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LIFE SPAN AND DISABILITY

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Summary

Persons with Multiple Disabilities Access Stimulation and Contact the Caregiver via
Microswitch and VOCA Technology
Giulio E. Lancioni, Mark F. O’Reilly, Nirbhay N. Singh, Jeff Sigafoos, Doretta Oliva,
Angela Smaldone, Maria L. La Martire, Massimo Antonucci,
Claudia De Pace, & Claudia Chiapparino 119

Creating opportunities for children and youth with Intellectual Developmental


Disabilities: Beyond genetics
Michael F. Giangreco 129

Social Adaptability and Developmental Disability: A Function of Setting


or Training (or Both)?
Thomas E. Scruggs, & Kim Michaud 141

Diagnosis of intellectual disability: comparison between clinical criteria


and automatized procedures
Santo Di Nuovo, & Serafino Buono 151

A project of education for health and autonomy of persons


with intellectual disabilities
Raquel Casado Muñoz, & Fernando Lezcano Barbero 161

The representation of health and disease in multicultural societies:


differences and similarities
Patrizia Velotti, & Giulio Cesare Zavattini 175
Life Span and Disability / XII, 2 (2009), 119-128

Persons with Multiple Disabilities Access Stimulation and


Contact the Caregiver via Microswitch and
VOCA Technology

Giulio E. Lancioni,1 Mark F. O’Reilly,2 Nirbhay N. Singh,3 Jeff Sigafoos,4


Doretta Oliva,5 Angela Smaldone,6 Maria L. La Martire,7
Massimo Antonucci,8 Claudia De Pace 9 & Claudia Chiapparino10

Abstract

We assessed whether eight persons (children and adolescents) with multi-


ple disabilities would succeed in combining the use of a microswitch and a
VOCA. The microswitch served to gain direct access to selected environ-
mental stimuli and the VOCA served to contact the caregiver and obtain
her social attention or mediation toward other forms of stimulation. The
study also included a social validation assessment of the aforementioned
microswitch-VOCA combination. Data showed that participants could
learn to use the microswitch and the VOCA profitably. The social valida-
tion assessment showed that 64 university psychology students and 64 post-
graduate clinical trainees employed as raters favored the combination of
microswitch and VOCA over the microswitch and the VOCA alone.

Received: 9 October 2009, Revised: 25 November 2009, Accepted: 25 November 2009.

1
Dept. of Psychology, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. Tel.: +39
080 5521410, E-mail:g.lancioni@psico.uniba.it
2 Dept. of Special Education, Meadows Center for Preventing Educational Risk, Universi-

ty of Texas at Austin, TX, USA. E-mail: markoreilly@mail.utexas.edu


3
Senior Research Scientist, ONE Research Institute, Midlothian, VA, USA. E-mail: nirbs-
ingh52@aol.com
4 School of Educational Psychology & Pedagogy, Victoria University of Wellington,

Wellington, NZ. E-mail: Jeff.Sigafoos@vuw.ac.nz


5 Research Associates, Lega F. D’Oro Research Center, Osimo, Italy. E-mail:

oliva.d@legadelfilodoro.it
6 Research Associates, Lega F. D’Oro Research Center, Osimo, Italy. E-mail: ansmal-

done@yahoo.it
7 Research Associates, Lega F. D’Oro Research Center, Osimo, Italy. E-mail:

marialuisa.lamartire@virgilio.it
8 Dept. of Psychology, University of Bari, Bari, Italy. E-mail: m.antonucci@psico.uniba.it

9 Dept. of Psychology, University of Bari, Bari, Italy. E-mail: claudia_dpc@libero.it

10
Dept. of Psychology, University of Bari, Bari, Italy. E-mail: claudia.chiapparino@alice.it

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Life Span and Disability Lancioni G. E. et al.

Keywords: Stimulation, Caregiver contact, Multiple disabilities

1. Introduction

Persons with combinations of intellectual, motor, and visual disabilities


are often unable to access environmental stimuli on their own due to very
limited response skills (Holburn, Nguyen, & Vietze, 2004; Lancioni, O’Reil-
ly, Singh, Sigafoos, Oliva, & Severini, 2008a).A realistic strategy to intervene
with these persons and effectively reduce the negative implications of their
condition involves the use of microswitch technology (Mechling, 2006).
Microswitches are technical devices that these persons can learn to use
to control stimulus events through simple/minimal responses (Mechling,
2006; Lancioni, O’Reilly, Singh, Sigafoos, Oliva, & Severini, 2008b). Thus,
microswitch-based programs can provide the persons an opportunity to ac-
cess positive environmental stimulation independently. The same pro-
grams, however, are not suited to satisfy a person’s possible desires for so-
cial contact with the caregiver or for events that only the caregiver’s medi-
ation can ensure, such as edibles and motor play. Such contact or mediation
could represent important objectives to target within a program for persons
with multiple disabilities, as they would (a) allow an extension of the per-
sons’ range of inputs and (b) create a balance between independent and of-
ten mechanical forms of stimulation and more specifically personal or per-
son-mediated events (Schlosser & Sigafoos, 2006).
To tackle this issue, we recently attempted to combine the use of mi-
croswitches for accessing environmental stimuli with the use of a Voice
Output Communication Aid (VOCA) for requesting social contact (Lan-
cioni et al. 2008a; 2008b; Lancioni, O’Reilly, Singh, Sigafoos, Didden, Oliva,
et al. 2009). The present study served as a replication and extension of the
aforementioned, early attempts to combine microswitches and VOCA by
including a group of eight participants with multiple disabilities. These par-
ticipants were recruited on the basis of their (a) reported interest in the ver-
bal/physical attention and the mediation of caregivers (with reactions such
as alertness and smiles occurring in relation to those events), and (b) abili-
ty to perform small responses (not necessarily matching those previously
used in this research area) suitable for activating microswitch-VOCA com-
binations. The study also included a social validation assessment of such
combinations, which was carried out by asking 64 university psychology stu-
dents and 64 post-graduate clinical trainees to serve as social raters (cf.
Cunningham, McDonnell, Easton, & Sturmey, 2003).

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Persons with Multiple Disabilities

2. Method

2.1 Participants
The eight participants were between 5.2 and 17.9 (M = 11) years of age
(see Table 1). They had encephalopathy due to congenital anomalies, pre-
maturity, and perinatal or postnatal hypoxia, and were rated in the severe
or profound intellectual disability range (although no standard tests or IQ
scores were applicable with them). All of them presented with visual im-
pairment (see Table 1), with diagnoses varying from functional/minimal
residual vision (which allowed them to see objects in their proximity) to to-
tal blindness (see Geruschat, 1992; Morse, Teresi, Rosenthal, Holmes, &
Yatzkan, 2004). All participants had serious motor disabilities and were
nonambulatory. They responded with alertness and smiles to a variety of
environmental stimuli (e.g., music and songs) and seemed to be alert to and
enjoy the vocal and physical attention of their caregivers (see above). Two
seemed more specifically interested in their caregivers’ intervention in pro-
viding food items or motor play (Candy and Betsy). All of them lived at
home with their parents and attended day programs. The study was ap-
proved by an ethics committee and received informed consent from the
participants’ parents.

Table 1 - Participants’ Characteristics

Participants Age Visual Condition

Todd 5.8 Minimal residual vision

Boris 10.6 Functional residual vision

Doug 17.9 Total blindness

Daisy 5.2 Minimal residual vision

Candy 12.9 Functional residual vision

Alf 10.4 Functional residual vision

Kate 13.8 Minimal residual vision

Betsy 11.1 Total blindness

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Life Span and Disability Lancioni G. E. et al.

2.2 Responses, microswitches, VOCAs, and electronic control system


The responses used for microswitch and VOCA activation included
hand pushing, eye and mouth opening, head turning or lifting, and
arm/hand lifting or stroking. Some of these responses (i.e., the eye and
mouth opening selected for Betsy and a lateral/facilitated form of hand
stroking selected for Boris) had not been used in previous research in this
area. The microswitch devices included pressure or touch sensors on specif-
ic areas of the wheelchair or the participant’s body, tilt instruments on the
participant’s head or arm, and optic sensors on the participant’s eyeglasses
frame (Lancioni et al. 2008b). The VOCA devices included similar sensors
linked to a vocal output apparatus. This apparatus served to emit messages
requesting caregiver attention/intervention such as “Can you play with
me?” or an equivalent one out of a pool of five messages recorded for each
participant (see Lancioni et al., 2008a).
The microswitch and VOCA devices were connected to a battery-pow-
ered, microprocessor-based electronic control system, which was fitted with
specific software and had four functions. The first function was to turn on,
for 8-10 s, stimuli selected for a target microswitch response when that re-
sponse occurred (i.e., except in baseline). The second function was to trig-
ger the vocal output apparatus of a VOCA device and, thus, the emission of
a message, as a target VOCA response (sensor activation) occurred (i.e., ex-
cept in baseline). The third function was to ignore a microswitch or VOCA
response if this occurred while stimuli for a previous response were still on.
The fourth function was to record the microswitch and VOCA responses
automatically.

2.3 Selection of preferred stimuli to use for microswitch and VOCA responses
Stimulus preference screening (Lancioni et al., 2008b) was used to select
preferred stimuli, that is, stimuli followed by participants’ positive reactions
(e.g., alerting/orienting or smiling) in more than two-thirds of their presen-
tations. The screening covered multiple stimuli; a stimulus was presented 15
to 45 nonconsecutive times. Based on screening, four to eight environmen-
tal stimuli (e.g., songs, vibrating boxes, and lights) were selected for the mi-
croswitch response of each participant. The stimuli were placed near the
participants or fitted to their body and were operated automatically
through the electronic control system (i.e., without any external interven-
tion). The stimuli selected for the VOCA response (through the aforemen-
tioned screening) involved: (a) four to eight joyful sentences presented by
a research assistant serving as caregiver and (b) positive physical gestures
(e.g., caressing, embracing, tickling, and kissing) or, alternatively, food items
or motor play (for Candy and Betsy) provided by the same research assis-
tant. Each stimulus episode lasted 8-10 s.

122
Persons with Multiple Disabilities

2.4 Experimental conditions


Sessions lasted 10 min for Todd, Boris, and Doug, and 5 min for the oth-
er five participants. Session length was determined on the basis of staff and
parents’ advice. Participants received 3 to 11 sessions per day based princi-
pally on their availability. An adapted version of the multiple probe design
across responses was used for each participant to assess the effects of In-
tervention I (Barlow, Nock, & Hersen, 2009). The study started with base-
line on microswitch and VOCA responses (i.e., one response per session).
Then, Intervention I focused on the microswitch response. Once this re-
sponse had increased and steadied, new baseline and Intervention I oc-
curred on the VOCA response. Subsequently, Intervention II focused on
both microswitch and VOCA responses simultaneously. Finally, a social val-
idation assessment occurred. During baseline and Intervention I, physical
prompting was used to ensure responding after 30-60 s with no response.
Baseline. During the initial baseline phase, sessions involved the pres-
ence of the microswitch or the VOCA device, depending on the response
targeted within the specific session. Responses did not produce any effects.
Intervention I. During the initial Intervention I phase, participants had
the microswitch device. Microswitch responses produced the stimuli select-
ed for them.
Baseline. During the second baseline phase, sessions involved the pres-
ence of the VOCA device. Responses did not produce any effects.
Intervention I. During the second Intervention I phase, participants had
the VOCA device. VOCA responses produced one of the messages avail-
able to request contact. This was followed by research assistants’ joyful sen-
tences and (approximately one-half of the times) by their positive physical
gestures also (see above) for Todd, Boris, Doug, Daisy, Alf, and Kate. VO-
CA consequences for the other participants included joyful sentences and
food items (Candy) or joyful sentences and motor play, such as shaking of
the wheelchair (Betsy), regularly.
Intervention II. During Intervention II, participants had both the mi-
croswitch and the VOCA during each session. Microswitch and VOCA re-
sponses produced consequences as during Intervention I.
Social validation assessment. Sixty-four university psychology students
(with a mean age of about 23 years) and 64 post-graduate clinical trainees (with
a mean age of about 32 years) rated the eight participants with multiple dis-
abilities. The rating of a participant was carried out by a subgroup of eight uni-
versity psychology students and a subgroup of eight post-graduate clinical
trainees after they had watched one of the two videotapes of the participant.
One of those videotapes reported three 3-min clips concerning intervention
periods with the microswitch device, with the VOCA, and with the microswitch
and VOCA together. The other videotape reported the same three clips, but
the microswitch-VOCA combination was the first clip of the sequence. The
clips were deemed highly illustrative of the participant’s performance under

123
Life Span and Disability Lancioni G. E. et al.

those intervention conditions. The rating was based on three questions con-
cerning the three conditions’ beneficial impact on contact with the outside
world, their recreational-communicative potential, and their overall cost-bene-
fit value. For each question, three scores were required (i.e., one per condition).
The scores could vary from 1 (least positive) to 5 (most positive).

3. Results

Figures 1 and 2 summarize the data for the three participants with 10-min
sessions (i.e.,Todd, Boris, and Doug) and the five participants with 5-min ses-
sions (i.e., Daisy, Candy, Alf, Kate and Betsy), respectively. The data of each
participant are shown within a single figure panel, identified by his or her
name, and are grouped into blocks of sessions. Four blocks (two per re-
sponse) are used during the first baseline and two blocks are used for each of
the subsequent phases. The number of sessions included in the blocks is indi-
cated by the numerals above them. During the first baseline for the three par-
ticipants included in Figure 1, the mean frequencies of microswitch and VO-
CA responses ranged between 4 and 12 per session. During the first Inter-
vention I phase, the mean frequencies of microswitch responses were be-
tween 25 and 33 per session During the second baseline, the mean frequen-
cies of VOCA responses were between 6 and 10 per session. During the sec-
ond Intervention I phase, the mean frequencies of VOCA responses were be-
tween 21 and 27 per session.The Kolmogorov-Smirnov test (Siegel & Castel-
lan, 1988) showed that the increase from baseline to Intervention I was sta-
tistically significant (p < .01) for each of the two responses for all three stu-
dents. During Intervention II, the participants’ mean cumulative (mi-
croswitch plus VOCA) response frequencies were between 32 and 40 per ses-
sion. The VOCA responses represented between 27% and 43% of the total.
The data for the five participants included in Figure 2 also showed sta-
tistically significant increases from baseline to Intervention I for each of the
two responses. Candy’s Intervention II was interrupted after a relatively
small number of sessions, due to her health problems and hospitalization.
ANOVAs carried out with the scores of each of the two groups of raters
separately showed that the differences among conditions were statistically
significant on each of the three questions, with F(2, 189) ranging from 14.31
to 142.25 (p < .01) (Hays, 1988). Post-hoc paired t-tests showed that the
scores for the microswitch-VOCA combination (which averaged between
4.1 and 4.5 across the three questions for the two groups of raters) differed
significantly from (were more positive than) those available for the mi-
croswitch and the VOCA alone conditions on each of the three questions
for both groups. The t(63) values ranged from 4.98 to 19.84 (p < .01)
(Bourke, Daly, & McGilvray, 1985).

124
Persons with Multiple Disabilities

Figure 1 - The three panels show the data for Todd, Boris, and Doug, respectively.
Within each panel, the striped and gray bars represent the mean frequen-
cies of microswitch and VOCA responses, respectively, per blocks of ses-
sions. The number of sessions included in the blocks (bars) is indicated by
the numerals above them.The striped and gray sections of the stacked bars
appearing in Intervention II represent the relative mean frequencies for the
two responses within the blocks

Microswitch Responses
VOCA Respons es

45

30
TODD
15

45

30
BORIS
15

45

30
DOUG
15

0
1 2 3 4 5 6 7 8 9 10 11 12

Blocks of Sessions

125
Life Span and Disability Lancioni G. E. et al.

Figure 1 - The five panels show the data for Daisy, Candy, Alf, Kate, and Betsy, re-
spectively. The data are plotted as in Figure 1

Microswitch Responses
VOCA Responses

INTERV. I INTERV. I INTERV. II


BASELINE BASELINE
20 30 25
26
15 30 12 12

10 3 4 4 4 3
Mean Frequencies of Microswitch and VOCA Responses

4 DAISY
5
0

20 24
10
15 23 9
14 14
10 3 4 4
4 2 3 CANDY
5
0

15 59
20 19 60
19
14
15
10
4 3 2
2 4 2 ALF
5
0

73 74
20
21 21
21 21
15
10
4 2 4 4 KATE
5 2 5

53 53
20 45 31
15 44 30
10 4
3 2 4 2 4 BETSY
5
0
1 2 3 4 5 6 7 8 9 10 11 12

Blocks of
Blocks ofSessions
Sessions

126
Persons with Multiple Disabilities

4. Discussion

In line with previous data (Lancioni et al., 2008a; 2008b; 2009), these par-
ticipants generally showed consistent microswitch responses as well as VO-
CA responses. The fact that the participants’ VOCA responses were aimed
at different objectives (i.e., social contact or caregiver mediation for other
forms of stimulation) reflected differences in personal interests. Even so,
VOCA responses were for all participants a means to enrich their input in
a relevant way through a functional interaction with their caregivers.
The reasons why the frequency of VOCA responses tended to be lower
than the frequency of microswitch responses were not investigated. One
might hypothesize that (a) the social attention/contact or the caregiver-me-
diated stimulation had a lower reinforcing power than the stimuli available
for microswitch responses at least for some participants, and (b) those par-
ticipants’ response choice reflected such a difference of stimulus impact
(Kazdin, 2001).
In spite of the fact that careful balance between microswitch-related
stimuli and VOCA consequences needs to be found for some students, the
combination of microswitch and VOCA can still be considered a valuable
strategy with clearly positive implications. This view seemed to be widely
supported by the social validation data, which provided a strong endorse-
ment for such a strategy from both groups of raters.
In conclusion, the results of this study (a) provide new evidence of the
applicability of microswitch-VOCA combinations with persons with multi-
ple disabilities, (b) indicate that the consequences of the VOCA can include
caregiver-mediated stimulation opportunities (as an option for participants
with modest reactions to social attention only), and (c) show a clear en-
dorsement of the microswitch-VOCA combination by university psycholo-
gy students and post-graduate clinical trainees. Building on the outcome of
this study and the previous ones on this topic, new research could extend
the evaluation of microswitch-VOCA combinations with the use of new de-
vices (i.e., suitable also for persons with very serious response restrictions)
as well as with larger combinations of devices (e.g., two or three mi-
croswitches and one VOCA).

References
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Bourke, G. J., Daly, L. E., & McGilvray, J. (1985). Interpretation and uses of medical
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Cunningham, J., McDonnell, A., Easton, A., & Sturmey, P. (2003). Social validation

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data on three methods of physical restraint: Views of consumers, staff and students.
Research in Developmental Disabilities, 24, 307-316.

Geruschat, D. R. (1992). Using the acuity card procedure to assess visual acuity in
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Hays, W. L. (1988). Statistics (4th ed.). New York: Holt, Rinehart and Winston.

Holburn, S., Nguyen, D., & Vietze, P. M. (2004). Computer-assisted learning for
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Kazdin, A. E. (2001). Behavior modification in applied settings (6th ed.). New York:
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Lancioni, G. E., O’Reilly, M. F., Singh, N. N., Sigafoos, J., Didden, R., Oliva, D., Cam-
podonico, F., De Pace, C., Chiapparino, C., & Groeneweg, J. (2009). Persons with
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(2008a). Enabling two persons with multiple disabilities to access environmental
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Developmental Disabilities, 29, 21-28.

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(2008b). Three persons with multiple disabilities accessing environmental stimuli
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of Intellectual Disability Research, 52, 327-336.

Mechling, L. C. (2006). Comparison of the effects of three approaches on the fre-


quency of stimulus activations, via a single switch, by students with profound intel-
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Morse, A. R., Teresi, J., Rosenthal, B., Holmes, D., & Yatzkan, E. S. (2004). Visual
acuity assessment in persons with dementia. Journal of Visual Impairment and
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tion interventions for persons with developmental disabilities: Narrative review of
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Life Span and Disability / XII, 2 (2009), 129-139

Opportunities for Children and Youth with Intellectual


Developmental Disabilities:
Beyond Genetics

Michael F. Giangreco1

Abstract

Research on students with developmental disabilities in Italian schools


(Vianello & Lanfranchi, 2009) suggests patterns of greater than expect-
ed performance in scholastic and social skills compared to the pre-
sumed cognitive abilities of these students based on their genetic pro-
files. Vianello and Lanfranchi suggest that this may be attributable to
the inclusion of almost all Italian students with intellectual disabilities
in typical classrooms alongside their peers without disabilities. This ar-
ticle includes considerations for team members working in inclusive
schools by: (a) presenting a conceptual framework within which to pur-
sue inclusive education, (b) encouraging us to look beyond students’
disability characteristics to examine our own attitudes and practices,
and (c) changing our expectations and expanding opportunities avail-
able for students with disabilities. This article supports the contention
that environmental influences (e.g., inclusive schooling) can be potent
contributors to student performance and reminds us that we should not
allow disability related information to put limits on what students are
capable of learning, what they might be interested in, or what opportu-
nities are available to them – we should continually push the bound-
aries of these perceived limits – as we seek to do for all students.

Keywords: Attitudes, Inclusive education, Intellectual disabilities.

Received: 30 August 2009, Revised: 1December 2009, Accepted: 1December 2009.

 This article is a reply to the debate invited by Vianello & Lanfranchi (this Journal, issue

1/2009).
1
University of Vermont, Center on Disability and Community Inclusion. E-mail:
Michael.Giangreco@uvm.edu

129
Life Span and Disability Giangreco M. F.

1. Creating Opportunities for Children and Youth with


Intellectual and Development Disabilities: Beyond Genetics

In their review of the cognitive and adaptive profiles of children and


youth with four genetic syndromes associated with intellectual disabilities
(i.e., Down, Fragile-X, Cornelia deLange, Prader-Willi), Vianello and Lan-
franchi (2009) have explored a “deficit/surplus hypothesis”, namely the
extent to which children with these conditions have performed below
(deficit) or above (surplus) expectations of their presumed cognitive
abilities based on assessment of their mental age compared to their func-
tioning in a variety of areas (e.g., reading, writing, math, social adjustment).
Vianello and Lanfranchi suggest that implicit in much research on children
with genetic syndromes is the assumption that both inter and intra-syn-
drome differences are mainly due to genetic factors. They challenge this de-
terministic assumption by continuing a line of research designed to explore
the potential impact of environmental influences to produce corresponding
variations in cognitive and adaptive profiles among children who have bio-
logical/genetic bases for their intellectual disabilities.
A series of studies conducted in Italy on samples of children and youth
with the aforementioned genetic syndromes have reported a pattern re-
flecting an “adaptive surplus”, greater than expected performance in
both scholastic and social skills. Vianello and Lanfranchi have posited
that this difference may be attributable to the unique fact that almost all
students with intellectual disabilities in Italy are educated in typical class-
rooms alongside their peers without disabilities, rather than in special ed-
ucation classes, as is often the case in many other countries. In the United
States placement of students with intellectual disabilities in typical class-
rooms is not the norm nationally; only 16% of students with intellectual
disabilities (identified as “mentally retarded” in U.S. federal statistics) re-
ceive 80% or more their education in general education classrooms (U.S.
Department of Education, 2007). Yet positive outcomes of educating stu-
dents with intellectual disabilities in general education classes continue to
be reported (Giangreco, Dennis, Cloninger, Edelman, & Schattman, 1993;
Hunt & Goetz, 1997; McGregor & Volgelsberg, 1998; Cole, Waldron, &
Majd, 2004; Downing & Peckham-Hardin, 2007). Studies comparing spe-
cial education versus general education classes have found that students
with significant intellectual disabilities placed in general education class-
es: (a) have more access to academic instruction (Logan & Keefe, 1997;
Helmstetter, Curry, Brennan, & Sampson-Saul, 1998); (b) made greater
gains on both developmental and social competence measures (Fisher &
Meyer, 2002); and (c) exhibit higher levels of “happiness behaviors” when
interacting with typical peers (Logan, Jacobs, Gast, Murray, Daino, &
Skala, 1998).
In the remainder of this paper my aim is to highlight a series of con-

130
Opportunities for Children and Youth with Intellectual Developmental Disabilities

ceptual and practical points intended to aid educational teams support-


ing students with intellectual disabilities. These points support Vianello
and Lanfranchi’s premise that the functioning of students with genetical-
ly-based, intellectual disabilities can be improved beyond presumed ex-
pectations based on how and where they are educated. Given that a stu-
dent’s genetic profile includes factors over which school personnel have
no control, I will focus on attitudes and behaviors over which education-
al teams (e.g., school personnel, students with disabilities, families) can
exert control.

2. Framework for Conceptualizing Inclusive Education

Implementing effective education for all children, regardless of their


characteristics, depends on “… an inseparable triumvirate: values, logical
practices, and research” (Giangreco, 2002, p. 9). Education is first and fore-
most a values-driven enterprise reflected in social policy. Without a clear
value orientation upon which to base our educational practices and re-
search, they are at best haphazard, and at worst dangerous. Educating all
children and providing necessary supports to those with disabilities in in-
clusive settings is, at its most elemental, an international matter of civil and
human rights (UNESCO, 1994).
As educational team members, our efforts should be directed toward ex-
panding the availability of logical practices (e.g., service delivery configura-
tions, inclusive placement options, personnel utilization, meaningful cur-
riculum, effective instruction, necessary supports, assistive technology, self-
determination) designed to operationalize values that are consistent with
civil and human rights (Giangreco, in press). Values and corresponding log-
ical practices are followed by research designed to describe, understand,
and determine the effectiveness and impact of our practices to improve the
lives of our students with disabilities. Many questions remain about which
potentially logical practices are most effective for educating students with
disabilities in inclusive settings. This should be the focus of our educa-
tional research.
Whether or not students with intellectual disabilities are included in
general education settings is not a matter for research to determine – it is a
matter of social policy – one that has been implemented on a national scale
in Italy since the early 1970s. By approaching education sequentially and
cyclically through values, logical practices, and research, we can to move be-
yond genetics by learning what can from it to improve educational effec-
tiveness, while not allowing it to deter us from exploring the boundaries of
environmental influences.

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Life Span and Disability Giangreco M. F.

3. Examining Our Own Characteristics

Despite trends toward greater school inclusion internationally, too many


students, particularly those with intellectual disabilities, remain unnecessar-
ily segregated in special education schools and classes. Some are even seg-
regated within general education classes; — isolated from their classmates
and the life of the classroom as they are relegated to receive different in-
struction in the back or side of the classroom, often from an a well-intend-
ed, yet inadequately prepared assistants (Giangreco, Edelman, Luiselli, &
MacFarland, 1997). Yet, for every student who remains educationally segre-
gated there are other students with virtually identical attributes, abilities,
and needs who are successfully included in general education classes along-
side their peers without disabilities. This simple fact suggests that whether a
student with a disability is meaningfully included may have less to do with
his or her disability characteristics, genetic or not, and more to do with the
attitudes, skills, structures, and practices of the adults responsible for pro-
viding education (Giangreco, Carter, Doyle, & Suter, in press). While ac-
knowledging the valuable, educationally relevant, information that can be
gleaned by understanding the traits (e.g., cognitive, sensory, behavioral,
health, physical) of genetic syndromes associated with intellectual disabili-
ties, we need to put as much emphasis on examining our own characteris-
tics, attitudes, and behaviors as we do on understanding our students’ dis-
ability-related characteristics. As disability rights advocate, Dan Wilkins,
has printed on one of his advocacy t-shirts: “Your attitude just might be my
biggest barrier!” (www.thenthdegree.com/advocacy.asp).

4. Changing Expectations and Opportunities

Changing educational expectations and opportunities over time pro-


vides practical evidence consistent with Vianello and Lanfranchi’s adaptive
surplus hypothesis based on environmental influences. For example, the ge-
netic aspects of Down syndrome have not changed over the past 40 years,
but the lives of some people with Down syndrome have changed dramati-
cally during that same period due to environmental influences such as be-
ing included in general education classes. When I was an early-career spe-
cial education teacher in the 1970’s, expectations about the presumed capa-
bilities of students with Down syndrome and other students with moderate
or severe intellectual disabilities were markedly lower than they are in
many places today. Virtually all of these students in the United States were
educated in special education schools or classes, — some were institution-
alized. Cross-disability textbooks for aspiring special education teachers,
written by some of the most respected scholars of that era, gave scant at-
tention to students with this level of intellectual disability because of their

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Opportunities for Children and Youth with Intellectual Developmental Disabilities

presumed inabilities to learn certain types of academic content or to learn


at all. Such low expectations espoused by experts adversely contributed to
limited opportunities.
The lucky few had educational programs designed to acquire rudimen-
tary functional living skills (at least they were learning something poten-
tially useful). If any literacy instruction was attempted at all, it consisted of
a few functional sight words (e.g., exit, men, women, danger). Less for-
tunate students with significant intellectual disabilities were subjected to
the monotonous drudgery of completing nonsensical, age-inappropriate,
nonfunctional tasks (e.g., assembling and disassembling nuts and bolts,
putting pegs in boards, stringing beads, sorting random object, playing with
infant/toddler toys) meant to match their presumed mental age and ex-
pected capabilities.The culmination of such an inadequate public education
typically led to comparably limited post-school opportunities such as place-
ment in segregated day treatment programs, sheltered workshops, or no
services at all.
Although the construct of “mental age” may have some normative or
comparative utility, it has little value for educators in their daily work and
holds the dangerous potential to keep expectations low and inadvertently
limit access to chronologically age-appropriate interactions and curricula.
Due to the power our society confers on test results, the assignment of a
mental age that is substantially lower than a student’s chronological age can
lead to harm if a person with an intellectual disability is treated as an “eter-
nal child” (Wolfensberger, 1975). This initial low expectation can be self-
perpetuating, whereby the resulting segregated education and inadequate
educational programming leads to minimal positive outcomes, stereotypic
or problem behaviors, and justification by some school personnel that con-
tinued segregation is justified and necessary. In other words, when people
with intellectual disabilities are treated like infants or young children re-
gardless of their chronological age, it is not surprising if they behave in ac-
cordingly immature ways or exhibit maladaptive behaviors that communi-
cate their discontent.
Now fast forward to the turn of the 21st century. The genetic aspects of
Down syndrome have not changed, but for some students with intellectual
disabilities (although still too few internationally) the environmental fac-
tors have changed substantially (e.g., higher expectations, inclusive place-
ments, access to general education curriculum, differentiated instructional
practices, supports). This has resulted in correspondingly positive outcomes
that were not even dreamt about just 30 years earlier, yet have become a re-
ality for this group of students and others with genetic conditions associat-
ed with intellectual disabilities.
Erin McKenzie, a young woman with Down syndrome, whose parents
successfully advocated for her inclusion in general education classes
throughout her school career (McKenzie, 2008), is a classic example of what

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Life Span and Disability Giangreco M. F.

Vianello and Lanfranchi characterize as adaptive surplus (functioning


above expected levels associated with her disabilities). Among many
demonstrations of this adaptive surplus, a notable example was when Erin
wrote and presented an eloquent speech to the gathering of guests and
graduates at her own 2004 high school graduation ceremony. In her speech
(video and text online at: http://library.otterbein.edu/ErinMcKenzie/-
video.htm) she reminisced about what she loved most about high school.
Not surprisingly, like many teenagers, Erin told the audience “The best
part was being with friends in class, at meetings, at parties, everywhere!” To
say the least, it was uncommon that she, as student with Down syndrome,
had composed (with some help from her mother) and given a commence-
ment speech in front of hundreds of people, that she was academically
skillful enough to read from her prepared text, and even that she displayed
normalized social behaviors that she may not have acquired without the
benefits of inclusive schooling. These included the composure and stage
presence she displayed, the unobtrusive wave of the hand to acknowledge
her family in the audience, and the way she tossed back of her long brown
hair, with a simultaneous flip of the head and a hand, in a classic maneuver
modeled on the behavior of so many of her teenage girlfriends. It is what
she shared next that further sets this story apart from the experiences of
other students with Down syndrome who preceded her or her contempo-
raries who still have inadequate access to general education classes and
curricula. Reading from her prepared remarks she said: “We learned new
things in high school and we discovered what we were good at or liked to
do. I learned that I love Shakespeare! And Theatre! And Choir! And Dra-
ma Club!”.
Of all the things she that were most important to her during high
school, it was her love of great literature – Shakespeare among others –
that captured her imagination and interest. As documented by her moth-
er in a letter to her teachers, Erin didn’t just enjoy these pieces of litera-
ture and performances, she understood them and made connections be-
tween the literature and what she was learning in other classes (e.g., his-
tory). We cannot predict which subjects, experiences, teachers, or class-
mates will be the spark, make the difference, or lead to a personal inter-
est or breakthrough for particular student. It is one of the reasons we ex-
pose students to a wide array of classes, teachers, and classmates. Histor-
ically most American students with intellectual disabilities have not been
sufficiently exposed to or taught appropriately modified, age-appropri-
ate, academic curricular content available to students without disabili-
ties. As Erin’s mother wrote to her teachers: “I doubt very much that Erin
would have gotten any Shakespeare or other great literary pieces in the
special education classroom for students with cognitive and develop-
mental disabilities. That would have been unfortunate” (McKenzie,
2008, pp. 36-37).

134
Opportunities for Children and Youth with Intellectual Developmental Disabilities

Although it remains important for students with intellectual disabilities


to acquire functional living skills and it is logical to select curricular targets
based on the student’s current level of performance and known learning
characteristics, “quality instruction should provide ample opportunities for
students to surprise us with their capabilities.” (Giangreco, in press). Only
within the past few years has access to the general education curriculum
been recognized as important for students with the range of intellectual dis-
abilities (Browder & Spooner, 2006; Wehmeyer, 2006; Dymond, Renzaglia,
Gilson, & Slagor, 2007; Downing, 2008). In essence this change in social pol-
icy reflects an underlying assumption that we have not adequately tapped
the adaptive surplus of many of our students – that we expect that environ-
mental influences (e.g., access to general education curriculum, research-
based instruction) will result in improved outcomes beyond what has been
expected or accepted in the past.
A primary challenge teachers encounter is understanding how students
with intellectual disabilities can be successfully included in general educa-
tion activities when there is a substantial discrepancy between their pre-
sumed or assessed level of functioning and those of their classmates with-
out disabilities. Although it is beyond the scope of this article, several wide-
ly available approaches provide mechanisms for students representing a
wide range of abilities and needs to be successfully included in the same
classes and activities, — some of these include: (a) partial participation
(Baumgart et al., 1982), (b) differentiated instruction (Tomlinson, 2001;
Kronberg, 2007), (c) universal design for learning (Rose, Meyer, & Hitch-
cock, 2005), (d) multi-level instruction (Peterson & Hittie, 2010), and (e)
curriculum overlapping (Giangreco, 2007).These approaches verify that
students with intellectual disabilities need not function at the same acade-
mic or cognitive level as their peers without disabilities in order to have
meaningful participation in shared educational activities because each stu-
dent may pursue individually determined learning outcomes targeted to his
or her respective needs.
While access to inclusive school placements and properly adapted gen-
eral education curriculum are being sought for more school-aged students
with intellectual disabilities, progressive post-school opportunities are pro-
viding further evidence that our graduates’ futures need not be limited by
their genetic traits. Supported competitive employment has become in-
creasingly available for adults with intellectual disabilities (Wehman, Inge,
Revell & Brooke, 2007). Recently, inclusive college-based programs and ex-
periences have been developed to provide adult learning opportunities for
students with intellectual disabilities (Doyle, 2003; Feldman, Fialka &
Rossen, 2006; Grigal & Hart, 2009). Advances in both of these areas also
suggest that adaptive surpluses remain untapped for many people with in-
tellectual disabilities.

135
Life Span and Disability Giangreco M. F.

5. Conclusion

Information garnered about genetic syndromes can be useful to educa-


tional teams, but it is unhelpful if it is used to predict the cognitive potential
or the upper limits of a student’s functional abilities and correspondingly to
restrict their opportunities. This is especially problematic if the student has
not been sufficiently exposed to a concept or skill or has not received on-
going, competent instruction using research-based interventions. If we must
err, it is better for us to err on the side of hope and opportunity. Donnellan’s
(1984) criterion of the least dangerous assumption, asserts that, “in the ab-
sence of conclusive educational data, educational decisions should be based
on assumptions which, if incorrect, will have the least dangerous effect on
the student” (p. 142).
Although, we do not always succeed in our efforts to teach some chil-
dren with intellectual disabilities, pushing the limits of our current under-
standing and practices is what helps our field progress. As Donald Baer
(1981) wrote many years ago:
“To the extent that we sometimes finally succeed in teaching a child
whom we have consistently failed to teach in many previous efforts, we may
learn something about teaching technique. Too often, in my opinion, we
teach children who are not only capable of teaching themselves, but eager
to do so; in their wisdom, they cheat us of learning completely how the trick
is done because they do some of it for us and do it privately. It is when they
cannot do much if any of it for us that we get to find out how to do all of it
ourselves, as teachers.” (p. 94).
As we more forward, it is essential that we increasingly involve not only
families, but people with disabilities themselves into the educational deci-
sion-making process. For them to be engaged in this process will require an
early and ongoing emphasis on self-determination (Wehmeyer, 2005). As
many self-advocates are fond of reminding the professionals, “Nothing
about me without me!” Vianello and Lanfranchi’s hypothesis that inclusive
educational placements may contribute to an adaptive surplus in children
with genetic syndromes is supported by existing research as well the real
life experiences of families around the world who have witnessed their chil-
dren exceed expectations. As long as genetic syndromes continue to exist,
educational teams would be well advised to be informed about the aspects
of these syndromes that will help them design a quality education plan, then
to set aside the disability label, and move forward by creating opportunities
without setting limits — beyond estimates of mental age and beyond ge-
netics.

136
Opportunities for Children and Youth with Intellectual Developmental Disabilities

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Life Span and Disability / XII, 2 (2009), 141-149

The “Surplus” Effect in Developmental Disability:


A Function of Setting or Training (or Both)?

Thomas E. Scruggs1 & Kim Michaud 2

Abstract

Vianello and Lanfranchi (2009) have provided evidence that individuals


with mental retardation are capable of performing in academic and social
areas well above expectations taken from intellectual assessments. They
suggest these important gains may be due, at least in part, from the en-
riched inclusive education students with mental retardation receive in Ital-
ian schools. In response, we discuss some existing evidence of individuals
with developmental disabilities in comparative placements in the United
States and other countries. We also discuss the implications of a survey of
Italian and American teachers of attitudes toward teaching students with
disabilities in inclusive classrooms, and we describe the implications of ef-
forts to train appropriate life skills to individuals with disabilities, con-
ducted largely in separate settings. We conclude that inclusive placements
apparently have done much to improve the functioning of individuals
with mental retardation, but additional structures and supports may be
needed to maximize their potential.

Keywords: Inclusion, Developmental disabilities, Surplus effect

Received: 29 October 2009, Revised: 25 November 2009 , Accepted: 25 November 2009.

 This article is a reply to the debate invited by Vianello & Lanfranchi (this Journal, issue

1/2009).
1George Mason UniversityM. Address: College of Education and Human Development,

MSN 1D5, George Mason University, Fairfax, VA, USA, 22030. E-mail: tscruggs@gmu.edu
2
George Mason UniversityM. E-mail: kmichaud@gmu.edu

141
Life Span and Disability Scruggs T. E. / Michaud K.

1. Social Adaptability and Developmental Disability:


A Function of Setting or Training (or Both)?

Vianello and Lanfranchi (2009) provided evidence, from a number of in-


vestigations involving Italian students with developmental disabilities, that
school performance and social adaptability are higher than expected from
their mental ages. They suggested that this “surplus effect” might be ex-
plained, at least in part, by Italy’s impressive history in implementing large-
scale educational inclusion in 1977 (and subsequent relevant legislation, see
Vianello, 1996). It is difficult to draw firm conclusions from the data present-
ed, however, due to the fact that there are few groups of Italian students who
did not benefit from inclusive environments to which these scores might be
compared. At a minimum, however, Vianello and Lanfranchi have demon-
strated that individuals with developmental disabilities are capable of per-
forming far beyond levels predicted from their mental age.
Appropriately, Vianello and Lanfranchi have called from evidence from
other countries, asking of their own findings, “is this also valid, in an inter-
national context” (p. 49), of individuals with developmental disabilities? If,
for example, the implementation of inclusive placements in Italy has result-
ed in higher levels of social and academic functioning, students with devel-
opmental disabilities in other countries may not have made similar gains.
In our response to this important paper, we discuss some existing evi-
dence of individuals with developmental disabilities in inclusive and more
restrictive placements in the United States and other countries, to deter-
mine whether this evidence supports the hypothesis of Vianello and Lan-
franchi. We also discuss the implications of a survey of Italian and Ameri-
can teachers regarding their attitude toward teaching students with disabil-
ities in inclusive classrooms, and describe the implications of efforts to train
appropriate life skills to individuals with disabilities.

2. Inclusive vs. More Restrictive Placements

It is difficult to make a direct comparison with the data presented by


Vianello and Lanfranchi, as students in the United States, for example, have
been involved in a number of different placement alternatives, and have
not necessarily been provided with either inclusive or special classrooms.
Williamson, McLeskey, Hoppey, and Rentz (2006) analyzed data from the
U.S. Department of Education, and reported that, although the proportion
of students with mental retardation or developmental disabilities did not
change over a ten-year period, placements for these students changed con-
siderably. From 1989-1990 to 1999-2000, the proportions of students with
mental retardation placed in general education classrooms for part or most
of the school day increased from 27.3% to 44.7%. In addition, placement in

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The “Surplus” Effect in Developmental Disability: A Function of Setting or Training (or Both)?

separate settings decreased from 72.7% to 55.3%. Finally, Williamson et al.


(2006) reported that the overall proportion of students with mental retar-
dation served in separate facilities decreased by 46%. Because of these
placement changes, it is more difficult to make general conclusions about
placement in the United States. However, because of the variability in
placements, it is possible to test the hypotheses of Vianello and Lanfranchi
to some extent by comparing students enrolled in more vs. less integrated
settings. Unfortunately, in most cases the students in these investigations
are not identified with respect to specific genetic conditions (e.g., Down
Syndrome, de Lange Syndrome); nevertheless, there is enough information
to evaluate functioning in different settings across subgroups of individuals
with developmental disabilities.
One significant source of information is from individuals who were for-
merly served in large state-operated institutions, and who have subse-
quently moved to community settings. In the US, for example, in the period
from 1977 to 1998, the number individuals served in institutions was re-
duced from 154,638 to 50,034 (Kim, Larsin, & Lakin, 2001). Kim et al.
(2001) reviewed 33 studies of residential service outcomes, and concluded
that in nearly every investigation, individuals moving from institutions to
community settings demonstrate statistically significant increases in adap-
tive behavior, although this was not true without exception. However, it is
also possible that these commonly-observed improvements are the conse-
quence of, at least in part, the increased number of opportunities for indi-
viduals in community settings to exhibit skills they already possessed. The
observation, in some longer-term studies, of a “plateau effect” (i.e., individ-
uals gain initially, but do not continue to gain) supports this possibility
(Felce & Perry, 2009). Even so, however, such findings point to a higher
quality lifestyle for the individuals involved.
More direct evidence can be found in the inclusive school literature. An
early research synthesis of 50 studies by Carlberg and Kavale (1980) indicat-
ed that students with mental retardation fared better overall in inclusive
placements than in special classes (although the same was not true for stu-
dents with learning and behavioral disabilities). These findings must be tem-
pered by the fact that special classes were different at that time, as were defi-
nitions of mental retardation. More recently, Cole,Waldron, and Majd (2004)
compared the academic achievement of students with disabilities across in-
clusive and traditional settings.With a subsample of 101 students with mental
retardation who had been assigned to either setting, Cole et al. concluded
that students with MR in inclusive settings scored slightly (but not statistical-
ly) higher in reading, but scored the same in math. Interestingly, in this study,
students without disabilities in inclusive classrooms performed better on aca-
demic measures than their counterparts in traditional settings.
McDonnell, Thorson, Disher, Mathot-Buckner, Mendel and Ray
(2003) investigated the growth of 14 students with developmental disabili-

143
Life Span and Disability Scruggs T. E. / Michaud K.

ties over a school year when placed in inclusive elementary grade class-
rooms. They reported that over the year, all students except one exhibited
growth on a measure of overall adaptive behavior. However, this level of
growth (although on a normative score) was trivial, amounting to only
about .07 standard deviation units. Nevertheless, the mean adaptive behav-
ior scores of this sample, similar to those of Vianello and Lanfranchi, was
much higher than expected from the IQ scores. Achievement of nondis-
abled students in inclusive and traditional classrooms was the same, sug-
gesting the presence of students with developmental disabilities did not im-
pact the achievement of nondisabled students.
A similar investigation in Ireland (Hardiman, Guerin, & Fitzsimons,
2009) revealed that social competence ratings did not differ between stu-
dents with moderate intellectual disability in inclusive and segregated set-
tings. In this investigation also, both groups of students (in inclusive and
segregated settings) exhibited levels of adaptive behavior above that pre-
dicted by their degree of disability.
Hatton, Wheeler, Skinner, Bailey, Sullivan, Roberts et al. (2003) investi-
gated adaptive behavior scores of individuals with Fragile X Syndrome be-
tween the ages of 1 and 12 years, and a mean of 4.4 assessments over time.
They reported that adaptive behavior skills increased steadily, but gradual-
ly, over time. These students were identified through genetics clinics, devel-
opmental evaluation centers, and early intervention programs, so there is
reason to believe that many, if not most of them were not being served in in-
clusive placements. It was also reported that students displayed IQs superi-
or to adaptive behavior below the age of 10, but that these scores appeared
to converge in later years. Such data suggest that some individuals with de-
velopmental disabilities may make progress on adaptive behavior, regard-
less of academic setting.
Even when individuals with developmental disabilities in inclusive set-
tings are compared across Italian and American samples, however, these
comparisons may not be entirely equivalent. It is possible, for example, that
students with mental retardation in inclusive Italian schools receive more
teacher attention than those in American schools. Palladino, Cornoldi,
Vianello, Scruggs and Mastropieri (1999), for example, provided evidence
that Italian schools relied more on teachers, and less on paraprofessionals,
to implement direct service delivery in inclusive classrooms than was the
case in many American schools.
Overall, then, data from America and other countries suggest that stu-
dents with developmental disabilities in inclusive placements often exhibit
an academic and behavioral “surplus” relative to mental age. However,
there is some evidence that individuals in other placements may also
progress in these areas.

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The “Surplus” Effect in Developmental Disability: A Function of Setting or Training (or Both)?

3. Teacher Attitudes

Of particular relevance to the issue of the benefits of inclusive instruc-


tion is the attitude of general education teachers toward students with dis-
abilities. Cornoldi, Terreni, Scruggs and Mastropieri (1999) surveyed gen-
eral education teachers in 10 schools in northern and central Italy, using
items taken from the survey synthesis of Scruggs and Mastropieri (1996).
Attitudes of Italian teachers were seen to be generally more favorable to-
ward inclusion than their American counterparts, possibly because of the
history of inclusion in Italy. However, Italian teachers, even slightly more
than American teachers, identified a need for more support in order to pro-
vide high quality instruction for students with disabilities. This support in-
cluded additional time, additional training, additional personnel and mate-
rial resources. In both samples, levels of satisfaction with supports were low.
For example, only 19% of Italian teachers felt they had sufficient time for
teaching students with learning difficulties in their classrooms, and only
22% felt they had sufficient skills and training for this purpose. These find-
ings suggest that optimal inclusive education for all students could be max-
imized with additional supports in the form of time, training, personnel, and
material resources.

4. Self-Help Skills

A related issue to social and academic improvement is the matter of


how these positive changes are brought about. For example, do individuals
with developmental disabilities acquire important adaptive behaviors sim-
ply by proximity to normally-functioning individuals? This may not always
be the case, for example Mastropieri and Scruggs (1985-1986) indicated
that preschoolers with developmental disabilities were more likely to initi-
ate social interactions when these were prompted and reinforced, rather
than simply modeled by normally-achieving students. Alwell and Cobb
(2006b) conducted a meta-analysis of interventions for functional life skill
curricula on secondary-aged youth with developmental disabilities. None
of these studies, as it happened, had been conducted in inclusive general
education classes, but rather in settings that ranged from self-contained
classrooms to vocational training centers. These interventions averaged
12-50 sessions over about four months for students with moderate to se-
vere disabilities; fewer sessions were required for those with milder cogni-
tive disabilities. Alwell and Cobb (2006a) offered cautious, yet positive
support for transition-related curricular interventions, stating, “…with
carefully planned and implemented instruction, all students with disabili-
ties are able to acquire various functional life skills” (Alwell & Cobb,
2006a, p. 5).

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Life Span and Disability Scruggs T. E. / Michaud K.

The studies presented in this meta-analysis demonstrated the wide vari-


ety of important life skills that can be taught to individuals with develop-
mental disabilities. For example, Cuvo, Davis and Gluck (1991) taught stu-
dents budgeting skills utilizing computer assisted instruction and work-
books. Purchasing skills that could be generalized for shopping activities
were taught using videotape modeling followed by probes and practice in
real stores (Mechling, Gast, & Langone, 2002). Denny and Test’s 1995 study
utilized modeling, practice and praise with a specific strategy to help stu-
dents to acquire money skills they could use for making purchases with
cash. Hoge, Dattilo and Williams (1999) utilized an 18 week course that in-
volved community instruction, as well as family, and leisure coach support
to facilitate the general awareness of leisure education activity options.
Several studies utilized task analysis in combination with minimal
prompting to improve life skills. Vandercook (1991) helped students ac-
quire the leisure skill of learning how to properly socially interact, make
choices and learn how to play pin ball and to bowl. Homemaking skills that
emphasized various cleaning and safety activities were taught using similar
strategies (Domaracki & Lyon, 1992). Arnold-Reid, Schloss and Alper
(1997) taught cooking and meal preparation skills, as well as how to recog-
nize and follow nutritional guidelines. Similarly, Frea (1997) taught students
how to increase their awareness of environmental stimuli and to reduce
stereotypic/aberrant behavior.
Alwell and Cobb (2006a) referred to the tension that exists in the Unit-
ed States regarding secondary schooling, both philosophical and practical,
in “teaching youth with disabilities the skills needed to function in and suc-
ceed beyond school, versus including these same youth in general educa-
tion classrooms where curriculum is largely focused on academics”(p. 4).
Consequent to the No Child Left Behind Act in the United States, national
secondary education curricular focus has become focused, almost exclu-
sively, on college preparatory academic achievement. Hehir (2009) ex-
plained the need to balance education both within and without the general
education classroom for individuals with intellectual disabilities. Though
the settings for teaching functional skills to this population may at times be
best located outside of the general education classroom with opportunities
to learn and practice them within the community itself, there are learning
opportunities that can take place only within the traditional secondary cur-
ricula, and within the typical classroom setting.
Research in the life skills area has identified a number of important
skills that individuals with developmental disabilities may need to acquire,
especially as they begin to move out of schools and into community set-
tings. In the research reviewed by Alwell and Cobb (2006b), these self-help
skills (e.g., money skills, leisure skills, cooking) were taught largely outside
general education classrooms, which did not usually include such training.
And although such skills potentially could be taught to individuals with de-

146
The “Surplus” Effect in Developmental Disability: A Function of Setting or Training (or Both)?

velopmental disabilities in general education classes, additional time, train-


ing, and resources may be necessary to accomplish this, at least in the Unit-
ed States.

5. Summary

Vianello and Lanfranchi (2009) have provided important evidence sug-


gesting the presence of a “surplus effect,” in which students with develop-
mental disabilities learn social and academic skills beyond expectations
based upon mental age. This may be due, at least in part, to the inclusive en-
vironment provided by Italian schools. Although this observation is sup-
ported to some extent by comparisons in American and other schools, it al-
so may be important to consider the needs expressed by Italian and Amer-
ican teachers for additional supports, and the special needs of individuals
with developmental disabilities to acquire significant academic and behav-
ioral skills that may not be taught in age-appropriate general education
classrooms. The tasks for research and practice in the future, then, may be
to insure that the twin goals of appropriate instruction, and inclusive edu-
cation, can be met to maximize learning and behavioral outcomes for indi-
viduals with developmental disabilities.

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Palladino, P., Cornoldi, C., Vianello, R., Scruggs, T.E., & Mastropieri, M.A. (1999).
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149
Life Span and Disability XII, 2 (2009), 151-159

Diagnosis of Intellectual Disability: comparison between


clinical criteria and automatized procedures

Santo Di Nuovo1 & Serafino Buono2

Abstract

In a previous work, published in this Journal (n.10/2), we outlined the util-


ity to find shared criteria for diagnosing the levels of Intellectual Disabili-
ty / Mental Retardation. We presented a computerized algorithm based on
the predefined and standardized integration of scores derived from intel-
lectual and adaptive tests.
In this paper we will report the results of the comparative analysis between
the commonly used clinical diagnoses and those derived from the autom-
atized procedure, applied to the same cases.
The study was conducted on a sample of 100 diagnoses, regarding differ-
ent levels of Mental Retardation (n=56), Borderline Intellective Function-
ing (BIF, n=25), and cases without disability (n=19).
The comparison of the two modality of diagnosis was performed through
factorial analysis of correspondences. The analysis showed that the clini-
cal diagnosis an that based on the computerized algorithm agree with re-
spect to the principal dimensions explaining the evaluation criteria.
The overall concordance is 68%, with higher peak for the normal subjects
and lower for the BIF, resulting the more complex diagnosis.
The main differences were object of an in-depth analysis, at a qualitative
level, examining the profiles of discrepant cases, regarding always adja-
cent levels.
It was further verified how much the diagnosis was related to the only val-
ue of IQ, obtaining a correlation (Spearman’s rs) of .44 with the clinical
diagnosis and .47 with the computerized one.
In conclusion, the standardized algorithm applied by the software supplies a

Received: 31 July 2009, Revised: 20 October 2009, Accepted: 20 October 2009.

1 University of Catania and Enna ‘Kore’, Italy, e-mail: s.dinuovo@unict.it


2
IRCCS ‘Oasi’, Troina, Italy, e-mail: fbuono@oasi.en.it

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Life Span and Disability Di Nuovo S. / Buono S.

diagnosis largely overlapping with that based on the clinical evaluation, but
with differences justifying the comparative use of the different approaches.

Keywords: Intellectual Disability, Mental Retardation, Borderline Intel-


lectual Functioning, Psychometric evaluation

1. Introduction

The evaluation of the existence and the degree of Intellectual Disability


has to be based on internationally shared criteria, according to the DSM-
IV-TR (A.P.A., 2000) and ICD-10 (W.H.O., 1992) definitions and to the
more recent acquisitions (Luckasson, Borthwick-Duffy, Buntx, Coulter,
Craig, Reeve et al., 2002).
To apply these criteria, the integration of psychometric and clinical
methods needs a complex mediation. So, it may be useful to make homoge-
neous this evaluation using standardized algorithms.
The clinical diagnosis of Intellectual Disability (Schalock & Luckasson,
2005) takes into account, besides the Intellectual Quotient, also the evalua-
tion of other relevant variables, deducible from information about subject’s
behavior and from reports by parents and/or personnel about the overall
functioning of the examined person.
In the diagnosis of Intellectual Disability made at the Institute IRCCS at
Troina – as in other centres specialized for this kind of diagnosis – the eval-
uation synthesizing the available elements is made by a diagnostic équipe
composed of specialized physicians, psychologists, pedagogists, social work-
ers, interacting with families.
This approach takes into account, besides IQ data, also variables not
quantifiable through psychometric instruments, qualitative observations re-
ferring to social context, to its attitude toward disability, to the available
support; moreover, to the developmental aspects of the deficit and its con-
sequences, and – last but not least for importance – to the affective, emo-
tional and motivational features fully understandable at clinical interview.
The clinical evaluation has to be integrated with the psychometric one,
according to already quoted APA and WHO criteria, with a final mediation
if these evaluations are discordant, e.g. the tests underscore the person’s re-
al capacity of social relation (referred by parents or directly observed), or
at the contrary, the intellectual test scores are surprisingly higher than ex-
pected on the basis of the social adjustment the subject, due to his/her co-
morbid disturbances.
We implemented in a software an algorithm, based on artificial neural
networks, widely described in Aa. Vv. (2007), which makes in a standard-
ized way the procedure of integration between the data of intellectual tests
(IQ Wechsler is applicable, or an equivalent score deducted from other

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Diagnosis of Intellectual Disability: comparison between clinical criteria and automatized procedures

tests3) and the scaled scores obtained in the Vineland Adaptive Behavior
Scale (VABS), with reference to communication and socialization areas.
The algorithm is based therefore exclusively on psychometric tests
scores (one of these based on observation), integrating them in a rigorous-
ly standardized way and avoiding ‘subjective’ evaluations on the part of the
personnel.
The schema used for the diagnosis through the computerized algorithm
may be synthesized as follows (table 1).

Table 1 - Schema for the diagnosis integrating IQ and index of adjustment

Based on total IQ Based on adjustment


(Wechsler or derived by other tests): Position on the VABS normative range1
Higher Equal Lower

86-90 Normal Normal Normal Normal


76-85 Borderline Intellectual Functioning Normal BIF BIF
70-75 Borderline Intellectual Functioning2 BIF BIF Mild

56-69 Mild Mental Retardation BIF Mild Mild


50-55 Mild Mental Retardation Mild Mild Moderate

41-49 Moderate Mental Retardation Mild Moderate Moderate


35-40 Moderate Mental Retardation Moderate Moderate Severe

26-34 Severe Mental Retardation Moderate Severe Severe


20-25 Severe Mental Retardation Severe Severe Profound

1
The criteria to locate the diagnosis with respect to the normative range are based on the
standardization for the Intellectual Disability of the Vineland Adaptive Behavior Scale. As cut-
off was used the subdivision in three levels presented in the VABS Manual (Sparrow, Balla, &
Cicchetti,1984, Italian edition 2003).
2 According to DSM-IV-TR (A.P.A., 2000) diagnostic criteria, it is possible to make diag-

nosis of Mental Retardation in persons “with IQ between 70 and 75, who exhibit significant
deficits in adaptive behavior. Conversely, Mental Retardation would not be diagnosed in an in-
dividual with an IQ lower than 70 if there are no significant deficits or impairments in adaptive
functioning.” (p. 42).

The aim of the research presented here is to validate this integrated


modality of diagnosis, comparing it in a blinded way with the diagnosis in-
dependently made by the diagnostic équipe, according to the above quoted
criteria, and with that obtained on the basis of only IQ.

3 The tests chosen to change scores in equivalent IQ, when Wechsler Scale is not applicable, are:

Coloured Progressive Matrices test (CPM), Leiter International Performance Scale (LIPS), Griffiths’
Mental Development Scale (MDS), Psycho Educational Profile Revised (PEP) for autism.The tests,
and the reasons of the choice, are described in detail in the previously quoted article (Aa.Vv., 2007).

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Life Span and Disability Di Nuovo S. / Buono S.

2. Sample

The cases included in the study were 100, randomly chosen among those
diagnosed in one-year period in the IRCCS ‘Oasi’ Institute.
The cases with Intellectual Disability was divided in the following
groups on the basis of the diagnosis included in the clinical record:
- Mild Mental Retardation: n=34
- Moderate Mental Retardation: n= 21
- Severe Mental Retardation n=1 (in this only case a test of intelligence
was applicable; other cases of this level, or cases of Profound Mental
Retardation, have not been included, due to the unavailability of cog-
nitive tests useful for the computerized diagnosis)
- Borderline Intellectual Functioning: n=25
N=19 cases without any disability were added. They had been submitted
to the équipe for learning disabilities but they did not fit the criteria for the
diagnosis of Borderline Intellectual Functioning.
The diagnoses had been made independently by the équipe according
with the usual criteria, and have been reformulated by means of the soft-
ware applying the specific algorithm.

3. Analysis of data

The raw correlation between the two evaluations, computed by means of


the Spearmans’ rank coefficient rs, after the co-graduation of the levels, is
.64. This first overall comparison shows a wide but not complete overlap-
ping of the different classification criteria.
A Correspondence analysis, based on a two-way table (Greenacre,
1984), was performed. The diagnostic groups with a sufficient number of
cases were considered, excluding the ‘Severe Mental Retardation’ diagno-
sis, due to very small number of cases: only one according to the clinical
evaluation, two according to the computerized algorithm.
The aim of Correspondence analysis is to examine the relationship be-
tween categorical variables, decomposing contingency tables into row and
column coordinates, which are displayed in a graph. Categories that are
similar to each other appear close to each other in the graph, representing
the principal dimensions.The frequencies related to each categories (mass),
the indices of variability (inertia), and an equivalent of communality in fac-
torial analysis (here called quality) are computed.
Table 2 synthesizes the results of the analysis, while the graphic repre-
sentation is shown in figure 1.
The values related to the two diagnostic modalities are very similar and
in some cases identical: i.e., in the graph the points for the coordinates per-
taining to the different diagnostic groups are quite completely overlapping.

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Diagnosis of Intellectual Disability: comparison between clinical criteria and automatized procedures

We may conclude that substantially the clinical diagnosis and that based on
the computerized algorithm agree with respect to the principal dimensions
explaining the evaluation criteria.

Table 2 - Results of correspondence analysis. Differences in diagnostic categories


between clinical and software evaluation

Mass Quality Inertia Factor 1 Factor 2

Clin Softw Clin Softw Clin Softw Clin Softw Clin Softw
Normals 0.19 0.19 1.00 1.00 0.61 0.62 1.73 1.74 -0.40 -0.40

BIF 0.26 0.27 0.86 0.86 0.18 0.18 -0.04 -0.05 0.78 0.76

Mild 0.35 0.32 0.77 0.76 0.14 0.13 -0.45 -0.44 0.31 0.36
Moderate 0.20 0.22 0.99 0.99 0.40 0.41 -0.83 -0.82 -1.12 -1.06

General Chi-square = 130,90, g.l. 9, p<.001; total inertia = 1.34

Figure 1 - Plot of diagnostic categories in the two factorial dimensions emerging


from correspondence analysis
2

Clinical Evaluation

Software Evaluation
1
B.I.F.

Mild

0
Normal

-1 Moderate

-2
-2 -1 0 1 2

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Life Span and Disability Di Nuovo S. / Buono S.

To evaluate in a more analytical way the discrepancies, we can directly


inspect the contingency table crossing the two diagnoses for the same sub-
jects. In this case the diagnosis of ‘Severe Mental Retardation’ is considered
too. The table 3 shows concordances and differences, along with a summary
of the percentages of congruent diagnostic categorization.
These percentages are generally high, although few cases of discrepan-
cies are registered, regarding adjacent levels, never more than one level of
difference. The overall percentage of concordance is 68 out of 100 cases,
with higher peak for normal subjects (89.5%) and lower for BIF (60.0%)
and Mild MR (55.9%), diagnostic categories being – as all clinicians know
well – the most complex and difficult to discriminate.

Table 3 - Contingency table between clinical evaluations (rows) and software (co-
lumns). Percent of congruent classifications by rows and columns

Diagnosis through software

Mild Moderate Severe


Clinical Normals BIF Total %
MR MR MR
Diagnosis
Normals 17 2 0 0 0 19 89 .47

BIF 2 15 8 0 0 25 60 .00

Mild MR 0 9 19 6 0 34 55 .88

Moderate MR 0 0 4 16 1 21 76 .19

Severe MR 0 0 0 0 1 1 100.00

Total 19 26 31 22 2 100

% 89.47 57.69 61.29 72.73 50.00 68 .00

We found it interesting to further elaborate, at a qualitative level of


analysis, where the main diagnostic differences are located, and what the
profile of the discrepant cases are (evidenced in the table).
Table 3 shows that the most frequent divergences are found between the
diagnoses of BIF and Mild MR (17% out of the total). In 9 cases the diag-
nosis indicated a superior level using the algorithm, in 8 cases the contrary
happens.
Six cases of divergence regard the diagnoses between Mild MR and
Moderate MR, clinical diagnosis being the more favorable, while in other 4
cases the opposite is found.

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Diagnosis of Intellectual Disability: comparison between clinical criteria and automatized procedures

We focused on these discrepancies (others being very marginal) the


qualitative analysis of the profiles in the subgroups where the diagnostic
discordance was verified.
As regards the chronological age, the cases in which the algorithm over-
values the level of the clinical diagnosis – attributing the BIF level instead
of Mild MR - result to have a mean age slightly inferior with respect to the
cases for which the contrary happens (114.67 months vs 164.88).
The cases, too, where the diagnosis of Mild vs Moderate MR is more
favourable if it is made using the software, have a lower age: 168.25 months
vs 249.17 of the cases where the clinical diagnosis is more favorable. For
both the comparisons the difference is not statistically significant (Mann-
Whitney U test, p>.05): although a slight bias linked to age may be hypoth-
esized, the discrepancies between the evaluations cannot be considered dif-
ferent from random ones.
It was interesting to repeat the same comparison with reference to
Wechsler IQ.
The mean of the group to whom the algorithm assigned a BIF level,
while a Mild MR was diagnosed by the clinical evaluation, is 62.78 against a
mean of 57.12 for the cases assigned by clinical assessment to BIF instead
Mild MR. This difference is statistically significant (Mann-Whitney U test,
p<.05).
The same trend, although not reaching the significance threshold, is reg-
istered regarding the discrepancies between the diagnoses of Mild and
Moderate MR; i.e., the cases with a more favourable computerized diagno-
sis have an higher mean IQ (43.25) than the cases for whom the opposite is
true (39.83).
The differences between the groups with disagreeing diagnoses are very
limited with respect to the two variables of the Vineland Adaptive Scale en-
tering in the computerized algorithm. The social adjustment, as measured
by the test, seems not to influence the diagnostic discrepancies.
To answer the second question posed in our study, we tested how much
the diagnosis is related to the IQ alone.
The classification based only on IQ value (according to the criteria of
correspondence between IQ and levels shown in the left column of table 1)
shows a Spearman’s r s rank coefficient .44 with clinical diagnosis and .47
with the computerized one. The overlapping is wide, therefore is more rele-
vant the significant difference quoted above in the cases of discrepancy be-
tween BIF and Mild MR diagnoses, where IQ has a main incidence.

4. Discussion and conclusions

The standardized algorithm applied by the software supplies a diagnosis


widely agreeing (for almost two third) with that based on clinical evalua-

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Life Span and Disability Di Nuovo S. / Buono S.

tion. The two evaluations result, especially with respect to correspondence


analysis, largely overlapping, with differences justifying the comparison be-
tween different diagnostic approaches.
The discrepancies regard always adjacent levels, particularly between
Mild MR and BIF at one side, Mild and Moderate MR on the other side.
When the software suggests a diagnosis of BIF while clinical evaluation
proposes Mild MR, a slight influence by the age, and a strong influence by
IQ are shown. I.e., the standardized algorithm pays more attention to the
younger age and to the higher IQ, while clinical evaluation tends to advan-
tage older ages and into taking less in account the IQ, preferring to give im-
portance to other variables, different from those emerging from the psy-
chometric instruments.
Only in this case of discrepancy, the incidence of IQ in determining the
diagnosis appears to differentiate clinical from psychometric approach. We
can infer that the difference between the two modalities of evaluation is
linked not to the IQ (except for the quoted discordance at the very un-
steady border between BIF and Mild MR), but to other elements derived
from adaptive and contextual factors.
In conclusion. the two evaluations, somewhat different although largely
overlapping, show both signs of strength and weakness.
The clinical evaluation can take in to account, in a qualitative way, fac-
tors passing unnoticed unavoidably in the use of psychometric scores: e.g.,
developmental features, role of the context, familiar and environmental
support, emotional and motivational components.
The evaluation based only on the psychometric tests scores (including -
besides intelligence - also the adaptive areas of communication and social-
ization, as requested by the shared diagnostic criteria) has the advantage of
allowing an highly standardized integration of these scores. Therefore it is
undoubtedly an aid for professionals (health service employees, doctors,
psychologists) with less clinical experience or for the (many) cases of diag-
noses that are uncertain or divergent among different evaluators; while the
formal diagnosis has to meet uniformity of criteria, considering its juridical
and rehabilitative consequences, and also for prognostic purposes.
At last, we have to consider that the evaluation made by the software on
the basis of the standardized algorithm is proposed as a diagnostic hypoth-
esis, modifiable by the team on the basis of observational information
and/or other diagnostic instruments. The results of other cognitive tests, as
Raven’s Progressive Matrices (Raven, 1949) or Leiter Scale (Leiter, 1979)
where the subject’s performance could be more efficient, may be taken in-
to account. These scores may be considered alternative to the traditional
IQ, also using the highly standardized conversion criteria supplied by the
software itself.

158
Diagnosis of Intellectual Disability: comparison between clinical criteria and automatized procedures

References
Aa. Vv. (2007). Misure diverse di intelligenza e di adattamento nella diagnosi del
grado di ritardo mentale: un tentativo di sintesi. Ciclo Evolutivo e Disabilità / Life
Span & Disability, 10 (2), 195-214

American Psychiatric Association (2000). Diagnostic Statistic Manual, text revised


(DSM-IV-TR), Washington: A.P.A.

Greenacre, M. J. (1984). Theory and Applications of Correspondence Analysis. Lon-


don: Academic Press.

Leiter, R. G. (1979). Leiter International Performance Scale. Chicago: Stoelting. Re-


vised by G. H. Roid & L. J. Miller, 1997.

Shalock, R. L., & Luckasson, R. (2005). Clinical judgment. Washington, DC: Amer-
ican Association of Mental Retardation.

Luckasson, R., Borthwick-Duffy, S., Buntx, W. H. E., Coulter, D. L., Craig, E. M.,
Reeve, A., Schalock, R. L., Snell, M. E. Spitalnik, D. M. Spreta, S., & Tasse, M. J.
(2002). Mental Retardation: Definition, classification, and system of supports (10th
ed.). Washington, DC: American Association of Mental Retardation.

Raven, J. C. (1949). Guide to using the Coloured Progressive Matrices. Sets A, Ab B.


London: H. K. Lewis.

Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). Vineland Adaptive Behavior
Scales. Circle Pines: American Guidance Service. Tr. it. della Forma completa – In-
tervista, a cura di G. Balboni & L. Pedrabissi, Firenze: O.S., 2003.

W.H.O. (1992). The ICD-10 Classification of mental and behavioural disorders: clin-
ical description and diagnostic guidelines. Geneva: World Health Organization.

Wechsler, D. (1991). Wechsler Intelligence Scale for Children – Third Edition. San
Antonio: The Psychological Corporation, TX.

159
Life Span and Disability / XII, 2 (2009), 161-173

A project of education for health and autonomy of


persons with intellectual disabilities

Raquel Casado Muñoz1 & Fernando Lezcano Barbero2

Abstract

Any educational policy addressed to people with intellectual disabilities


should pursue a main goal: to obtain their greatest possible autonomy. In
this article, we underlined two different points. The first and most impor-
tant one is the ‘functionality’ of contents and activities, which will make
possible the subsequent generalization or practical application of what is
learned in different contexts. The second one refers to an appropriate
methodology, in agreement with the characteristics of the disabled per-
sons’ groups. The Integral Program of the Education for Health, which is
described in this paper, was designed under these premises. The program
was tested in a pilot-study and has been (and still is) the subject of re-
search in Spain as well as in other countries.

Keywords: Intellectual disability, Health education, Autonomy, Educa-


tional program

1. Introduction

For all people the goal of the developmental process is to reach the high-
er level of autonomy in relation to one’s individual capacity and to the lifes-
pan moment; and to the same – even greater – extent, this is especially the
case with persons with intellectual disabilities. Educational support for de-
veloping individual abilities that aid social interaction or obtaining good re-
sults in differing environmental contexts (at home and outside, at school, in

Received: 19 May 2009, Revised: 25 November 2009, Accepted: 25 November 2009

1 Universidad de Burgos, España. Facultad de Humanidades y Educación. Dpto. de Cien-

cias de la Educación - Villadiego - 09001 Burgos (España) - E-mail: rcasado@ubu.es


2
Universidad de Burgos, España. E-mail: flezcano@ubu.es

161
Life Span and Disability Muñoz R. C. / Barbero F. L.

the free time) must be a fundamental value for schools or other education-
al context where people with intellectual disabilities are involved.
The main aims of the American Association on Health and Disability
(AAHD) are to advance health promotion and wellness initiatives for peo-
ple with disabilities (Blankenbaker & Carlin, 2008), and education is fun-
damental for this promotion.
In this article we establish the bases for the creation of didactic material
for young people with intellectual disabilities, and successively we will pre-
sent an Integral Program of Health Education planned for this group. How-
ever, this program could be also adapted for other groups with social learn-
ing difficulties, people affected with psychic diseases, persons with difficul-
ties in social adjustment, and immigrants from other countries.

2. Gaining greater functionality

To realize an adequate planning program with the objective of obtaining


greater autonomy in people with intellectual disabilities, it is necessary to
follow a criteria of ‘functionality’.
In our case, we feel that health education could be the ‘back bone’ of all
the learning contexts, given the enormous versatility of themes addressed
to health problems, and the importance of the objectives and contents deal-
ing with such education, as we shall see below.
To adequately justify this choice, we must adopt an approach associated
with the concept of health defined by W.H.O., since 1946, as a state of com-
plete physical, mental, and social well-being, and not simply as the lack of
illnesses or infirmities. Health in this sense has a clearly integral meaning
for the whole person.
The European Council (l992), referring to people with disabilities, ex-
presses the concept that the aim of health education is to help people with
disabilities develop the capacity to render rational the decisions made
about one’s personal health. This consists of maintaining a healthy style of
life; learning individual and group models that contribute to maintaining
good health; gaining autonomy in decisions pertaining health.
It’s important to know what are the most important aspects of health ed-
ucation.
Casado Muñoz (2001) compared the diverse programs relative to good
health, finding much in common between the themes taken into consider-
ation (table 1).

162
A project of education for health and autonomy of persons with intellectual disabilities

Table 1 - Comparison among different programs of health education. Authors and


fields of the projects
Serrano Junta de Junta de Willgoo se Nieda Dire ction Junta de
González, Castilla y Castilla y (1975) (1992) de Aps, Andalu cía,
(1990) León, 1993 León, 1990 adapted by Burgo s, 1989
Salleras 199 7
(1995)

Community School School Community School School School

1. –Environ - 1. - Illnesses 1. - Cleanliness 1. - Physical 1. - Accident 1. - Health 1. – Environ-


mental Health 2. - Oral and personal activity, sleep Prevention and Perso nal mental
2. - Drug abuse health hygiene relaxation and First Ai d Hygiene healt h
3. - Sex 3. - Mental 2. - Physical 2. - Food, 2. - Road 2. - Physical 2. - Game-
education Health activity and nutrition, Safety Activity and Playing
4. - Foo d 4. - free time growth 3. - Personal Rest 3. - Physical
5. - Men tal Occupational 3. - Growth 3. -Dental Car e, hygi ene , 3. - Gro wth activity
Health health and physical health Health and 4 – Food
5. - Tobacco. developmen t 4. - Prevention 4. - Food development 5. - Hygiene
6. - Physical 4. - Food and and contr ol of Quality 4. - Food and 6 - Sexuality
exercise nutrition illnesses 5. - Drug nu trition 7. - Mental
7. -Dru gs 5. - Health 5. -Prevention addictio n 5. - Health
and Alcohol. prevention and Security prevention Preventi on 8. - Accident
8. - and control from accidents 6. Prevention and Control Prevention
Reside nce 6. - S ecurity on-Job and Control of of Illness 9. - Drugs
and cul tural 7. -Sexual 6. -M ental Illness 6. - Securi ty
Cen ter. health health 7. - Human and Early
9. - Food and 8. - 7. -Alcoh ol, Relation s, Preventi on
nu trition Environmental tobacco, drugs Mental health, 7. - Mental
Health 8. - Education Emotionality and
9. - Drug on family life and S exuality Emotional
Prevention and sexuality 8. - Health health
information 9. - Services and 8. - Sexual
Environmental Emergency Health
health Services 9. - Health
10. -Correct 9. - and
Public Health Environmental Environment
Policy Health 10. - Drugs,
Education Alcohol ,
Tob acco
11. – Acci-
dent
Preventi on
12 - Postural
Hygiene

The table 2 outlines relationships between themes regarding health, and


adaptive skills of people with intellectual disabilities; the aim is to compare
the areas of competence as proposed by the American Association on Men-
tal Retardation (2002).

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Life Span and Disability Muñoz R. C. / Barbero F. L.

Table 2 - Relation between areas and contents of adaptive competencies and basic
themes related to health: Source: Casado Muñoz (1999, 2001)
Areas of Adaptive Contents of th e areas Basic themes
Competence and related competencies related to health
Communication Comprehension and All themes, especially
expression of messages mental hea lth
Food and n utriti on,
Food and nutrition, hygiene illness
Personal Care
hygiene prevention
Sexual health
Food and nutriti on
Food, hygiene, security,
Home life accident prevention
social interaction, etc.
Mental hea lth

Socia l behavior: friendship, Mental hea lth


Social skills interpersonal re lations, Drugs
social participati on, etc. Sexual Health
Mental hea lth
Trips, shopping, medical
Food and nutriti on
Community assistance, socia l
Security
interaction, etc.
Environmental health
Decision making, asking
Mental hea lth
Self-di re ction for help, problem solving,
illness prevention
assertiveness
Diet, prevention, Food and nutriti on
treatment of illness, first illness prevention
Health and security
aid, sexuality, physical Sexual health
fitness Security

Cognitive competencies: All basic themes about


Functional acade mic
reading, writing, basic health
compete ncies
functional co ncepts

Rest, choice and


particip ation in activitie s,
Mental Health
Use of free time home and community
Drugs
entertainment, socia l
interaction.
Work ability, appropriate
social behavior, Security
Work
interpersonal re lations Mental Health
money management

164
A project of education for health and autonomy of persons with intellectual disabilities

3. Methodology

To deal with methodological aspects that give direction to and guide the
process of elaborating guidelines for educational materials, we will follow
some basic principles (De La Fuente Fernández, 1999):
- Individualization: Students’ different work rhythms and rates of learn-
ing have to be respected. In the same way, the process of learning must
be gradual and sequential. We must encourage approaches that im-
prove a student’s self-esteem.
- Globalization and integration: Content integration must be reinforced;
placing in sequence learning processes to reach objectives more easily,
avoiding fragmentation that inhibits a unified learning process.
- Functionality: Learning must be directly related to aspects of daily life.
- Comprehensiveness: All students must adhere to learning processes
considered fundamental for intellectual development and improved
socialization.
- Diversity: Respect for differences in interests, motivations and capaci-
ties of each student.
- Cooperative work: Both students and teachers must work together to
achieve practically useful results of education.

4. Approaches to gender variable

Another question to which special attention must be focused concerns


“gender treatment”, in consideration of the greater vulnerability of women
with intellectual disabilities. Both in text as in the images and activities, it is
fundamental to treat with adequate attention gender differences, strength-
ening male-female equality and avoiding roles and attitudes that can nega-
tively influence students.
Therefore we think it is useful to present images of young people work-
ing in non sexist roles, avoiding exclusively feminine traditional roles, and
presenting situations that permit identifying the woman’s role in a context
that overcomes their past exclusion from various professional activities
(Casado Muñoz, 2005).
On the other hand, also for men, images and activities have to be pre-
sented avoiding the stereotyped divisions of roles traditionally separating
them from women: for instance, home-making, bringing up children, nurs-
ing old people, has not been considered a “male role”. These proposals
must complete a social integration that avoids the traditional prototypes,
now in a phase of transformation.
Also the inclusion of images and activities that can highlight the in-
equalities existing in various occasions will offer students issues for debate
and search for alternatives promoting equality between gender roles.

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Life Span and Disability Muñoz R. C. / Barbero F. L.

5. Evaluation: involving all educators

Evaluation is a fundamental process as part of any educational policy,


and, though teachers play a fundamental role in this (Ruiz, l999), we must
include other sources of information, which can be:
- Participating students, who have evaluated the contents and activities,
offering proposals for improvement.
- Parents who also play an important role, since they better know how to
apply in a family context the learning already initiated in an appropri-
ate institution.
- Professional advisors can assure - in the same way as parents - accurate
means of observing the progress or lack of in a context outside home.
Unifying this input from all participants, and the subjects themselves, for
this analysis will greatly aid in formulating programming of learning and
gradually modifying the program itself, to adapt it to the needs of the par-
ticipants (and not students needing to adapt to proposals).

6. Integral Program for Health Education - Work Proposal

We present a synthesis of the Integral Program for Health (Casado


Muñoz & Lezcano Barbero, 2006) that meets the requirements set forth.
The educational material we propose aims to be inclusive, open, and flex-
ible, subject to any modifications or variations that educators believe valid
for adapting to individual characteristics or groups of persons with intellec-
tual disabilities whether young people or adults, and in differing contexts.
In a particular way, the “environment” is particularly important when
applied in a different country from where it was first validated, since differ-
ent customs, health factors correlated with climate, food, etc. should be an-
alyzed and taken into account before the application of the program.
The educational materials are conceived to be utilized in a classroom
(limited time for assistance, specific space needed, etc.). At the same time
we consider it of fundamental importance to include and create stages in
particular areas of social interchange (city Centers, residence areas, home)
that serve to connect classroom with life, to increase learning opportunities,
and to apply in everyday life what one has learned from these experiences.
From all these reasons, we have tried to create some versatile educa-
tional materials with many different activities and supports such as sched-
ules, music, videocassettes, etc. We follow O’Neill’s (1980) recommenda-
tions regarding the simultaneous utilization of many informative and edu-
cational strategies from different sources, and the same author’s conclu-
sions about the success of health education programs because of their long
duration, in which the educative messages have been oriented through di-
verse means, with active participation of students.

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A project of education for health and autonomy of persons with intellectual disabilities

A basic premise is the fact that the contents - that is, the illustrations that
accompany the text - must take into account students’ age. It is also impor-
tant to work with colored materials. For this reason, the program has more
than 500 original color designs in the schedules suitable for student’s work.
To summarize, we have tried to plan some didactic materials adapted to
the needs and interests of young people with learning difficulties; materials
that deal with practical realities of daily life with the greatest possible sim-
plicity; educational resources where the scarce or null reading-writing abil-
ities are not an obstacle in following the student’s formative path, and
where students (who think, feel, experiment, comment...) are principal and
active participants in all aspects of the whole program.

6.1 Program Objectives


The following general aims are outlined:
- Contribute to develop students’ personal autonomy.
- Learn basic concepts for a healthy life.
- Discover, develop, positively evaluate models of both individual and
group healthy life.
- Get students able to decision making in relation to daily activities, and
to improve environmental factors that concerns not only their own
health but also that of other people.
- Learn to understand and develop resources to avoid risk situations.
- Teach students how to search for adequate help in different risk situa-
tions.

6.2 Structure
The program is composed of 8 didactic units: Food and Nutrition, Per-
sonal Hygiene, Injury Prevention, Drugs, Environmental health, Mental
health, Prevention of Illness, Sexual Health, in the following format:
- A pamphlet including health questionnaire to determine student’s ini-
tial level.
- A CD with didactic material including all units.
Each Didactic Unit consists of a “Teacher Manual” and work schedules.
The Teacher Manual is subdivided into the following parts:
- Introduction.
- Relation to other program issues, to introduce teacher to aspects in
common between each Didactic Unit and the others.
- Educational objectives, planned for the Didactic Unit.
- Contents: summary of the elements contained in the Unit: concepts,
comparisons, thinking, procedures, attitudes.
- Activities report: organizing a group of activities that the teacher can
directly integrate or adapt according to student’s characteristics. Their
development can be mainly achieved through oral communication,
since this form of communication permits students to analyze and

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Life Span and Disability Muñoz R. C. / Barbero F. L.

deepen understanding more easily. But also activities related with read-
ing writing and computing are implemented.

6.3 Types of Activities


- analysis of information from work schedule
- case studies
- group debates
- role-playing
- couple diagnosis and presentation of results to the group
- personal daily activity growth
- elaboration of maps, illustrative cards, slides, etc.
- distribution of information for special places in the Center
- creation of didactic objects according to the proposal of the work sched-
ules
- interviews with people who can offer relevant information on themes
under attention
- making inquiries, questionnaires
- visiting points of reference
- making experiments
- didactic materials for teachers for widening range of contents in each
unity
- materials for parents and tutors, presented in simple format, offering
parents more opportunities for involvement in students growth
through daily activities at home
- materials for evaluation to facilitate parents’, tutors’, students’ and
teachers’ participation
- activity summary: helps teachers gain a global view of program, adding
or subtracting activities and work-plans according to specific needs of
group
- bibliography: an important reference for increasing information
sources

6.4 Work Schedules


These documents contain open and flexible proposals in a simplified
form similar to that of the Teacher Manual. They consist of material each
student will receive at the beginning of each Unit. The schedules are suit-
able for individuals, though other have been planned for group work.

6.5 Music
Music is a relevant aid for strengthening motivation, an excellent tech-
nique for improving expression and positive dynamics (Serrano Gonzàlez,
l998). Our students have welcomed it.
If, as we have previously said, it is important to adapt materials taking in-
to account different countries and cultures, in music this becomes funda-

168
A project of education for health and autonomy of persons with intellectual disabilities

mental for showing that simply transferring a musical piece from one coun-
try to another does not have the same educative result.
Once our program has been planned with the characteristics we have
described, it is essential that it get applied and evaluated. In the following
section we will indicate the procedure followed for validation of the pro-
gram, and the results obtained.

7. Program validation: a pilot study

7.1 Working hypothesis


According to our hypothesis, the students who are participating in the
Program will improve their knowledge and learning aptitudes, as well as
their daily life behavior in greater measure than those who participated in
a traditional formation program, in the same Center.
To attempt to confirm this hypothesis, we have programmed a quasi-ex-
perimental research project, so defined because the sample is necessarily
not randomized, and experimental and control groups are not equivalent,
based on planned selection and attribution to groups; participants to the
formation program were selected according to variables such as age and
suitability for the program itself.
The hypothesis is that differences exist in the treatment (experimental
group) compared with activities normally planned in the Center for Occu-
pation Formation (control group).
Table 3 shows the research project outline planned to test the hypothesis.

Table 3 - Research Project Outline


Measure
Group Composition Treatment Measure aft er
before
treatment
treatment

Experimental Incidental Yes Experimental Yes


Program

Control Incidental Yes Normal formative Yes


program at Center

7.2 Measures
As measurement instrument we used the Health Questionnaire devel-
oped and validated by Casado Muñoz in 1994, whose reliability was verified
finding in particular an high Cronbach’s alpha coefficient (0.92) (Casado
Muñoz & Lezcano Barbero, 2006). The Questionnaire was previously vali-

169
Life Span and Disability Muñoz R. C. / Barbero F. L.

dated by submitting to a sample of 124 subjects that comprised 86% of


young people who attend the First Social Guarantee Program for students
with special educative needs, conducted in Spain.
Methods and techniques of qualitative research has been also adopted,
such as systematic observation by parents and teachers, along with group
interviews of professional experts, parents and students.

7.3 Sample
The experimental pilot group, for the preliminary evaluation of the Pro-
gram, was composed of 9 participants to a Social Guarantee Program as stu-
dents with special educative needs.
The control group was composed of the same number of age-matched
students of an Occupational Formation Course.
The age range was 16 - 20 in the experimental group (mean age 18.0), 20
- 24 in the control group (mean age 21.9).
The small number of participants in the sample was due to a policy of
adopting in the Program group classes of between 8-10 students.
To avoid spurious influences and to enhance the reliability of the re-
search process, the two groups were selected from the same center: in our
case the “El Arca” Center that belongs to the “Asprodes” Center of Sala-
manca (Spain), that works with young people with intellective disabilities
over the age of 16.

7.4 Educational Intervention


The Program was carried out over 18 months, within the curriculum of
the Basic Formation (10 hours a week during the first course; 6 hours a week
in the second course), offering also an interdisciplinary program for selected
aspects particularly appropriate for the Area of Specific Professional For-
mation (security and prevention of accidents in the work place); the Area of
Tutoring (communication and interpersonal relations) or in the educational
component for Complementary Activities (healthy pastimes, etc.)
The implementation of the program was accomplished by well-trained
teachers from the Occupation Center, attempting to get experience in a
natural educative context.

7.5 Results
To verify if the changes in each of the two groups were statistically sig-
nificant or not, the pre-post differences have been analyzed by means of
paired samples t-test. We considered the variations obtained through the
application of the Health Questionnaire in each of the dependent variables
(didactic unities) at the beginning and end of the experience for each of the
two groups.
The analysis was performed using the statistical package SPSS.
Results have shown in the experimental group a significant pre-post dif-

170
A project of education for health and autonomy of persons with intellectual disabilities

ference (p<.05) in the following variables: Nutrition, Health Prevention,


Sexual health, Mental health, Drugs, Environmental Health, and Global
Score on the Health Questionnaire.
This same group did not show significant change in the variables: Per-
sonal Hygiene and Health Prevention. At the same time we observed,
through other qualitative methods of assessment, that the evolution of the
experimental group was very positive even in these two variables although
the quantitative differences did not reach the critical limit for statistical sig-
nificance, due to the small number of subjects in the group.
On the contrary in the control group there were no significant differ-
ences (p>.05) either in the single variables nor in the Global Score of the
Health Questionnaire.
Besides this, through information obtained by means of the already quot-
ed qualitative instruments, such us clinical observation and semi-structured
group interviews for parents and professional experts, we tried to test the
generalization of reinforced learning processes and behavior characteristics.
Both professionals involved in the development of the program and par-
ents have confirmed the positive evolution of students from the experi-
mental group, while in the control group the changes were less visible.
This improvement in subject’s behavior has been mainly associated
with: personal hygiene, conforming to rules, cleanliness, correct observance
of road safety norms, improvement in social relations, request for greater
independence, less consumption of alcoholic beverages.

8. Conclusions

We believe we have satisfactorily reached, through the pilot research


project discussed above, the objectives set-forth for students participating
in the program:
- Students greatly improved their conceptual and procedural under-
standing in all variables studied, with particular significance in 7 out of
9 areas investigated. The less significant results of the other two areas –
i.e., hygiene and health prevention – are contrasting with the positive
evaluations of parents and experts.
- Students improved daily behavior connected to hygiene, road safety, al-
cohol consumption.
- Students have shown greater interest and motivation in working with
Program didactic materials, and have generalized their learning to oth-
er contexts and situation.
In addition, parents and experts have positively appreciated the Pro-
gram, considering it innovative, adequately prepared and organized with
materials capable of attracting the attention of students and enforcing their
motivation.The students themselves have appreciated it.

171
Life Span and Disability Muñoz R. C. / Barbero F. L.

The encouraging results obtained from this pilot-research have con-


firmed our hypothesis of its validity and given us the motivation to contin-
ue forward along the promotion of health education for people with intel-
lectual disabilities, emphasizing the need to develop suitable didactic mate-
rials for these subjects and stimulate interest among experts who work in
this area. In the same way, we hope that the program strategies, if correctly
adapted, can help people with intellectual disabilities in other countries.
We are presently verifying if the acceptance of these didactic materials
for young people and adults with intellectual disabilities can be generalized
and opened-up to include applications in other sectors and contexts (Casa-
do Muñoz, 2005; Casado Muñoz & Lezcano Barbero, 2006). At the present,
considering that the research initiated and carried-out in Spain for Program
evaluation confirms the excellent results for enhancing disabled student’s
learning capacity and responsibility, we are trying to adapt the Program to
people affected with Autism, pursuing new opportunities for these persons
in our country and others, for instance Argentina.

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173
Life Span and Disability / XII, 2 (2009), 175-185

Caring professions in multi-ethnic society: differences and


similarities in representations of Health and Illness

Patrizia Velotti 1 & Giulio Cesare Zavattini 2

Abstract

This article reviews studies that compare different groups (about culture,
national, racial) in order to propose a summary of results about the role
played by caregivers’ cultural influences in the management of patients.
The paper, after a brief introduction, illustrates the research conducted
about mental representations concerning the body, health, illness and
practices of care. The focus, finally, is on recent studies about caring pro-
fessions. The Authors also indicate future lines of research.

Keywords: Health, Illness, Caring Professions.

In all times and in all places,


it has been the man who has knew how to make his own body
a product of proper techniques and representations
(Lévi-Strauss, 1950, p. LVIII)

1. Introduction

The demographic changes of recent decades have increased the knowl-


edge of other populations, environments and customs, highlighting the need
to examine through cross-cultural studies the influences that these factors
have on subjects that live in different contexts, rather than those belonging
(Fortier, & Bishop, 2003). This new area of research could give us more in-
formation in order to understand individual behavior related to issues such

Received: 13 November 2008, Revised: 12 October 2009, Accepted: 25 November 2009.

1 University of Rome “Sapienza”, e-mail patrizia.velotti@uniroma1.it


2
University of Rome “Sapienza”, e-mail: giuliocesare.zavattini@uniroma1.it

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as health, illness, cure practices. In the meantime, it could produce results


that encourage the development of intervention programs in which inter-
cultural attention is focused on “opportunities for dialogue within the ex-
isting diversity” (Sordano, 2007; Rüdell, & Diefenbach, 2008).
Specifically, in Europe the presence of migrant workers in many health
services, public and private, make this topic more relevant (Aranda, &
Knight, 1997). Research results have emphasized the necessity to examine
the increasing effects of ethnic diversity, in order to realize the migrant’s
ability to use public services, and to explore the opportunity that these new
“shared” cure contexts provide for sharing and exchange (Valle, 1998;
Janevic, & Connell, 2001; Zavattini, Pace, & Velotti, 2008).
Already, the social sciences have fully documented the role of social
learning in regard to behavior concerning the body (Kiviniemi, & Rothman,
2008). “When the eyes of a sociologist, of an ethnologist, and of a historian
of ideas or of medicine, examines the representations underlining habits of
hygiene, food and sex, techniques of farming or livelihood in the form of
scientific knowledge and common sense, his way of moving forward joins
that of the psycho-sociologist. These representations are regarded in the
same way as the psycho-sociologist view them: as latent models, referring to
common systems of thoughts and values, and to ensuring the consistency of
attitudes and behavior within a given social system” (Jodelet, 1989, p. 244).
The study of social representations’ is been for many years a rich field of
psychological research (Moscovici, 1961, Petrillo, 1994, 1996), in which the
research has helped to highlight the presence of differences in the different
cultural representations. Particularly, in relation to the way of conceiving
body, health, illness and the behavior associated with them (Herzlich, 1983;
Sheikh, & Furnham, 2000; Ford, & Kelly, 2005). “What is the meaning of
health and illness to us? What for an individual in our society? From each
ones personal experience, but also through the information that circulates
in our society, shaped by its own values, the images are structured: being
sick, being healthy, are images that are primarily created by an individual,
that cannot be shared” (Herzlich, 1973).
Moscovici (1961) in his research on the spread of psychoanalysis in
French society highlighted how, when a theory is part of common sense,
there is a selection of some concepts, as extracted from the original theo-
retical corpus, which are restated taking into account the existing and fa-
miliar knowledge. Overall, studies conduct in this area tried to identify the
specific representations relating to concepts of health and illness and also to
the diversity in the different social groups. “What we try to find out is how
the relationship, socially regulated, with this specific social object - the body
- is conveyed and is organized in terms of experiences perceptions, knowl-
edge and normative statements” (Jodelet, 1989).

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2. Health and Illness: old and new lines of research

Over the last thirty years, the representations of health and illness have
been the topic of several studies; following the papers of Moscovici
(1961/1976) on the different representations of psychoanalysis in the vari-
ous social groups, new research had explored how the existing knowledge
systems could change (Flick, 1998). Herzlich (1973), in the French context,
identified three different conceptions of health and illness that have stimu-
lated further investigation. Jodelet (1991) analyzed the existence of a link
between the representation of mental illness and behavior towards patients
in a small French village; he showed how a naive theory (fear of contagion,
proximity, etc.) of mental illness constituted the key point of the social rep-
resentation of illness and explained the behavior implemented by the vil-
lagers who did not seek integration with the patients. Research has also
documented how changes in these representations determine modifications
in subjects’ behavior.
These early works are followed both by studies on the social representa-
tion of the disease - which focused on a variety of illness - and by studies on
health that, on the basis of the work of Herzlich (Herzlich, & Graham,
1973), have attempted to identify different conceptions belonging to differ-
ent cultures. Flick (2000) found different representations in samples of Ger-
man and Portuguese women and in samples of professional nurses of East
and West Germany and he has connected the differences observed to the
dissimilar contexts where the subjects belonged.
In other studies the focus of these investigations - that have identified a
direct or indirect involvement of specific factors on individuals’ behaviors –
regarded topics such as how to ask for help, the medical services availabili-
ty, the compliance of patients, the correct behavior related to health, etc.;
and results showed that aspects such as socio-demographic characteristics,
social and cultural factors, seems to be related to health- behaviors imple-
mented by the people (Radley, & Billig, 1996; Galli, 1998; Jovchelovitch, &
Gervais, 1999; Fasanelli, Galli, & Sommella, 2005, Dixit, Mishra, & Sharma,
2008). These data have subsequently oriented scholars to develop appro-
priate programs of intervention.
Each study has attempted to examine how the possible differences be-
tween individuals are related to the different cultures and how recent
changes in cross-culture might give reason for the variations in health sta-
tus and for the modifications in the subjects’ care behavior (Fox, Hinton, &
Levkoff, 1999). At the same time, it showed that the diseases’ representa-
tions also have strong implications in the type of answers that people, in
general, give to patients (Barrowclough, Lobban, & Hatton, Quinn, 2001).
Among the theories most used there is the self-regulation model of Lev-
enthal (Leventhal, & Diefenbach, 1991; Leventhal, Musumeci, & Contrada,
2007) for which the answer of subjects to the disease is considered the re-

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sult of a process through which each individual integrates – in the cognitive


structures that give meaning to the experience – the internal and external
stimuli with the preexisting information.

3. Caring professions: an area of particular interest.

Understanding how people in general, and health care workers particu-


larly, explain the factors that determine health and disease is particularly in-
teresting for the promotion of public health. If people that work in health
care structures or individuals who use these structures do not have the
same opinion about the assumptions of the medical practice – i.e., if they do
not believe that smoking is injurious to health – there is little possibility
that these people can persuade or could are persuaded to adopt the
lifestyles suggested. Referring to Leininger’s trans-cultural model of nurs-
ing (Leininger, 1991; Leininger, & McFarland, 2002), recent works confirm
the need for physicians to understand the perceptions of illness of patients,
in order to provide health care services that are consistent with the norms
and values of the patient’s culture. This model considers the concept of cul-
tural competence, which requires that doctors should be aware of specific
cultural values, traditions, beliefs and health of their patients (Mahoney,
Cloutterbuck, Neary, & Zhan, 2005).
The quantity and quality of care provided by public services to their cus-
tomers have been evaluated in several studies, comparing the ability of pro-
fessionals to keep costs within budget by a rational, efficient and complete
number of “correct” performances (Lawton, Rajagopal, Brody, & Kleban,
1992; Connell &, Gibson, 1997); at the same time, is widely acknowledged
the role played by ethnic and cultural differences of the “caregiver” and the
“patient” in the treatment (Barrett, 2001).
In fact, focusing on the role of ethnic differences with respect to the abil-
ity to access and quality of care received in health services (Geiger, 2003;
Hannum Rose, Bowman, O’Toole, Abbott, Love, Thomas, & Dawson, 2007),
many studies have investigated: 1) the ways in which institutions, in turn,
tend to exclude minorities from the services and resources (Wallace, & Wal-
lace, 1998); 2) the way in which various ethnic groups are at risk of discrim-
ination and exclusion from public services; or finally; 3) the way in which
specific cultural identities reinforce or protect their members from the dis-
ease (Shadlin, & Larson, 1999; Sondik, Lucas, Madans, & Smith, 2000; Tang,
Cross, Andrews, Jacobs, Small, Bell et al., 2001).
On the other hands, there are fewer studies concerning the different at-
titudes, beliefs and values in the ethnic groups and examining the role of
these in facilitating or limiting the quality of care provided. For example,
Bruce et colleagues showed that the patient ability’ to understand non-ver-
bal communications of and his/her emotional expressions is greater when

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Caring professions in multi-ethnic society

there is a “congruence” between the different cultures (patient and practi-


tioner) compared to when this congruence is not present (Bruce, Beard,
Tedford, Harmon, & Tedford, 1997).
In literature many studies were focused on non-professional care pro-
vided by family members of patients or volunteers (Sokolovsky, 1990; Fox
et al., 1999; Navaie-Waliser, Feldman, Gould, Levine, & Kuerbis, Donelan,
2001; Pinquart, & Sörensen, 2005; Li & Fries, 2005; Wallhagen & Yamamoto-
Mitani, 2006; White-Means, & Rubin, 2008; Yaffe, Orzeck, & Barylak, 2008,
Wells, Cagle, Bradley, & Barnes, 2008) regard to specific diseases (dementia,
mental illness, AIDS, etc.). These works, mainly focused on the differences
between whites and blacks, have come to identify several explanations of
the “racial” differences in the quantity and quality of care provided to pa-
tients. Miller and his colleagues (Miller, Campbell, Farran, Kaufman, &
Davis, 1995) have reported lower levels of stress in African-Americans
caregivers compared to whites and, considering the amount of variance not
explained by other factors (socio-economic levels, resources, etc.) they
concluded that the Afro-Americans seem to perceive the task of caregivers
as less stressful because they are accustomed to harsh living conditions.
Gaines (1995) has attributed to the “Mediterranean” culture a different
role in ‘reading’ the disease and providing care; in this tradition, in fact,
there would be less emphasis on the intellectual aspects rather than emo-
tional ones that have an effect on care. The author has tried to go beyond
the dualism white / black considering some features as typically of all the
Southern cultures, in which there are whites and blacks. Ikels (2002), in a
cross-cultural study has reported that dementia, as a disease, is perceived as
psychologically less threatening in China than in U.S.; in fact, the Chinese
context seems to maintain longer a sense of self-esteem of patients and at
the same time it seems offer more awards to families who care for them.

4. Conclusions

Therefore, understand how different ethnic groups mean “the care” is


now a problem of great interest (Dilworth-Anderson, Williams, & Gibson,
2002). The various existing gaps in research need to be overcome. They
could determine confusion between different aspects (i.e., cultural versus
social) or generalizations between different migration situations (neo-mi-
grants versus old-migrants), finally, they could underestimate aspects such
as religion or gender. In the meta-analysis of Pinquart et al., (2005) the au-
thors concluded that the lack of a theoretical model on the predominant
role played by ethnic differences in caregiving is problematic and must be
overcome through research targeted to specific population samples in or-
der to identify similarities and differences with respect to a wide range of
variables.

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Life Span and Disability Velotti P. / Zavattini G. C.

The literature has, in fact, emphasized that in the ‘care relationship’ fur-
ther aspects of the caregiver personality are involved, such as empathy, ac-
ceptance, warmth, willingness to learn and to understand the different cul-
tures, etc; these aspects – such as “cultural congruence” – seem to have a role
in the formation of the relationship of care (Proctor & Davis, 1994; Balk,
1997; Burman, 1999). In the first exploratory phase, research (Stephenson,
2000) analyzing different variables (nationality, place of birth, race, region of
residence, history of migration, language membership, years lived in the new
country, religion, occupation, etc), with the purpose of understanding the dif-
ferences in the ways of perceiving and/or in the behavior of individuals.
Thus, to assess the effect of “culture” in the jobs related to health.
Finally, emerges in literature, the necessity of greater awareness of di-
versity within groups of different populations. For example, samples that
are generally classified in research as “Latin”, really includes people from
different places of origin such as Central America, Caribbean, Spain.
(Aranda & Knight, 1997; Connell & Gibson, 1997; Delgado & Tennstedt,
1997; Gallagher-Thompson, 2000; Morano & Bravo, 2002). In the future, on-
ly a greater characterization of the target population on respect to the
country of origin, residence (urban or rural area), period of migration will
allow more detailed conclusions.
Now, the challenge is to integrate this knowledge in appropriate theo-
retical models that take into account the cultural changes resulting from
migration and also the constant ‘contact’ of the individuals (healthcare
workers and patients) to different models than their own.

Acknowledgment

The study was funded by Italian Ministry of Research, PRIN 2006, Re-
search Unit, coordinated by Prof. Zavattini (University of Rome – ‘La
Sapienza’).

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