diagnosis - child - school - disability
diagnóstico - criança - escola - deficiência
In developed countries, the identification of neurodevelopmental disorders for health
interventions, education and psychosocial management is usually done with periodic
population screening[1],[2],[3]. This not only allows the prevalence rates of these disorders to be established,
but also helps to clarify genetic and environmental risk factors and, consequently,
influence the development of public health and education policies.
In Brazil, the National Policy for Inclusive Education began to be outlined at the
beginning of 2000. A government decree, 6571/2008, was issued giving legal support
to the policy. The decree has been amended over time, with changes being made to regulations,
technical notes and resolutions. The latest document outlining all the policy details
is called, “Guidelines for the Implementation of Special Education Policy in Relation
to Inclusive Education” published by the Ministry of Education. Currently, there are
seven conditions supported by this policy: intellectual, visual, hearing, physical,
multiple disabilities/impairment and autism spectrum disorders, and high skills[4]. To be entitled to an education plan specifically structured to their needs, students
with special educational needs (SEN) have to be given a diagnosis. However, there
are few studies that verify the reliability of the diagnoses of SEN students in Brazil.
In addition, Brazilian studies that map the diagnosis, and characterize and describe
the educational and health service usage profiles of SEN students are even scarcer.
In any area of health, reliable diagnostics are essential to guide treatment recommendations,
identify prevalence rates, and plan educational and mental health service provision[5]. In the specific case of special educational support services, a reliable diagnosis
has several advantages for the child or adolescent affected, their families and for
the broader society. For example, for an educator it would allow them to develop educational
and pedagogical action plans tailored to the typical characteristics of the disorder
and to the specificities of the students’ to cognitive functioning, behavioral patterns,
learning skills and social and adaptive functioning[6]. With regard to the law, a correct and trustworthy diagnosis allows the family and
the community to guarantee the rights protected by the current legislation[5],[7].
Diagnostic evaluation of a given population should be done through periodic monitoring,
helping to identify vulnerable cases and thus increasing the chances of individuals
receiving appropriate treatment according to their needs[8]. Neurodevelopment disorders during childhood need to be monitored from an early
age to deliver interventions in line with development indicators.
Taking into account the importance and scarcity of population data on Brazilian students
with SEN, this study aimed to examine their diagnostic status, and socio-demographic
and health profiles in a public school system.
METHODS
Participants
The study sample was based on secondary data from a database produced by the Municipal
Secretariat for the Rights of People with Disabilities from a public educational system.
This database was designed to record and characterize all SEN students in the city’s
public schools, including kindergarten, elementary schools (stages I and II) and special
education schools. The database contains the following indicators for SEN students:
diagnostic reports, sociodemographic and socioeconomic indicators, school unit and
use of educational, social and health services.
The study sample comprised the 1,202 SEN students recorded in the database who attended
public schools, from a total of 59,344 students. However, only 792 of the 1,202 students
had an established diagnosis. The average age of these 792 SEN students was 13 years
old (SD = 6.59), 500 were male (63.1%).
Table 1 shows the sample data according to sex, age range, distribution by educational
levels and indicators of medication profile and use of educational support services
and social indicators.
RESULTS
In order to present up-to-date data, the diagnostic reports of the 792 students were
grouped according with the SEN categories as defined by Brazilian law[9]. We verified that 13.3% of the disorders were not part of this SEN categories but
were classified as specific learning disorders and psychiatric disorders according
to 5th edition of the Diagnostic and Statistical Manual of Mental Disorders. Two specialists
in developmental disorders made this grouping jointly.
From the diagnostic reports, it was possible to create six qualifying groups: (1)
intellectual disability, comprising genetic syndromes and other conditions associated
with intellectual disability; (2) sensory impairment, comprising visual impairment,
hearing impairment, multiple sensory disabilities without intellectual disability
or autism spectrum disorder; (3) physical disability, comprising cerebral paralysis,
localized paralysis, non-progressive chronic encephalopathy without intellectual disability,
isolated physical defects not related to the central nervous system or intellectual
disability; (4) autism spectrum disorder, comprising global disorder/pervasive developmental
disorder and Asperger’s; (5) specific learning disorders, comprising dyslexia, dyscalculia
or learning disorders; (6) other psychiatric disorders, comprising depression, anxiety,
schizophrenia, disruptive behavior, impulse control and conduct disorders, and attention
deficit/hyperactivity (Table 2).
DISCUSSION
It is notable, in [Table 1] that a large proportion of SEN students show school delay, since 29.4% should have
completed elementary school by 14 years of age. Benefits offered by the government
can be used as indicators of poverty. In this study, 36% of families received food
aid and 19.6% received a family allowance. Currently, approximately 25% of all Brazilian
families receive a family allowance, with the highest concentration in the north-east[10]. As only those with per capita incomes of less than R$70 receive a family allowance,
one can conclude that almost one in five students in this research are below the poverty
line. Recent studies have pointed to the significant benefits of the family allowance
program with regard to various aspects of child health, such as more frequent attendance
of children at primary health care units to monitor development and for vaccination,
as well as decreased mortality of children under five years of age as a result of
poverty[11],[12]. There are no specific data on the benefits of a family allowance for people with
SEN, but a plausible hypothesis is that these children and adolescents are benefiting
equally or even more than typical ones, as poverty adds to the particular challenges
of disability or chronic health problems.
Table 1
Characteristics of special educational needs students in a public educational system:
sociodemographic profile, schooling, diagnosis and use of services (N = 792).
|
Characteristics
|
Total Sample N (%)
|
|
Sex
|
Female
|
292 (36.9)
|
|
|
Male
|
500 (63.1)
|
|
Age range
|
0 - 3 years
|
14 (1.2)
|
|
|
4 - 5 years
|
63 (5.2)
|
|
|
6 - 10 years
|
379 (31.5)
|
|
|
11 - 14 years
|
393 (32.7)
|
|
|
≥15 years
|
353 (29.4)
|
|
Use of medication
|
Yes
|
347 (43.8)
|
|
|
No
|
383 (48.4)
|
|
|
No information
|
62 (7.8)
|
|
School type
|
Day-care nursery
|
12 (1.5)
|
|
|
Kindergarten
|
58 (7.3)
|
|
|
Elementary school
|
563 (71.1)
|
|
|
Special education school
|
159 (20.1)
|
|
Specialized education support service
|
Yes
|
233 (29.4)
|
|
|
No
|
526 (66.4)
|
|
|
No information
|
33 (4.2)
|
|
Family allowance
|
Yes
|
155 (19.6)
|
|
|
No
|
584 (73.7)
|
|
|
No information
|
53 (6.7)
|
|
Food aid
|
Yes
|
285 (36.0)
|
|
|
No
|
457 (57.7)
|
|
|
No information
|
50 (6.3)
|
|
Wheelchair user
|
Yes
|
50 (6.3)
|
|
|
No
|
711 (89.8)
|
|
|
No information
|
31 (3.9)
|
|
Adapted transport
|
Yes
|
24 (3.0)
|
|
|
No
|
713 (90.0)
|
|
|
No information
|
55 (6.9)
|
|
Use of diaper
|
Yes
|
100 (12.6)
|
|
|
No
|
670 (84.6)
|
|
|
No information
|
22 (2.8)
|
Our data shows in [Table 2] that intellectual disability is the most frequent SEN condition in the studied public
schools, followed by sensory disabilities, physical disability, psychiatric disorders,
autism spectrum disorder and, finally, specific learning disorders. Considering the
proportion of students with SEN in relation to the total number of students enrolled
in the schools, it is possible to conclude that there is underdiagnosis of SEN cases,
and consequently under-reporting of these cases to the education department. Taking
autism spectrum disorder as an example, where the estimated prevalence is between
0.6 and 1%[13],[14], in this study only 0.05% of students were classified with this diagnosis.
Table 2
Regrouped diagnosis of records of students with special education needs (N = 792).
|
Diagnosis
|
n (%)
|
|
Intellectual Disability
|
410 (51.8)
|
|
Sensory Impairment (Visual/Hearing/Multi)
|
125 (15.8)
|
|
Physical Disability
|
124 (15.7)
|
|
Autism Spectrum Disorder
|
28 (3.5)
|
|
Specific Learning Disability
|
14 (1.8)
|
|
Other Psychiatric Disorder
|
91 (11.5)
|
The under-reporting of autism spectrum disorder found in our study (Table 2) makes
us reflect on two problems: firstly, the probable negative effects arising from a
lack of a diagnosis on development and behavior, as evidence-based practice recommends
early intervention in autism spectrum disorder[15],[16],[17] and secondly, that undiagnosed children are not receiving any specialized educational
support. This creates a mismatch between the actual situation and the records of diagnostic
reports that have been used in studies in Brazil, with examples of flawed or incomplete
records or, in some cases, missing records[18]. Furthermore, when a child is enrolled in a regular school, the educational team
may develop teaching methods that are not focussed on the needs of these students,
accentuating learning difficulties and prejudicing social adaptation in general[6]. Curricular adaptations and appropriate management strategies are essential to support
learning in autism spectrum disorder students. Evidence shows that most of them cannot
learn by traditional methods because of the difficulty of responding to complex instructions
and maintaining attention on several simultaneous stimuli presented during classes,
due to multiple deficits in social cognition indicators, behavioral changes, cognitive
deficits, such as in inhibitory control functions, and the presence of intellectual
disability in approximately 70% of cases[19],[20],[21].
Diagnostic reports also shows that 105 students (13.3% of those with SEN) are grouped
as having a learning disability or other psychiatric disorder that is not legally
recognized as SEN according to Brazilian law. The fact that there is such a high proportion
of SEN students recorded as having learning/psychiatric disorders further strengthens
the need to take steps to produce accurate diagnoses. This outcome raises the following
considerations: a) it is probable that these learning/psychiatric diagnoses do not
reflect the real primary condition, and it is the responsibility of the health services
to provide a reliable diagnosis so that these students are included as SEN students;
b) if this actually is the primary diagnosis of the student, we note an inappropriate
use of SEN services in these cases.
This study also mapped aspects related to the use of social inclusion services and
medication. The identified data show that, from a functional point of view, about
10% use a wheelchair, adapted transport or diapers. One interesting development is
the registration and classification of various functional domains using the criteria
of the International Classification of Functioning[22]. There have been some successful experiences in the Brazilian educational context[23],[24],[25]. As well, almost 50% of SEN students use medications regularly.
One noteworthy item in Table 1 is the low percentage of SEN students who have access
to specialized educational services or support. Approximately 67% do not use this
type of service. An analysis comparing the diagnostic condition with the use of these
services indicated that only 32% of students with intellectual disability, and 25%
with autism spectrum disorder were using them. To provide comprehensive care to this
population, pedagogical and educational measures, and adaptations to the curriculum
(multilevel or overlapping curricula), as recommended in studies from other countries,
should be made in the classroom[6].
Although the present study brings contributions for the field, it has some limitations
typical of studies based on secondary data, such as the reduced number of collected
variables and absence of some relevant information, such as the diagnostic status
of some of the sample.
In conclusion, these data suggest that there is a mismatch between the diagnostic
records and the SEN condition legally recognized according to Brazilian law, in addition
to the under-reporting and under specialized service use of students with disabilities.
