Marcos García Hernández

CHILDREN AND
ADOLESCENTS WITH
SPECIAL
EDUCATIONAL NEEDS

ASSIGNMENT 3

Marcos García Hernández

2022/2023
Marcos García Hernández

Part 1:

In everyday life, people must take part, make decisions, and interact in society among other
things. This process is known as participation. The current definition of this term emerged from
the work of Eyssen, Steultjens, Dekker, and Terwee (2011). These authors define this concept
as follows: 'engaging in roles in the domains of social, familial, domestic, financial,
work/education, or in a general domain.' In other words, they understand participation as the
process by which a person acts and intervenes in different aspects of life.

However, this definition does not include all the realities of certain population sectors. One of
these sectors is individuals with Profound Intellectual and Multiple Disabilities (PIMD).
Consequently, Hanzen, G., van Nispen, R. M. A., van der Putten, A. A. J., & Waninge, A. (2017)
develop, through this article, a definition of participation for individuals with PIMD.

‘Participation of adults with VSPID means active engagement and involvement in

daily activities, social contacts, and societal and leisure activities, including
opportunities for inclusion, experience and discovery. Active engagement and
involvement of this population can only occur in the context of a relationship with
the environment (‘being understood’) wherein the adult with VSPID has an active
and steering role (‘self-management and autonomy’).’

Comparing both definitions, several common points stand out. However, there are numerous
differences between the two.

Firstly, both definitions highlight the importance of engaging in and being involved in activities
across various aspects or domains actively. All individuals participate in activities regardless of
whether they have a disability or not. This is reflected in the article by Evenhuis, Sjoukes, Koot,
and Kooijman (2009), where they explain that individuals with disabilities (in that specific case
were intellectual disabilities) also engage in activities, although with certain limitations.

Additionally, autonomy is a key point in both definitions. They both present participation as a
process in which the individual does not rely on anyone but rather makes decisions or acts
according to their own criteria. However, based on the findings of Hanzen et al. (2017), it is
evident that individuals with PIMD find autonomy in activities where the environment is
familiar. In line with this, the range of activities included by the definition of PIMD will be much
diverse. It will incorporate leisure-time activities, inclusion activities, experiential activities, and
discovery activities, in addition to the daily activities mentioned in the general definition.

As a conclusion and considering my opinion, this new definition has not been specifically
created for individuals diagnosed of PIMD. The definition created by Hanzen et al. (2017) aims
to include all those already covered by the general one, as well as those who were previously
excluded. In doing so, it improves upon all previous definitions.

Part 2:

Observation is a very useful method of data collection in research. As explained by Campos, G.

& Lule, N. E (2012), observation is the simplest and most logical method by which one can
Marcos García Hernández

record and verify what is intended to be analyzed. This method will be the primary one in most
studies related to the social sciences. However, is observation effective in research involving
individuals with profound intellectual and mental disabilities? Through the article by Van Keer,
I., Ceulemans, E., Bodner, N., Vandesande, S., Van Leeuwen, K., & Maes, B. (2019), we can
extract numerous advantages and disadvantages of applying this method in research with
individuals with profound intellectual and mental disabilities.

Among the main disadvantages of direct observation, the following are the most important:
the impossibility of generalizing the obtained data and the variation of behavior due to the
presence of an observer.

The impossibility of generalizing the obtained data is one of the main obstacles of applying
observation in individuals with profound intellectual and mental disabilities. As explained by
the authors of the article by Van Keer et al. (2019), the interactive behaviors of children may
not fully represent their overall behavior. Additionally, according to Goldbart, J. (1994), their
behaviors tend to vary significantly over time.

Regarding the second disadvantage, the variation of behavior due to the presence of an
observer, it has been found that it is very likely for behavior to change when confronted with
an observer. Individuals with profound intellectual and mental disabilities may be more
cautious when interacting or participating in the study due to the presence of the researcher.
However, as stated by the authors of the article by Van Keer et al. (2019), not only those who
are part of the sample will vary in their way of acting. Parents, when faced with a camera
and/or an observer, may also alter their behavior. As a result, the data and results could vary
substantially.

Another highlighted disadvantage would be the lack of diagnoses. In some cases, as explained
by Maes et al. (2021), at early ages, some children have not yet received an official diagnosis of
profound intellectual and multiple disabilities (PIMD). Because of this, many studies conducted
with young children have a wide-ranging sample with different realities. This lack of a specific
PIMD diagnosis can alter the results and greatly hinder the analysis of the data.

Among the advantages, two are notable: expanding the knowledge of individuals with PIMD
and the easy collection of information through this method. Observing individuals with PIMD
would allow for the expansion of knowledge about this group of people. In this way, some of
the needs, limitations, or behavioral patterns that individuals with PIMD present would be
discovered and understood.

On the other hand, the method of observation facilitates the task of gathering data and
information for researchers. According to the DSM-5 manual (2013), individuals with PIMD face
serious difficulties in communication. These individuals primarily express themselves "through
nonverbal and non-symbolic communication" (DSM-5, 2013). Through observation,
information can be collected without the need for participants to communicate verbally or in
writing, as would be the case with other methods (e.g., interviews).

As demonstrated, there are advantages and disadvantages when applying observation in

individuals with PIMD. However, it can be the best method when there is no other way to
gather information.
Marcos García Hernández

References:
Asociación Americana de Psiquiatría. Guía de consulta de los criterios diagnósticos del DSM 5.
Arlington, VA, Asociación Americana de Psiquiatría, 2013.
Campos, G., & Lule, N. E. (2012). La observación, un método para el estudio de la
realidad. Xihmai, 7(Nº 13), 45-60.
Evenhuis, H. M., Sjoukes, L., Koot, H. M., & Kooijman, A. C. (2009). Does visual impairment lead
to additional disability in adults with intellectual disabilities? Journal of Intellectual
Disability Research, 53, 19–28.
Eyssen, I. C., Steultjens, M. P., Dekker, J., & Terwee, C. B. (2011). A systematic review of
instruments assessing participation: Challenges in defining participation. Archives of
Physical Medicine and Rehabilitation, 92, 983–997
Goldbart, J. (1994). Opening the communication curriculum to students with PMLDs. Educating
children with profound and multiple learning difficulties, 15–62.
Hanzen, G., van Nispen, R. M. A., van der Putten, A. A. J., & Waninge, A. (2017). Participation of
adults with visual and severe or profound intellectual disabilities: Definition and
operationalization. Research in Developmental Disabilities, 61, 95–107.
https://doi.org/10.1016/j.ridd.2016.12.017
Maes, B., Nijs, S., Vandesande, S., Van Keer, I., Arthur-Kelly, M., Dind, J., Goldbart, J., Petitpierre,
G., & Van der Putten, A. (2021). Looking back, looking forward: Methodological
challenges and future directions in research on persons with profound intellectual and
multiple disabilities. Journal of Applied Research in Intellectual Disabilities:
JARID, 34(1), 250–262. https://doi.org/10.1111/jar.12803
Van Keer, I., Ceulemans, E., Bodner, N., Vandesande, S., Van Leeuwen, K., & Maes, B. (2019).
Parent-child interaction: A micro-level sequential approach in children with a significant
cognitive and motor developmental delay. Research in Developmental Disabilities, 85,
172–186. https://doi.org/10.1016/j.ridd.2018.11.008