Submission Date: 2019-12-07
Review Date: 2019-12-21
Pubblication Date: 2020-01-04
Printed on: Volume 2, Issue I
Following the changes introduced by Legislative Decree no. 66/2017, the Multidisciplinary Evaluation Unitsestablished at the local health districts are mandated to draft a Functioning Profile (FP) based on the ICF Classification, for the purposes of establishing an Individual Project (Law No. 328 / 2000, art.14), as well as thepreparation of the Individualized Educational Plan (PEI) (Legislative Decree no. 66/2017, art. 5). The innovation introduced by the legislation is far-reaching, not only for the impact it has on the organization of the Services and on the procedures relating to school support and accompaniment towards the Life Project. Particularly relevant is the change of perspective brought by the adoption of the anthropological model of the International Classification of Functioning, Disability and Health (ICF). If, so far, the condition of disability hasbeen assessed on the basis of clinical parameters, the Functioning Profile now requires a biopsychosocial assessment of the person which will consider not only deficits and impairments, as well as its effect on the development process of personal experiences (personal factors) and the setting of daily life (environmental factors). Indeed, this threefold focal lens is the only means to comprehend the overall condition of a person with disability – encompassing their needs and wishes – which is intertwined to the quality and the complexity of the social networkto which they belong. Accordingly, the regulation foresees that drafting of the FP be jointly carried forth by physicians, rehabilitationprofessionals, evolutional age psychologists, evolutionary psychologists, social workers, paedagogists, specializedteachers, parents, and not least the very individual as by the principal of autodetermination. Following the modifications introduced with such Decree, the University of Verona began a trial aimed at developing n ICF-based FP model that is both sustainable an organizational level and functional to planning the Individual Projects and the PEI. Such trial has involved the Scaligera local health district ‘ULSS Company no. 9 a delegation of family Pediatricians of the province and the Local School Office in Verona.
The FP model produced in the pilot experience which is still active, contains some particular features that allow is formal as well as dynamic use in both the design and the monitoring and evaluation of educational, rehabilitation and care interventions. For this purpose, we created an online platform that processes the data collected and makes it available to the user in real time providing a series of qualitative and quantitative graphs and indicators, describing the biopsychosocial functioning of the subject and his/her needs for social inclusion. The present article describes the main elements of this pilot experience and the results obtained.
The International Classification of Functioning, Disability and Health (ICF) has been promoted and disseminated since 2001 by the World Health Organization (WHO). Updated every year, the ICF completes the “family of WHO classifications” which also includes the ICD (International Classification of Diseases and Related Health Problems), reaching its eleventh edition and comparable to DSM V. Given that the purpose of ICD is to classify diseases according to precise diagnostic criteria, the purpose of ICF is to describe the overall health status and, in particular, the consequences of different diseases on people’s quality of life.
These outcomes can be described through the meanings that the ICF attributes to the terms functioning and disability, which define the type of interaction among health conditions, personal and social factors, daily life activities and social life. The condition of disability manifests whenever the reciprocal influence of these components becomes affected by limitations to the person’s activities or restrictions to their social life. Function analysis allows to highlight how the causes of disability are not inherent to the health conditions per se, but rather to the way in which health conditions impact the life context, from which the person will receive support or be restrained. Therefore the FP allows to achieve a faithful description of the quality of individual-environment interactions.
This ability of systemic representation of the functioning/disability of an individual and the adoption of a universal language have promoted a broad application of the ICF to numerous target populations. A systematic analysis of the literature carried out by Cerniauskaite and collaborators (2011), has identified over one hundred works that present insights of the ICF and its application to specific subject categories. Such experiences share a common origin being developed starting from a careful selection of ICF codes (among the over 1,500 items of which it is composed), capable of describing the prototypical spectrum of the functioning of patients with specific clinical and social conditions.
The ICF classification and the biopsychosocial model of analysis of function are also becoming more widespread both in the healthcare and the social settings. The Rehabilitation Address Plan, approved on the February 2, 2011 and which today represents the most recent institutional reference in the field of rehabilitation, explicitly adopts the ICF as it represents a “unifying language for know the complexity of health conditions and build a profile of the operation that is the basis. Its three fundamental elements […] give the possibility to combine the bio-pathological aspects with the individual, relational and environmental ones. This gives the ICF the ability to guide the multidimensional assessment of the Person and the individual definition of the outcomes to be achieved through a Rehabilitation Project and its interventions.
Currently, numerous regions (Valle d’Aosta, Friuli-Venezia Giulia, Veneto, Tuscany, Umbria, Lazio, Molise, Campania, Puglia, Basilicata, Calabria, Sicily) employ the ICF classification for the multidimensional assessment of adult disability (SVaMDi), as a requirement for access to social and health services. Although the purpose for including ICF Classification in an assement can be multiple, the aim is generally a biopsychosocial reading of the needs of individuals experiencing specific health conditions, either in order to inform rehabilitation or to tailor dedicated services around each person’s individual needs. Consistently with such approach, the use of ICF for evaluation purposes are described in several works across literature, for example in the setting of pediatric patients affected by cerebral palsy (Van Ravesteyn, Scholtes, Becher, Roorda, Verschuren, Dallmeijer, 2010), of premature newborns (Msall , 20015), of patients affected by cancer (Tschiesner, Oberhauser, Cieza, 2011), stroke (Snogren, Sunnerhagen, 2009), rheumatoid arthritis (Simeonsson, 2009), severe myasthenia (Leonardi, Raggi, Antozzi, Confalonieri, Maggi, Cornelio et al., 2009), as well as from pathological addictions (Pasqualotto, 2016). The added value of such needs assessments relying on ICF is the opportunity it provides for performing comparisons between neuropsychological situations that feature complex health conditions (Casey, 2012).
Following these works, a series of pilot programs dedicated to people with disabilities have been launched by several Italian authors –among whom, some authors of the present article– in the settings of prevention of disabilities in the context of educational services for children aged 0-6 years (Lascioli, Saccomanni, Messetti, Pasqualotto, Chiamenti, 2016), of adult disability assessment within the development of Individual Projects (Pasqualotto, 2014), and of the drafting of ICF-driven Individualized Educational Plans (Lascioli, Pasqualotto, 2018).
In the educational setting, the Legislative Decree of 13 April 2017 n. 66, stating the “Rules for the promotion of school inclusion of students with disabilities”, as well as the supplementary and corrective provisions reported in the Legislative Decree of August 7, 2019, n. 96, introduced in the children and adolescents edition (ICF-CY, 2007) also the ICF biopsychosocial functioning perspective for schools. The most relevant changes concern the function of the National Health System in certifying disability for the purposes of offering support to special needs and the issue of inclusion within educational institutions. Specifically, the Multidisciplinary Evaluation Units, established at Local Healthcare Districts are required to draft the ICF-based Functional Profile (FP) of the student with certified disability in replacement of the Functional Diagnosis and the Dynamic-Functional Profile. Furthermore, such FP is intended to become the main reference for the Social Services appointed to formulate the Individual Project (Law no. 328/2000, art. 14) and for the teachers who elaborate the ICF-based Individual Educational Plan (D.Lgs. 66/2017, art. 5).
Pending the new guidelines provided by the Ministry of Health in agreement with the Ministry of Education, University and Research (MIUR), the Department of Human Sciences of the University of Verona has started a pilot program aimed at developing a FP model preparatory to the development of the ICF-based PEI that teachers must pursue starting from the current school year. This pilot program involved the Scaligera Local Healthcare District n. 9, representatives of the province’s family Paediatricians and of the County School District Office of Verona.
Materials and Methods
The ICF was initially developed as a classification tool having descriptive purposes, however, the WHO itself has encouraged its use for evaluation purposes as well (Whodas 2.0 – Disability Assessment Schedule, 2010). This position has also been stated in the ICF-CY, which clarifies that the ICF classification unit is not aimed at posing diagnoses but rather at elaborating functional profiles (WHO, 2007, p. 23). Indeed, the ICF evaluates and describes in terms of individual functioning the consequences of the complex relationship between an individual’s health conditions and the personal and environmental factors that represent the circumstances in which she/he lives.
The most common use of the ICF for evaluation purposes worldwide is that of selecting the most representative or most interesting items among the over 1500 ones listed in the WHO list that can describe a specific target and the functioning/disability resulting from a specific health condition (Cerniauskaite, Quintas, Boldt, Raggi, Cieza, Bickenbach, et al., 2011). This Core Set of items from ICF aimed at evaluating a specific target, the reference to the work of Bickenbach, Cieza, Rauch & Stucki (2012) is useful. The authors highlight that the ICF Core Sets facilitate the description of the operation, providing lists of essential categories for describing specific health conditions in relation to different contexts, including those of a healthcare nature, and that the selection of the ICF codes to be used for the analysis of the functioning must derive from a scientific process based on preparatory studies and on the invocation of a multidisciplinary group of experts.
This same method was also followed for the launch of the pilot program by the University of Verona Department of Human Sciences- which was made possible thanks to the support of GlaxoSmithKline Spa stemming from the fruitful and on-going collaboration of two former projects “Reading for growing” and” Everyone different. Everyone the same”, aimed at preventing childhood disabilities. In agreement with the research protocol drafted by the University of Verona in the preparatory phase for the research action, we set up 3 expert groups in a multidisciplinary perspective:
- A group of professionals of the operating UVMD (Muldisciplinary Evaluation Unit) of the Verona ULSS Health district, composed of a total of 14 professional figures among which a child neuropsychiatrist, physiatrist, psychologist, rehabilitation therapist, professional educator, social worker (gathered together thanks to the involvement of the Social and Healthcare Supervisory Board and the of the Supervisors of the two complex units to which these professionals belonged);
- a group of 20 teachers specialized in special needs support and inclusion experts, identified with the collaboration of the County School District of Verona;
- a delegation of family Paediatricians operating in the Verona area, including the National past President of FIMP, the provincial president of FIMP, the president of the Verona chapter of the Paediatric Cultural Association.
The composition of the research groups for the pilot program reflects the organization the Multidisciplinary Evaluation Unit must have in order to draft the FP. According to the provisions of Legislative Decree no. 66 (art. 5, letter c) and the following Legislative Decree no. 96/2019, the UVM must be composed by a specialist in child neuropsychiatry or a specialist physician expert in the disease that connotes the health status of the minor; by at least two of the following figures: a healthcare rehabilitation professional, a developmental age psychologist, a social worker or a pedagogist or another delegate, with specific professional qualification, representing the Local Authority of competence. Furthermore, the collaboration of the minor’s parents and possibly his direct involvement (according to the principle of self-determination), the collaboration of a school representative –either the school principal or a teacher specialized in teaching to children with special needs.
As to the methodological approach, we decided to abide by the participatory research assumptions (Participatory Action Research) (Richards & Morse, 2009, p. 77). As explained by Mortari, collaborative research-action follows a cyclical trend– that is, it repeats the sequence of heuristic acts typical of this methodology (2009, p. 93-94; 98): design, enactment, and analysis and redesign. This trend characterized the process of defining the tools, their experimentation and subsequent revision.
For each of the three groups,we attempted to foster a shared and cogenerative learning community (Mortari, 2007, p. 141). For this purpose, we planned some moments to discuss the assumptions and theories that accompany and create the operational setting for the professionals, which resulted in definition following research objectives were shared and then defined:
- to identify a Core Set of ICF codes, necessary and sufficient to generate a Functional Profile preparatory to the preparation of the Individualized Educational Plan, capable of representing the condition of special educational need in developmental age;
- define an organizational and operationally sustainable method that ensures collaboration between different subjects in the drafting of the FP as foreseen in the provisions on school inclusion.
Each research group contributed to the research objectives based on their specificities. The UVM specialists discussed the possibility of using ICF codes to replace the elements present in the Functional Diagnosis, identifying the ICF items necessary to describe the Functions and Structures of the body, also for the purpose of defining the care needs of the disabled child. The group of teachers put particular effort in the selecting the ICF items relating to the different dimensions of Activity and Participation, as well as the most recurrent Environmental Factors. The group also provided significant input into developing a FP model that could be used as outline for drafting of the PEI. The delegates of family paediatricians tested the possibility of using the ICF-based functioning assessment to integrate the health reports that they develop to monitor developmental processes of those children, thus adding a more attentive perspective on their life contexts, as foreseen by the ICF biopsychosocial paradigm.
The joint efforts of the working groups were then tested on the field and gradually gave shape to an assessment tool in the form of a questionnaire –i.e., a proposition in the form of a question of the selected items, the effectiveness of which is documented by previous works in literature (Leonardi , 2008).
Alongside the testing of the questionnaire, we also developed a model for the graphic rendering of the data for an immediate and easy-to-read visual representation of the overall picture. For this purpose, we used on a triage-like colour code labelling with green those items with qualifiers 0 to 1, with yellow qualifier 2 items, and red items with qualifiers 3 and 4 Figure 1 depicts the labelling model produced by the processing program built by the University of Verona.
Likewise, Figure 2 depicts the colour code labelling for Environmental factors, which based on the biopsychosocial analysis of the disabled child, are represented in green act as “facilitating” factors and in red when they act as “barriers”.
Another example of how the data collected through the compilation of the items relating to the Functions and Body Structures are processed in the FP model resulting from our research is shown in Figure 3. In this case, the model produced a health profile, which highlights the presence of impairments. The two differently colored columns represent the Functions and Body Structures domains with the impairments, as well as their level of severity (on the ordinate axis, qualifiers from 0 to 4).
In addition to a descriptive function, the researchers aimed to enrich the FP with guidance tools addressed to the users of the special educational needs assessment and provide elements for assessing outcome assessment, by means of an evidence-based approach .
Such guidance provided in the FP meets the call by the WHO for the use of the ICF as an educational tool, aimed at programming interventions centred on life contexts and on the assistance and obstacles that interact within (WHO, 2007, p. 35).
Specifically, participants addressed the following issues: how to measure the overall level of functioning of a child with disabilities, so to produce a cumulative indicator of his/her evolution; whether social inclusion can be classified with a score; how to measure the support put in place by the social network the child belongs to.
Results and Discussion
The present joint research project fulfilled the initial research questions with several interesting results and achievements.
First of all, the work produced the “ICF-School – complete version” questionnaire, consisting of a selection of codes divided as follows: 33 items related to Body Functions, 15 items for Body Structures, 56 items of the Activity & Participation domain, 34 relating to Environmental Factors. The questionnaire was then edited and released also in a “ICF-School – version for parents”, which instead only reported the codes specifically relating to the domains of Activity and Participation, and an assessment limited to performance alone. These two tools were then uploaded and made freely accessible on the website www.icf-scuola.it. The project further led to the creation of a web platform (www.icfapplicazioni.it) for remote collaboration for the processing of the FP by authorized subjects as identified by Legislative Decree no. 66/2017.
The processing of the answers and data gathered through the questionnaire is performed by means of logical and mathematical algorithms that allows to view elements of interest emerging from the research.
- Reporting on the support network, through a “radar” graph (fig. 4) that collects and graphically renders the most important environmental factors for a minor with a disability.
- The percentage of overall functional level obtained from the sum of the scores, on an inverted scale, on the performance in the 9 areas of Activity & Participation and the mean score for Functions and Body Structures. In the development of the score we intentionally assigned a reduced weight to the health component (1:10), in order to validate the ICF approach that widens the perspective from biological aspects to a more systemic, biopsychosocial vision of the functioning.
- The inclusion index, obtained by adding the mean of the environmental factors that express the acceptance in the life setting (friends and schoolmates, neighborhood, associations, teachers) and the inverted-scale cumulative values of performance in the areas that assess social participation (D7, D8, D9). The index is a relative indicator (not absolute, like the previous) for a theoretical model that assigns relevance to social inclusion / exclusion processes to both the action of the subject and the acceptance of the subject on behalf of the territory to which he/she belongs.
- The social support index, which provides a measure of the support that the subject receives from the social network. It is obtained by counting the presence and intensity of the support offered by different actors: extended family, friends and shoolmates, neighborhood, associations, health workers, social workers and volunteers, teachers, social support services, welfare / social security resources.
- The need for support for independence, which represents the absolute percentage of the socio-assistance needs of the child with disability. It is calculated by adding the assessments of self-awareness (b110), control over excretive faecal (b5253) and urinary functions (b6202), the set of neuro-musculoskeletal and movement-related functions (B7) and structures (S7), communication (D3), motor skills (D4), self-care (D5), interactions with others (D7). This indicator can be used for the allocation of additional resources of educational/care staff to support school attendance.a) un’evidenza della rete di supporto, attraverso un grafico “radar” (fig. 4) che raccoglie, rappresentandoli, i fattori ambientali di maggior rilevanza per un minore con disabilità.
To facilitate the drafting of the PEI from an ICF perspective, the data processing produces the graph “Dimensions of the individualized educational plan” (see figure 6), which indicates the areas of activity and participation that are most problematic according to the analysis of the functioning, indicated by the height of the lines with respect to the abscissa axis (consider that for the ICF, the qualifiers with the highest score correspond to the most critical points). In the example below, the dimensions of relations / interactions, together with the dimension of autonomy result to be the most problematic. Hence, based on the difficulties highlighted by the PF, the ICF-based ICF will have to specify the interventions necessary that need to be put in place to promote the educational inclusion of the student, with special attention to indicating the facilitators and barriers on which to act in the school and social context, according to the biopsychosocial perspective at the basis of the WHO ICF classification (Legislative Decree 66/2017, art. 7, paragraph 2).
As of November 30, 2019, the portal www.icfapplicazioni.it had been used by almost 2,000 users, mainly teachers from schools who were invited to experiment with the ICF-based PEI model (Lascioli, Pasqualotto, 2018), and by social rehabilitation professionals and healthcare as well.
Following Legislative Decree no. 66/2017 the ICF in school and social inclusion paths has been formally established and disseminated in the operating practices of all those who, for different reasons, dedicate their work to people with disabilities, thus constituting a far-reaching event. The Functioning Profile, which represents its most relevant technical expression, can favour a more extensive approach to reading needs thanks to the consideration of all the components of functioning from the biopsychosocial perspective.
The pilot testing conducted by the Department of Human Sciences of the University of Verona becomes relevant to those who believe they can use the WHO Classifications (ICF, 2001; ICF-CY, 2007) for the development of inclusion programs for people with disabilities, recognizing the validity of the research methodology (Maxwell, Granlund, Augustine, 2018). The open access to these tools for teachers and rehabilitation professionals allows an active use of the ICF for the identification and intervention on special educational needs (Sanches-Ferreira, Lopes-dos -Santos, Alves, Silveira-Maia, 2017) following evidence-based criteria (Raggi, Meucci, Leonardi, Barbera, Villano, Caputo, Grassi, 2014). Taken together, aside from responding to the provisions of Legislative Decree 66/2017, this research experience appears to have intercepted these trends, while offering the scientific community an innovative contribution to the field.
The experimentation also allowed to explore the potential deriving from the online compilation of the FP by the various actors who, by law, are required to actively collaborate in the drafting of this document, as this would have not been possible otherwise. Finally, this joint research action, between universities and territories has allowed a positive contamination between academic research and the system of social and health services and schools, opening to an operational area that will hopefully enrich the on-going development of the guidelines on the FP and the PEI by the Ministry of Health and MIUR are working on.
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