. Benefits are that the purchase cost is limited
54
(as no additional device is needed); users are less likely to forget to take it with them when
55
Neven, Vanrompay, Declercq, Janssens,
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leaving the house compared to a custom dedicated device; and it is less stigmatizing for the
1
users themselves (as it is less visible for outsiders that it is an assistive instrument used by
2
PwID). In case of problems, the user can always use the phone to simply call his coach.
3
- History of travelled routes and locations: the detailed overview of travelled routes and
4
locations provides useful insights into the (wandering) behaviour of the user, as well as into
5
potential difficult or dangerous locations. This information can be used to efficiently practice
6
the problematic (segments of the) routes together with the coach.
7
- Individually adaptable settings: the coach can personalize the preferences for notifications,
8
dependent on the specific needs and abilities of his user. The settings can easily be changed
9
during the ‘learning process’ of the user: it is possible to set the limits less strict (or more
10
flexible) in process of time, if it appears that the user manages to travel the route without
11
perceiving any problems.
12
- Community of coaches: Viamigo allows to link several users per coach, a functionality tailored
13
to healthcare facilities where employees can monitor multiple users at the same time by their
14
own application. Viamigo also allows to link several coaches per user, who can belong to
15
different settings, both formal (employees of a healthcare organisation) and informal (family
16
members). For example, a user going from his home to the day centre in the morning can be
17
monitored by his mother as coach, while for the trip back home in the evening he can be
18
monitored by a caregiver as coach. Viamigo builds a ‘virtual organization’ on behalf of the user.
19
In case of multiple coaches, the distinction between ‘responsible’ (confirming the trip as the
20
first coach) and ‘observing’ coaches makes it clear who has the responsibility to monitor the
21
user during a specific trip.
22
- Geofencing: safe and dangerous zones can be set by the coach, both before the trip (in the web
23
interface) as ad hoc during the trip (on the smartphone). Preferences for notifications can be
24
defined, in terms of entering/leaving the zone, the time duration of staying in the zone, among
25
others.
26
- Focus on robustness: the communication and the design is focused on robustness. The
27
communication runs through centralized channels (pubnub push messaging service) which have
28
a significantly higher reliability than e.g. Google Cloud Messaging or Apple Push Notifications.
29
If push messaging would fail, the application gracefully degrades to a less strict form of real-
30
time communication (by REST API calls). If the battery level of the users’ smartphone is low,
31
or the smartphone of the user has insufficient internet or GPS connection, the coach will
32
automatically be notified.
33
- Cloud experience for the coach: the coach can use any device (and also multiple devices at
34
the same time) to monitor the user. By responsive design, the application seamlessly works on
35
smartphone, tablet and PC.
36
- Configurability of alerts: Viamigo has a comprehensive set of possible alarms that can be
37
monitored by the coach, including dwell time, deviation from the route, no network and/or GPS
38
connectivity, among others.
39
40
3 INITIAL RESULTS OF PILOT USERS
41
Preliminary results of 5 different PwID, using the Viamigo application between 7 and 15 months, are
42
presented. Participants were recruited from outpatient care organisations (day centres) of PwID, and
43
were given a full explanation of the study, its purpose, and their role. All participants had at least one
44
coach, generally a family member or a caregiver from the day centre, who was able to monitor their
45
trips. All participants were male and were diagnosed with having an intellectual disability. The analyses
46
in this article are the product of a small sample of participants, and are therefore only based on
47
descriptive statistics (without testing for significant differences). Advanced statistical analyses are
48
needed in a follow-up research in a larger sample, to test if the presented trends can be generalized.
49
50
3.1 Performed trips by using Viamigo
51
All travelled trips of the participants are aggregated, so that general trends emerging from the data can
52
be observed. The results of all users showed that for the majority of the trips, Viamigo was used when
53
making trips by public transport (more specifically by bus), by which typically also a walking segment
54
was included as pre and/or post transport, from and/or to the bus stop. There were also several cycling
55
Neven, Vanrompay, Declercq, Janssens,
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trips by which Viamigo was used. The number of trips that a person generates (at a certain time), could
1
be used as an indication of its activity level (19).
2
In figure 3, the peak in the morning hours (between 8:00 AM and 9:00 AM) is clearly visible, indicating
3
the (almost daily recurring) trips of the participations from their home location to the day centre. There
4
is a second lower peak in the afternoon (between 3:00 PM and 05:00 PM), indicating the homewards
5
trip from the day centre. Participants are also making trips during the other hours of the day, e.g. in the
6
late morning hours and in the evening, demonstrating that the Viamigo application is not only used for
7
the recurrent trips from/to the day centre, but also for more flexible trips for other activity purposes. For
8
example, after a while, pilot user 5 also used Viamigo to travel to some friends (social activities), to a
9
restaurant and a cafeteria, to the nearby station, to a seminary centre, to the doctor, to a fitness centre,
10
among others.
11
12
13
FIGURE 3 Number of trips per hour performed by all participants.
14
15
3.2 Time between route requests and responses by the coach
16
In figure 4, the number of seconds between the route request (by the user) and the approval or rejection
17
(by the coach) is shown. The results show that in the majority of the route requests, the coach responses
18
in a very short time period of less than 30 seconds so the user doesn’t have to wait long before he is
19
allowed to start the trip (if confirmed). It is somewhat notable that the time between route request and
20
response by the coach is shorter in the early morning hours (between 7:00 AM and 8:00 AM) than
21
compared to other hours in the day (e.g. in the later morning or during the afternoon). This can possible
22
be explained by the fact that the (early morning) trip to the day center always occurs around the same
23
time, so the coach expects the user to leave at that time and is therefore more prepared to accept the
24
request and monitor the user. During the rest of the day, the coach may be busy doing other things (e.g.
25
working) and the departure time of the users’ trip may be less fixed, leading that it can take somewhat
26
longer before the coach responses. However, because of the fact that multiple coaches can be linked to
27
one user, the user can always start his trip as soon as one of the coaches has given the approval.
28
29
0%
5%
10%
15%
20%
25%
30%
35%
6:00
AM 7:00
AM 8:00
AM 9:00
AM 10:00
AM 11:00
AM 12:00
PM 1:00
PM 2:00
PM 3:00
PM 4:00
PM 5:00
PM 6:00
PM 7:00
PM 8:00
PM 9:00
PM
Start time of performed trips
Neven, Vanrompay, Declercq, Janssens,
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1
FIGURE 4 Number of seconds between route request by user and approval/rejection of trip by coach.
2
3
3.3 Number of notifications during the trips
4
In general, 61% of all notifications of the participants is due to route deviation, while 28% is related to
5
an incorrect speed and 11% to (the entering or leaving of) a dangerous zone. There seems not to be an
6
obvious relationship between the number of notifications and the travel mode(s) used.
7
Figure 5 shows that in the majority of the trips, the participants receive between one and five
8
notifications during each trip. Except user 5, in around 85% of the trips the participants seem to be able
9
to complete the trip with only a few notifications during the trip. However, notifications are not always
10
problematic or undesirable, as for example a dangerous zone may lie on the route and has to be passed,
11
by which the coach might have predefined to get a signal each time the user enters and/or leaves this
12
dangerous zone. This can be one of the reasons why the coach of user 5 gets more than 5 notifications
13
in 40% of his performed trips. Another explanation may be that this user is still learning a new route,
14
by which the coach has chosen to set the limits very strict (e.g. a notification when the user is deviating
15
from more than 50m of the route or is standing still for more than 2 minutes).
16
17
18
FIGURE 5 Number of seconds between route request by user and approval/rejection of trip by coach.
19
20
0%
10%
20%
30%
40%
50%
60%
1 2 3 4 5 6-10 11-15 16-20 >20
Number of notifications during the trip
USER 1 USER 2 USER 3 USER 4 USER 5
Neven, Vanrompay, Declercq, Janssens,
Wets, Dekelver, Daems and Bellemans 11
3.4 Distances of registered routes
1
Despite the fact that the pilot users only started using Viamigo recently, the results show that the trips
2
that they are making independently by using of Viamigo are both short as well as longer trips. Figure 6
3
shows that the majority of the registered trips in the web interface (by the coach) is between 5km and
4
30 to 40km. User 5 seems to use Viamigo also for (6 different) trips that are more than 40km, which
5
can be an explanation why his number of notifications (see 3.3) is higher than the other users.
6
7
8
FIGURE 6 Number of registered trips per user for different distance intervals.
9
10
4 DISCUSSION AND CONCLUSION
11
Persons with intellectual disabilities often aspire to being more socially included by engaging in more
12
community activities, but may encounter (social) barriers when travelling independently because of lack
13
of experience, lack of staff for assistance, unexpected timetable changes or cancellations, among others.
14
A supportive network is necessary for the independent use of (public) transport for PwID, which leads
15
that PwID are often accompanied by family members, friends or volunteers while travelling. In order to
16
both support the (independent) outdoor mobility of PwID themselves and to reduce the caregivers’
17
burden, the GIS-based application “Viamigo” was developed, by which an individual can be monitored
18
by a personal coach in real-time from a distance. The application determines the location of the user and
19
compares this in time and space within a predetermined range, and automatically sends a notification to
20
the coach in case of deviations from the route.
21
The initial results of a small number of pilot users showed promise, as Viamigo was used for a
22
heterogeneous set of trips: trips performed by several travel modes (both bus, cycling and walking trips),
23
trips performed for several activity purposes (both daily recurrent trips to the day centre but also trips
24
for shopping, social and recreational purposes), and for different distances (both short as longer trips).
25
Viamigo is currently being improved based on the needs and preferences of the target population; so
26
follow-up studies in larger samples are needed to assess if the presented trends can be generalized.
27
Viamigo attempts to meet several articles of the UN Convention on the Rights of Persons with
28
Disabilities. The use of Viamigo contributes to a more independent living of PwID in the community,
29
as it facilitates their movement in and around the community because (social) transportation barriers are
30
eliminated (article 9 Accessibility). Viamigo enhances the personal mobility of PwID with the greatest
31
possible independence, as it ensures them to make trips in the manner and at the time of their choice
32
and at affordable cost (article 20 Personal mobility). Furthermore, it encourages their participation in
33
social and recreational activities, as Viamigo makes it possible to travel more autonomously to several
34
destinations without the need for an attendant during the trips (article 30 Participation in cultural life,
35
recreation, leisure and sport). Viamigo can be used by PwID with different severity of disability, but
36
users should have at least the ability to realize that he/she must request the trip, and also understand
37
what it means for a trip to be not approved.
38
0
2
4
6
8
10
12
Distances of registered routes
USER 1 USER 2 USER 3 USER 4 USER 5
Neven, Vanrompay, Declercq, Janssens,
Wets, Dekelver, Daems and Bellemans 12
Besides supporting the independent outdoor mobility of PwID themselves, hereby enhancing
1
their community participation, autonomy and QoL, Viamigo offers advantages on different levels. The
2
social network of PwID feels more confident and safe as they always know where the user is in real
3
time. Moreover, as they don’t have to accompany the user (anymore) during each trip, their burden is
4
significantly reduced and they can now perform their own activities during these regained time periods.
5
Viamigo also offers (financial) advantages for the government: as more PwID would be able to make
6
their trips independently, e.g. by using public transport, less PwID should use costly (adapted) demand
7
responsive transport options, of which a substantial proportion of the costs might be paid by society
8
(20). Finally, based on the use of Viamigo, the locations where many PwID deviate from their route and
9
that thus could be perceived as the most problematic locations, can be identified. Viamigo is therefore
10
also helpful at a more strategic level, as this information is useful for cities or regions in order to make
11
their environments more accessible. For example, if multiple PwID of the same region (e.g. clients of a
12
healthcare organisation) would make use of Viamigo, the mobility employee of that region can use the
13
data about the locations where these persons deviate from their routes to prioritize specific accessibility
14
measures. A number of limitations may be considered. One might argue that the target group of PwID
15
is vulnerable to being abused by others, like violations or theft of the smartphone; or may easily drop
16
the phone so it will be broken. However, the application has been tested on a range of smartphones that
17
goes from entry-level to the more expensive segment; and does not require any specific hardware
18
requirements that are not available on a regular (less-expensive) smartphone. To avoid breaking of the
19
smartphone, nowadays rugged smartphones are widely available and used by construction workers in
20
rough environments. One may also worry about what will happen if PwID deviate from their route or
21
in case of unexpected cancellations or delays of the public transport, which may lead to panic reactions,
22
as they have no one accompanying during the trip. However, in case of problems, the user can easily
23
call one of the coaches for further instructions. As Viamigo allows to link several coaches per user, there
24
will always be at least one coach available who can be contacted and can provide additional support for
25
the user. It may be questioned whether Viamigo causes a violation of the privacy of the user (i.e., the
26
PwID) as the coach is able to monitor their location in real-time. The experiences of the pilot users
27
however showed that they had no ‘Big Brother feelings’ while making their trips, but on the contrary
28
felt more confident, precisely for the reason that they were being monitored and could therefore easily
29
be supported in potential problematic situations. Since data is collected of user’s trips, this data should
30
be treated according to the EU Data Protection Law. Information that is sent between coaches and users
31
(e.g. the current location of the user) will need to be embedded in secure authentication and authorization
32
protocols to guarantee the privacy of the user. In this small sample, the experiences of the users were
33
only anecdotally surveyed. In a follow-up study in a larger sample, it would be interesting to test the
34
user’s experience of Viamigo by using standardized qualitative outcome measures. Further research
35
about the privacy issues of Viamigo is being conducted. Finally, as Viamigo combines several state of
36
the art technologies, it provides a robust solution in which both PwID and coaches can have confidence.
37
Neven, Vanrompay, Declercq, Janssens,
Wets, Dekelver, Daems and Bellemans 13
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ResearchGate has not been able to resolve any citations for this publication.
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Public bus drivers are a relevant part of the social network supporting people with intellectual disability (ID) in the independent use of public transport as their support can increase self-determination and social inclusion. A study was undertaken that focused on (1) bus drivers' experiences with people with ID; (2) their knowledge about ID in general; and (3) their attitudes toward people with ID. Assessment of experiences, knowledge, and attitudes are important for the detection of potential psychological and social barriers for community inclusion. Experiences, knowledge, and attitudes were evaluated with a standardized questionnaire for a representative sample of 139 local bus drivers. The survey was conducted in a town in Germany with rural surroundings as part of the Nordhorn Public Transportation Intervention Study aiming to increase the independent use of public buses for people with ID. The authors found that some 19% of the bus drivers had experiences with people with ID in their private lives. Also, that knowledge about ID was rather moderate, differing widely according to specific items. Some drivers saw people with disabilities as passengers who are difficult and who needed more attention. Authors concluded that bus drivers are an essential part of the social support system of persons with ID and that assessment of bus drivers' attitudes, experiences, and knowledge is necessary to develop specific training programs. Valid information, communication, and social interaction skills training should be integrated in the regular training of bus drivers. Assessment and training of bus drivers could enhance the chances of persons with ID significantly to be mobile citizens in an inclusive society.
People with disabilities often feel isolated from their communities, which in turn affects their emotional well-being and their overall quality of life. Access to transportation is a substantial barrier to community participation and an improved quality of life for individuals with disabilities. Transportation voucher programs represent a cost-effective way to provide access to transportation for people with disabilities, but few studies have empirically examined the effectiveness of such programs. The present study examined the perceived benefits of participating in a transportation voucher program in Michigan, a midwestern state in the United States with limited public transportation. Cross-sectional survey data collected from a convenience sample of 73 participants of the transportation voucher program, funded by the state's Developmental Disabilities Council from 2005 to 2008, were analyzed. Participation outcomes were differentiated by age, sex, employment status, and type of disability using multivariate logistic regression analysis. More than two-thirds (70%) of participants reported that their emotional well-being and community participation had improved, and 54% of participants indicated that participation in the voucher program had resulted in better overall quality of life. The type of disability was an important factor in determining the degree of gain experienced, particularly in terms of community participation and overall quality of life. Findings suggest that resources spent on developing voucher programs have the potential to enrich the lives of persons with disabilities and their families. However, future longitudinal research along with a comparison group may be necessary to validate these preliminary findings on the benefits of vouchers.
Many disability advocates and professionals believe they will recognize community inclusion when they see it, yet “inclusion” is a nuanced subjective construct that may hold a somewhat different meaning for each person. A comparison of the disability movement and accessibility laws and policies reveals community inclusion to be an ideal repeatedly sought by individuals with disabilities and advocates alike. This article recounts national and international efforts toward inclusion and suggests some reasons why these have fallen short. Research has revealed that limited financial resources, inadequate social supports and transportation, and unwelcoming or negative reciprocal attitudes are important community barriers to inclusion. These barriers are significant to all individuals with disabilities but especially to persons with intellectual disabilities (ID). Regarding ID in the context of person–environment interactions, the authors suggest that other significant barriers to community inclusion may be found in the built environment and result from negative attitudes of the professionals responsible for its creation. Because the built environment plays a substantial role in community inclusion for individuals with ID, it is important to ensure the congruency of designers' attitudes with the philosophies that underlie accessible design and inclusion. The authors suggest that the negative attitudes of the creators of the built environment may be amenable to change through education. The authors highlight the need for an integrated and preventive interdisciplinary educational approach, particularly targeting design professionals, as one meaningful step toward creating truly inclusive and disability-friendly communities.
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To assist families and organizations in their planning for extended care that accompanies the diagnosis of dementia, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States adopted a set of practice guidelines covering the period from when suspicions are aroused to when care ends with eventual death. These guidelines are drawn from the research literature as well as clinical experiences and demonstrated best practices. The guidelines delineate what actions should be undertaken and are presented in a manner that reflects the progressive nature of prevalent dementias. To enable the development of the most appropriate and useful services and care management for adults with intellectual disabilities affected by dementia, the NTG adopted the staging model generally accepted for practice among generic dementia services. The staging model follows the flow from a prediagnosis stage when early recognition of symptoms associated with cognitive decline are recognized through to early, mid, and late stages of dementia, and characterizes the expected changes in behavior and function. In keeping with the National Plan to Address Alzheimer's Disease recommendations for earlier and more widespread efforts to detect possible symptoms, the guidelines cite the application of the NTG-Early Detection Screen for Dementia as a first step in documenting early signs of cognitive and functional changes among people with intellectual disabilities. The guidelines also provide information on nonpharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, managing choice and liability, medication, and nutritional issues.