Inclusive education for students with intellectual and developmental disabilities (IDD) is a major challenge in education policy agendas. As a movement, since the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and its facultative protocol were passed [1
], inclusive education has evolved from a principle guiding education to a right to be guaranteed for all students. The UNCRPD embodies the right to inclusive education in its Article 24, which stipulates that states parties must ensure an inclusive education system at all levels and lifelong learning for all students directed to guaranteeing their access, participation, learning and development to their fullest potential [2
More than a decade since the UNCRPD was passed, students with IDD still experience low inclusion rates [5
]. To reverse this trend and support their inclusion, several scholars (e.g., [3
]) have proposed the adoption of the supports paradigm within general education contexts, an approach developed over decades of research and practice in the field of IDD [8
]. The supports paradigm to support the inclusion of these students is important because it provides a renewed view of IDD and of the students who have the condition [2
], a work methodology that focuses on understanding the globality of these students and their holistic support needs in education contexts and activities [5
] and tools that facilitate the implementation of this conceptual and applied framework [12
The supports paradigm is embedded in a social-ecological approach and strengths-based perspective [13
]. Through the social-ecological approach, IDD is conceptualized as a mismatch between personal competencies and environmental demands, defined by the contexts of participation and age- and culturally-valued activities to develop in such contexts [14
]. This misfit originates supports needs, defined as a “psychological construct referring to the pattern and intensity of supports necessary for a person to participate in activities linked with normative human functioning” [13
] (p. 135). By stressing the interaction “person × environment”, the essential characteristic of the supports paradigm is that all people will present support needs since all people experience mismatches in certain situations and moments of their lives. The key is that the support needs of persons with IDD are extraordinary and extend beyond what most typically functioning people require to participate in the same contexts and activities [15
Applying this paradigm to education means understanding students with IDD as learners who experience mismatches between their personal competencies and the environmental demands posed by education contexts and activities [3
]. These demands are defined by what is expected from students with IDD in the classroom (i.e., in relation to access to and learning from the general education curriculum), at school (e.g., social activities or self-determination), and in the community (e.g., school trips). Hence, given that education contexts go beyond the classroom and that education activities are linked not only to learning, the supports paradigm claims that students with IDD may present holistic support needs—not only those related to learning from the curriculum—that will influence their access, participation, learning and development [4
In fact, in opposition to education perspectives that understand students with IDD as having significant limitations in intellectual functioning and adaptive behavior, the supports paradigm shifts the focus towards the current functioning of the students with IDD and the extraordinary supports they require to access, participate and learn in the same activities and contexts than their same-age typically-developing peers [2
]. Along with this social-ecological approach, the supports paradigm stands on a strengths-based perspective that assumes that, along with their extraordinary support needs, students with IDD have strengths to build upon, and this should be understood on the same basis as their support needs. Moreover, students with IDD should be the causal agent over the supports they receive so that they take an active role in the definition of vital goals—including those pertaining to their learning—and in the vision of the future used to determine their strengths and support needs [6
An active role by students with IDD and respect for their self-determination in the definition of their goals, as well as understanding of their strengths and support needs in education contexts and activities, are the starting points from which to provide systems of supports aimed at covering their needs, developing their strengths, improving their functioning and enabling them to achieve personal outcomes aligned with the goals of access, participation, learning and maximum development [3
]. Supports are the resources and strategies to bridge the gap experienced by these students, always bearing in mind the need to maximize “student x environment interaction
” rather than focusing on rehabilitating the student with IDD [14
Derived from this view, the supports paradigm brings to education systems the “support needs assessment and planning process” [2
]. This process synthesizes the knowledge on the student learning and vital goals, the information about his or her global support needs and strengths, the available resources and supports, the people responsible for providing the supports, and the contexts and activities in which these supports will be put in place, using personalized educational plans (PEPs) that systematically address the goals of access, participation, learning and development of the student with IDD [4
]. Effective implementation of the supports paradigm in education requires measuring support needs [2
]. Only in this way will it be possible to accurately identify the pattern and intensity of the supports and resources required by students with IDD for them to successfully participate in general education activities and contexts with their typically functioning peers. The importance of the support needs construct in applying this paradigm has motivated the development of tools for its measurement. Although different approaches to measuring support needs exist, efforts are being made to develop standardized measures of the extraordinary support needs of persons with IDD based on the supports paradigm [15
]. The advances in the measurement of extraordinary support needs have been evident [17
], but performing a support needs assessment with psychometric instruments poses challenges that are yet to be addressed.
One challenge relates to the nuances in the support needs construct in the case of children. In childhood, support needs are strongly correlated with age. Hence, children (with and without IDD) present higher levels of support needs the younger they are, and as they age, their support needs decrease [16
]. Therefore, a practical problem concerning support needs assessment for students with IDD is to distinguish whether the support needs experienced by a child with IDD are linked to his or her age (i.e., age-related typical support needs—support needs that typically-developing same-age peers also possess) or whether, on the contrary, they are extraordinary (i.e., connected to the IDD). This challenge has direct implications for the inclusion of students with IDD: although the goal of support needs assessment is to meet the unique needs of each student, the resources and strategies available for this are limited, especially in education contexts given the cuts in education that hinder quality education for all. Therefore, knowing the areas where students with IDD have extraordinary support needs is a pressing challenge for efficient supports planning that lessens the impact of the economic cuts and brings the supports paradigm—and its implications—closer within schools [15
This age-related concern has been considered in the development of the Supports Intensity Scale—Children’s Version (SIS-C) [12
], the first standardized support needs assessment measure for children with IDD. The SIS-C is designed to assess extraordinary support needs in children with IDD aged 5 to 16 years in order to provide the personalized supports they require to access and participate in key activities of their daily living contexts (e.g., school or neighborhood). Because support needs would be confounded by children’s age, Thompson et al. [12
] stratified the standardization sample to develop norms according to age cohorts (i.e., 5–6, 7–8, 9–10, 11–12, 13–14 and 15–16 years) and levels of intellectual functioning within each age cohort [18
The SIS-C is organized into two sections: Part I, Exceptional Medical and Behavioral Needs, and Part II, the Support Needs Scale. Part II focuses on support needs assessment in 61 daily life activities across seven domains: home life (HLA), community and neighborhood (CNA), school participation (SPA), school learning (SLA), health and safety (HSA), social activities (SA) and advocacy (AA). To determine extraordinary support needs, each activity is rated across three dimensions, each one following a five-point Likert rating scale: type of support (0 = none; 1 = monitoring; 2 = verbal/gestural prompting; 3 = partial physical assistance; 4 = full physical assistance), frequency of support (0 = negligible; 1 = infrequently; 2 = frequently; 3 = very frequently; 4 = always) and daily support time (0 = none; 1 = less than 30 min; 2 = 30 min to less than 2 h; 3 = 2 h to less than 4 h; 4 = 4 h or more). The tool can be used to calculate a “support needs index”, which provides information on the point along the extraordinary support needs continuum where children with IDD are, and a “support needs profile”, which yields information on the pattern and intensity of the extraordinary supports required by children with IDD across the seven domains measured. The SIS-C is administered by a qualified interviewer (often a school psychologist or another member of a psycho-pedagogical team with expertise in psychological interview skills) through a structured interview with at least two respondents. Observers reporting the support needs of a child with IDD must know the child well and must have recently observed the child in different contexts [12
]. Implementing the SIS-C requires the interviewer to have completed at least a four-year degree and to have received training in the foundations of the supports paradigm and in the SIS-C goal. Moreover, the interviewer must have good interview-related skills (e.g., to create a good rapport with the observers, make explicit their fears and expectations, explain to them clearly that the goal of the tool is to measure support needs and not performance or reformulate and share with the observers the information they provide to be sure that everybody has the same understanding about the support needs of the child with IDD [15
]). This tool has already been implemented to expand inclusive opportunities in students with IDD within general education contexts through the development of PEPs that, consistently with the supports paradigm, support these students in key areas of their lives, thus contributing to their educational and social inclusion (e.g., [7
The SIS-C is being internationally adapted and validated, and several studies have provided evidence of SIS-C’s psychometric properties (for detailed information, see [17
]). One country that has been particularly involved in SIS-C validation is Spain since it uses two versions of the tool: the SIS-C Spanish and SIS-C Catalan translations [17
]. Currently, much importance is being given in Spain to the use of the SIS-C for a support needs assessment and planning process that overcomes attention to diversity measures that remain anchored in deficit-based perspectives, often neglecting a global view of the students’ needs [2
], which has led to systematic segregation of students with IDD [20
However, using the SIS-C in practice necessitates addressing the aforementioned challenge concerning the nature of the support needs of children with IDD. Despite the efforts of SIS-C research to illuminate the distinction between extraordinary versus age-related typical support needs (e.g., [16
]), this concern involves decision-making by the interviewer—the person who implements and scores the SIS-C. In this respect, when implementing the SIS-C, the interviewer is the first person to face the challenge of discerning the nature of the support needs of a child with IDD based on the information reported by observers. Hence, the interviewer’s knowledge on this issue may influence how he or she interprets the information reported by the observers and decides on the type of support needs of the child, which, in turn, will influence the allocation of resources and supports to cover the needs of the student with IDD.
Given the importance of training for implementing the SIS-C, the American Association on Intellectual and Developmental Disabilities (AAIDD), the SIS-C launcher, has developed and distributed different training materials to the countries participating in SIS-C validation. These materials aim to train interviewers in implementing and using the SIS-C. To help identify the type of support needs of a child with IDD, the AAIDD developed a list of indicators (hereafter, list of indicators) based on a teachers’ survey. The list of indicators describes age-related typical support needs through examples representing the probable support needs that typically-developing children might have for the same activities, domains and age cohorts used in the SIS-C (given that typically-developing children are expected to present only these support needs and no extraordinary ones). Through these descriptions, this training material seeks to support interviewers by providing qualitative information about the age-related typical support needs for each SIS-C item and thus help them make decisions on the nature of support needs of a child with IDD based on information provided by the observers [21
Implementing the SIS-C in Spain to develop an efficient support needs assessment and planning strategies requires addressing the practical challenge of discerning the nature of support needs in children with IDD. In this respect, the availability of the Spanish SIS-C task force of the list of indicators may help interviewers address this challenge with the descriptions provided by the list. However, this list remains unexplored in Spain; hence, it is necessary to adapt it and test its appropriateness in this context prior to using it to train interviewers. Considering this requirement, the purpose of this study is twofold: to present the translation and adaptation of the list of indicators in Spain and to furnish evidence of its appropriateness. The research questions guiding the analyses of the appropriateness of the list of indicators are:
Can the indicators included in the list of indicators be considered valid sources for accurate descriptions of age-related typical support needs for the same activities, domains and age cohorts as those used in the SIS-C in Spain?
Is the list of indicators an effective survey for collecting teachers’ subjective impressions of age-related typical support needs in the Spanish context (i.e., can the appropriateness of the indicators be ascertained after analyzing how the information used to determine their content validity has been gathered)?
This article presents evidence of the appropriateness of SIS-C training material in Spain to support interviewers to discern the nature of the support needs of children with IDD while implementing the SIS-C. Achieving this distinction is critical for efficient support needs assessment and planning that maximizes resource allocation in education to support the inclusion of students with IDD. Content validity analyses of the indicators were conducted, and the rating scale’s appropriateness of the list of indicators was examined.
Regarding the first research question, the BWN and Bangdiwala’s agreement charts were calculated for each indicator. Judges (teachers) exhibited strong agreement when categorizing the accurateness of the indicators describing age-related typical support needs. For 353 indicators, the agreement size was high and around the agree category, showing evidence of their content validity. Only 13 of the 366 indicators presented difficulties regarding content validity. These indicators were situated mainly within the 9–10, 13–14, and 15–16 age cohorts in the HSA and AA domains, and professionals tended to consider that greater support was required (i.e., an agreement concerning the category disagree; students need more support than described).
Different explanations may illuminate the results for these indicators. The areas for which the indicators did not function well are related to health, self-determination and social relationships for children aged 9–10 years and adolescents aged 13–16 years. Before further research is undertaken, developmental psychology can provide insights into these results. A constant in human development research is that as people grow and reach certain stages of development, developmental milestones become increasingly complex [28
]. Therefore, milestones can identify particular difficulties during adolescence that are due to risk-taking behaviors [29
] related to the HSA domain and social, cognitive, emotional and behavioral changes and competencies [31
] linked to interactions with others (which involve the SA and AA domains). Thus, as people grow, they face new challenges that may demand greater support from others, and teachers—perhaps aware of this—have considered that the typical age-related support needs to be described for these activities and domains needed to include descriptions indicating more support.
Concerning the rating scale’s assessment analyses, 222 judges assessed how the rating scale works while assessing indicators (i.e., items) describing age-related typical support needs. These analyses show that category 1 (disagree; students need less support than described) seemed not to have been understood by judges in Spain, as evidenced by data from multiple iterations that tested the facet and rating scale adjustment to the MFRM model. The adjustment was achieved only after collapsing categories, whereas all other categories (including agree) showed a good fit, indicating that the judges understood them.
The results of the rating scale’s analyses highlight the most important finding of this work, particularly when considered alongside the results of content validity. The fact that one of the rating scale’s categories did not work in Spain implies that although evidence on content validity was found for 353 indicators, the indicators should not be used. Determining whether the indicators work is impossible since the rating scale used to gather the information used for testing their content validity did not fit the logistic model. Hence, additional research is required before using the list of indicators to train interviewers in Spain to support the SIS-C use.
The lack of international studies furnishing evidence of the appropriateness of this list of indicators hinders the generation of discussion regarding our findings. Nevertheless, the main finding reported in this study in relation to this material in Spain has important implications for researchers working on SIS-C validation who have access to SIS-C training materials. If training materials associated with the SIS-C (regardless of their purpose) are to be used, then rather than assume they are valid, the appropriateness of those materials must be analyzed. If the gathered evidence suggests that the material requires additional research (as in this case), there is no methodological justification for its use. However, without analyzing these materials, whether their use is justified, cannot be known. Given that interviewers must be qualified to administer the SIS-C [12
] and that this qualification is provided through training, offering interviewers training based on materials whose appropriateness is unproven could bias the training. This bias may distort information gathering through SIS-C use, providing a poor basis for support planning, which could hinder the development and inclusion of children with IDD instead of enhancing their opportunities. Hence, the lack of studies that have analyzed SIS-C training materials and the list of indicators is troubling because these indicators are closely related to the use of the SIS-C, a tool intended for international use in areas such as health, social services and education. Thus, additional studies on this topic are required to generate discussion.
Another implication of this work is that the latest available approaches are preferable to address a research concern when necessary. In this study, not only did we conduct analyses of content validity, but also we performed analyses of how the information used for that purpose was gathered (i.e., rating scale’s assessment). In this case, if the information provided by teachers had been used only for content validity analyses, the main finding of this work would have been evidence of content validity for nearly all the indicators. However, as discussed, the MFRM model analyses indicated the need for additional research prior to the use of the list of indicators in Spain.
The present research has several strengths. First, it foregrounds the SIS-C training materials as the object of study. This study is the first to contribute evidence concerning the list of indicators, which aims to help interviewers address challenges concerning SIS-C use, like discerning the nature of support needs in children with IDD. Second, this work offers researchers who have access to SIS-C training materials a methodological framework for gathering evidence on the list of indicators to generate discussion. Third, this work has been parsimonious, and thus the content validity of each indicator was studied. Finally, although the number of participants per age cohort can be considered reduced, to our knowledge, this study is the only work to assess the appropriateness of a survey’s rating scale (i.e., in this case, the list of indicators), adopting the MFRM model using 222 judges.
However, this work also has limitations. First, the study used an incidental sample, which does not assure representativeness and affects the generalizability of results. On the other hand, the number of participants per age cohort was small. Considering this limitation, a bootstrapping strategy was adopted to generate 10,000 different versions of the same data pool. Second, regarding the rating scale’s assessment, the judges were all teachers, so testing the extent to which their expertise influenced the results was impossible. Finally, the list of indicators (training material), the study design (contributing evidence on the list’s appropriateness) and the results (additional research is required before using this material in Spain) highlight limited yet important practical implications of this research.
Thus, although additional research is required before using the list of indicators in Spain, the significance of a valid list of indicators is worth stressing, given its role in supporting the use of the SIS-C to distinguish between extraordinary and age-related typical support needs in children with IDD. In this sense, the importance of training for SIS-C implementation and scoring [12
] necessitates the development of training programs with different goals (e.g., discerning the nature of the support needs of children with IDD). The significance of offering evidence concerning the appropriateness of SIS-C training material is that it guarantees an adequate starting point to develop such training programs. Once developed, it will be necessary to investigate the efficacy of the training programs, given their purpose. Thus, this work has an applied relevance on which to base the development of SIS-C training programs.
The limitations highlighted serve as a starting point for future research. Regarding the rating scale’s analyses, although the present authors took the approach followed in the original list of indicators using teachers as participants, participants from different areas (e.g., social work or psychology) should be included, and the ratings provided by them should be compared with those presented in this study to analyze the presence or absence of biases depending on each professional’s expertise. If the data again show that the rating scale is ineffective, then redefining the categories would be necessary, as the MFRM model shows. Thereafter, analyses of the content validity of the indicators should be conducted. If the data suggest that certain indicators do not show evidence of content validity, a qualitative study should be conducted addressing which age-related typical support needs, in the participants’ opinions, would be appropriate to pursue the activities corresponding to the indicator, to improve the indicators’ accurateness.
Finally, the development of a training program aimed at enhancing the scoring of the SIS-C must have a clear end in mind: to offer to schools and psycho-pedagogical teams support for a more efficient supports planning to shorten the distance between the competencies of students with IDD and the environmental demands they face in education contexts and activities to promote their access, participation, learning, and development to their fullest potential. Only through this can be built a strong and inclusive society [33
] where all people, no matter their personal or social conditions, contribute on an equal foot with others, as citizens whose rights are guaranteed [1