Students with intellectual disabilities: evaluation, monitoring and inclusion

Related article: “Intellectual and Developmental Disabilities”

The evaluation of students with intellectual disabilities

This evaluation process requires the presence of well-trained professionals and the knowledge and application of a series of steps and procedures already contemplated in the AAMR manual itself and by various recognized authors in the field.

a) The structure of the evaluation

The evaluation proposed by the 2002 system is based on what is known as evaluation structure . The structure of the evaluation is characterised by the following aspects:

The evaluation has three main functions: the diagnosis , the classification and the planning n of the necessary supports.
Each function has a different set of objectives, ranging from establishing service provision and research, to organizing information, to developing an individual support plan.
The selection of the most appropriate measures and instruments will depend on the role of evaluation and the specific objectives to be met.

The diagnosis

One of the purposes and functions of the definition, classification and support system is to determine the diagnosis of intellectual disability. The diagnosis of ID is made according to the threefold criteria: significant limitations in intellectual functioning, significant limitations in adaptive behavior, and age of onset.

The classification

The objectives of the classification include the grouping of persons for the financing of services, research, organisation of services and communication on certain selected characteristics. Classification systems can be used to meet the needs of researchers, clinicians and practitioners. Classification systems can be based on support intensity, etiology, and levels of intelligence or adaptive behavior.

The planning of supports

The purpose is to improve personal outcomes related to independence, relationships, contributions, school and community involvement, and personal well-being. Support assessment may have different relevance depending on whether it is conducted for ranking or support planning purposes. Support rating scales, self-reports, some assessment components, and the individual plan are measures for support planning.

(b) Diagnostic criteria

Conducting a diagnostic evaluation of intellectual disability requires adequate training and preparation, knowledge and use of certain issues related to diagnostic criteria and some considerations and precautions that must be taken into account in complex situations. Professionals must carry out an assessment of the intellectual level and adaptive behaviour , and establish the age of onset.

The evaluation of intelligence

The criterion used for the diagnosis of intellectual disability in relation to intellectual functioning is two standard deviations below the mean . The use of this criterion for a valid assessment requires knowledge and understanding of certain aspects:

The best way to understand intellectual functioning is through a general factor (g).
Appropriate standardized measures should reflect the individual’s social, linguistic and cultural background. Appropriate adaptations should be made for any motor or sensory limitations.
Psychometric instruments that assess intelligence work best when used with people whose scores are within two or three standard deviations from the mean; extreme scores are subject to greater measurement error.
The evaluation of intellectual functioning through intelligence tests runs the risk of misuse if possible measurement errors are not taken into account.

Adaptive behavior

It is the set of conceptual, social and practical skills that people learn to function in everyday life . It emphasizes the use or performance of relevant skills, rather than the acquisition of skills.

This means that limitations on adaptive behavior include lack of knowledge about how to perform these skills, when to use them, and other motivational factors that affect the expression of the skills.

Significant limitations in adaptive behavior are defined as performance that places at least two standard deviations below the mean in one of the three types of adaptive behavior or in an overall score on a standardized measure of conceptual, social, and practical skills.

The evaluation of this behavior should be done using standardized measures based on the general population that includes people with and without disabilities.

Guidelines to follow for assessing adaptive behavior:

Limitations on current functioning must be considered within the context of community settings typical of people of the same age and culture.
There is no single measure that fully assesses all aspects of adaptive behavior.
Because subscale scores correlate moderately, it must be assumed that there is a generalised deficit even if the score in a single dimension meets the criterion of two or more standard deviations below the mean.
Evaluation depends on understanding that an individual’s typical behavior requires information that goes beyond what can be observed in a formal evaluation situation.
A score for adaptive behavior should not be considered an accurate score. A 67% and 95% confidence margin should be applied for a true score.
Problematic behavior that is considered maladaptive is not a dimension or characteristic of adaptive behavior, although it may influence the acquisition and execution of adaptive behavior.
Adaptive behavior must be interpreted in relation to periods of development and within the context of the individual’s own culture.

Age of onset of intellectual disability

The period of the life cycle prior to adulthood is the diagnostic criterion of the 2002 definition. The age limit is set at 18, which corresponds to the time when the adult role is acquired.

This period is characterized by rapid changes in cognitive, social and practical skills.

(c) General considerations

Any diagnostic activity involves risk. There are particularly critical situations such as dual diagnosis (ID and mental illness), to individuals with ID and with optimal mild intellectual functioning.

They require special guidance to improve the accuracy, precision and integration of the diagnosis.

Four important guidelines should be considered when diagnosing people with complex situations:

Is there a correspondence between the measures used and the purposes of the diagnosis? The diagnosis of mental illness requires specific measures that are different from the assessment of intelligence and adaptive behavior.
Are the measures appropriate for the person? Is the age, cultural group, communication system, level of understanding language, sensory and motor limitations respected?
Is the person assessed in community living settings and is the role of the immediate environment integrated into the assessment? Is information from significant people included, is the assessment of community living conditions taken into account, is the person’s behaviour in the assessment situation compared to that in their usual settings?
Does the diagnostic evaluation take into account the possible limitations of the evaluation instruments?

The dual diagnosis

Mental disorders are more prevalent in the population with ID. Two factors complicate the dual diagnosis: diagnostic eclipse and problem behaviors.

The diagnostic eclipse occurs when all the problems and symptoms a person has are attributed to the DI.

Problematic behaviors that are evident at the time of the interview and in the assessment sessions can limit the accuracy of the diagnosis.

To make a good dual diagnosis, the following guidelines should be taken into account:

Collection of relevant information regarding the person from personal history, behavioural observations in everyday life environments, psychometric assessment and medical and biological evaluation.
Collection of community information from environmental assessments that include aversive situations, opportunities for sensory stimulation and the person’s prospects for change
Identifying potential causes of the behavior rather than reducing the cause to a supposed mental illness.

People with a slight or limited level of intellectual functioning: these people have limitations that are difficult to detect, especially those skills related to academic and social competence.

The following guidelines serve for an accurate diagnosis:

Assessment should focus on functional assessment systems, with a special emphasis on adaptive behavior.
The assessment of academic skills should identify knowledge acquisition and curricular competence.
The evaluation of social competence should be based on the interest in social perception, the generation of appropriate social strategies to solve problems and the knowledge that the person has of social schemes.

Retrospective diagnosis

It involves making a diagnosis of ID when it has not been made during the developmental period. Appropriate guidelines will have to be followed to ensure a proper diagnosis.

Diagnosis in sub-optimal evaluation situations

There are certain situations where determining the diagnosis of ID is complex and the use of formal assessment measures is difficult to implement.

These are individuals who have complex medical and behavioural conditions and situations where cultural diversity and/or linguistic factors may have an effect on the information needed for decision-making.

It is advisable to take into account the following guidelines:

Use multiple sources of information in data collection.
Show clearly that the data obtained correspond to the critical questions that have been asked.
Use assessment instruments that are sensitive to diversity and have acceptable psychometric properties.
Knowing and understanding the individual’s culture and language
Do not allow linguistic and cultural diversity to eclipse or minimize actual disability.

d) The use of clinical judgment

The clinical judgment is required as good practice in the field of disability. Its proper use allows for improved precision, accuracy and integration of the decisions and recommendations of professionals.

It is a special type of judgment that arises directly from a large amount of data and is based on a high level of clinical skill and experience.

It has three characteristics: it is systematic , formal (explicit and reasoned) and transparent .

It should not serve to justify rapid assessments, substitute the use of appropriate instruments or the lack of sufficient information.

There are four orientations that are crucial for making an accurate clinical judgment:

The professional must carry out a complete social history and match the data collected with the questions asked.
Comprehensive evaluation systems must be implemented.
The professional must work as a team to analyze the results of the evaluation and determine the supports needed.
The necessary supports should be included in an individualized plan and the results evaluated.

(e) Evaluation of support

The identification of support needs constitutes the main objective of the process of evaluation and diagnosis of ID.

Assessing the profile and intensity of support needed is a basic strategy for improving personal outcomes, promoting independence, relationships, contributions, school and community involvement and emotional well-being.

There are two ways to delimit the supports.

The processes that are carried out in evaluation and in the development of support plans for the definition and concretion of the support functions and activities, as well as the natural supports that the person will have at his/her disposal.
The use of support scales. The publication of the support intensity scale (EIA) and its adaptation to Catalan and Spanish means that we have a tool of great value and strong impact. The EIA is a multidimensional instrument developed to measure the level of practical support required by people with IDD.

This scale has three sections:

Section 1 . Support needs scale . Assesses 49 life activities grouped into 6 subscales: home life, community life, lifelong learning, employment, health and safety, and social activities. Support measures for each activity are examined in relation to frequency, time of daily support and type of support.

Section 2 . Supplementary protection and defence scale . It evaluates 8 activities related to issues that refer to self-defence, opportunities and access, the exercise of social responsibilities and help in the acquisition and expression of skills.

Section 3 . Exceptional behavioural and medical support needs . Assesses 15 medical conditions and 13 problem behaviours.

The scale of intensity of support for children is currently being developed. It assesses the intensity of supports in the following areas: home life, community and neighborhood, school participation, school learning, health and safety, self-defense, and exceptional medical and behavioral needs.

How to promote the development of students with intellectual disabilities?

For schools, the 2002 system has introduced two changes in the way they think and act:

The diagnostic process is directly related to the provision of support.
The emphasis is not on programs, but on the design and provision of individualized support.

This model assumes the perspective of special education as a system of supports rather than a place , and that the meaning of school-age supports is to provide access to the school curriculum, to foster the achievement of valuable personal outcomes and to enhance participation in typical school, social and community settings.

(a) An inclusive school environment

The basic principle is that students with IDD should have access to ordinary educational situations with additional aids and services that enable barriers to participation and learning to be overcome.

It matters how to establish a better fit between the person’s capabilities and the demands and opportunities of the environment in which they live, learn and socialize.

At the school level, greater attention needs to be paid to modifications and adaptations that facilitate participation and learning.

This functional approach to disability involves placing greater emphasis on supports . The task that the advisors must resolve is to identify and design, in an adjusted and adequate manner, the supports that allow success in school and in life.

The organization of support in the school stage must be done around some essential components. The development of an educational environment requires schools to adopt quality and diversity-sensitive organisational and teaching systems.

The educational approach incorporates a number of strategies at the school and classroom level. There are certain conditions that seem to have a positive effect on the improvement of schools and that enable them to cope with the processes of change and to provide more tailored attention to diversity.

These dimensions allow the school to advance in its goal of increasing opportunities for participation and learning for all students. They allow the functions and tasks of the advisor to be articulated around them.

Approaches that take into account teacher reflection and collaborative processes are sensitive to the development of inclusive cultures, policies and practices.

Keys to the correct inclusion of students with disabilities

There are a number of conditions to ensure that all students actively participate in teaching and learning activities.

Modify the nature and complexity of the contents curriculum
Diversify the teaching and learning processes
Adapt the demands and type of responses that you can promote to create a more inclusive educational environment in the classroom.

Promoting a safe climate and positive relationships between teachers and students is considered a critical aspect. Clear expectations and limits have to be defined and maintained that promote the acquisition of positive rules, behaviours and attitudes towards learning and school work.

It is important that teachers reflect on their own activity and share their reflections and proposals.

Adaptations to the physical environment facilitate students’ ability to participate in classroom learning activities.

(b) Access to the curriculum and universal learning design

There are several types and levels of access to the regular curriculum for students with IDD. The most significant are the strategies in the general area , and the use of universal learning design , and the individualized curriculum adaptations .

The universal design of learning represents a support system that makes it possible to overcome certain barriers to participation and learning for a significant number of learners.

Facilitating access to the curriculum requires ensuring that students actively participate in teaching and learning activities and that these are sufficiently stimulating and cognitively significant to support personal development.

Curricular materials often present physical, sensory, affective and cognitive barriers that limit access and participation.

Universal learning design is defined as “the design of instructional materials and activities that enable learning objectives to be achieved by individuals with wide differences in the ability to see, feel, speak, move, read, write, understand language, pay attention, organize, be engaged, and remember.

Adapting to students with special needs

Principles that facilitate the development and evaluation of educational materials for the education of students with IDD:

Equitable use : those who speak in a different language can use the materials. The materials are organized from different levels of cognitive taxonomy and present alternatives that seem similar.
Flexible use : the materials are characterized by multiple forms of representation, presentation and expression.
Simple and intuitive use : the materials are easy to use and avoid unnecessary difficulties. The instructions are clear and precise, and examples are given.
Perceptual information : the materials present the necessary information for the student; essential information is underlined and repetitions are included.
Error tolerance : students have sufficient time to respond, are given information to correct errors, can rectify previous responses, monitor their progress and practice for as long as necessary.
Reduced physical and cognitive effort : the materials present the information to be worked on in groups that can be taken to case in a reasonable space of time.

Universal design

Characteristics of universal learning design that facilitate access to information on academic content:

It provides multiple forms of representation and presentation.
They promote different forms of expression.
Facilitates multiple forms of participation

c) The organization of the provision of support in the classroom

In order to participate in classroom activities with their peers, students with DIyD require adaptations and supports that must be organized appropriately .

There is a three-phase model for carrying out this task. It serves for planning and implementing supports and adaptations in the classroom:

Identification of support needs.
Planning and implementation of supports and adaptations.
Evaluation of the provision of supports and adaptations.

The identification phase requires the collection of information about the student and the classroom. It is important to share information about the student and his or her characteristics and needs. It is important to know the activities and materials used. Sometimes it may be necessary to carry out direct observations of the classroom environment. The goal is to identify what kind of adaptations and supports the learner needs and in which curricular areas or school tasks.

The planning and implementation phase requires the responsible team of professionals to make decisions about how and who will develop and implement the identified adaptations and supports.

There are three types of adaptations :

Curricula : modify the content of what is taught. It represents modifying the level of difficulty of materials and activities, and reducing the quantity, number or complexity of objectives.
Instructional : modify how learning is taught and demonstrated. It may be necessary to vary teaching methods in order to facilitate and improve learning. Provide clear demonstrations, use specific strategies, develop study guides for textbooks, include more corrective feedback… It may be necessary to change the type of responses and demonstrations required of the student.
Alternatives : modify the learning objectives and activities Consideration may be given to whether the student needs alternative adaptations to ensure progress. These include introducing objectives and activities that are parallel to those carried out in the classroom.

This phase is usually carried out in two stages. One in which it is carried out at the beginning of the course and serves for the student to adapt to the daily activities and routines of the class and the school. And another is the planning and adaptation of the classroom work that is carried out throughout the course in the coordination meetings.

The monitoring and evaluation phase requires continuous and coordinated work to assess both the impact of the decisions taken regarding the type of adaptations and supports to be provided, and the progress of the student.

There should be a certain frequency of meetings to ensure the necessary changes that allow the student to actively participate in classroom activities and to progress according to the objectives proposed in his/her individual program.

(d) Learning certain skills

The functional model of intellectual disability involves placing greater emphasis on supports and on modifications and adaptations of the environment in order to improve individual functioning .

This should not detract from the development and progress of students with ID who acquire as many competencies and skills as possible.

A large majority can have access to the ordinary curricular contents and objectives.

Skills that enable access to and participation in other learning or educational activities and environments:

Foundational skills : Are those that open doors to people and facilitate access to other learning, meaningful activities and relevant environments. They provide the basis for interacting with people and information in a multicultural society. It is important that they learn skills that facilitate independence, relationships, contributions, school and community participation and personal well-being.
Self-directed learning strategies : students use learning strategies that allow them to plan, carry out and control school tasks, and to modify and regulate their own behaviour. The aim is to get students to participate actively in the educational process. The use of these strategies facilitates the development and learning of skills, favours school inclusion, improves self-determination and promotes student involvement and generalisation processes.
Self-determination : there is a close relationship between self-directed learning and self-determination. Self-determination is an educational outcome and represents the ability to act as the main causal agent in one’s own life and to select and make decisions regarding one’s quality of life that are free from unnecessary external influences and interference.It refers to the right of people to take control and make choices that impact on their lives.It includes components: skills to make choices, make decisions, solve problems, etc.
The social competence : is the result of the combination of adaptive behaviour, social skills and peer acceptance. Socially competent behaviour is important for satisfactory functioning in everyday environments.

The nature and extent of skills and relationships with peers have effects on self-esteem, intellectual development, academic performance and daily functioning.

It is convenient to identify the variables that can influence the relationships and social interactions between peers with and without disabilities, and establish strategies that promote positive relationships and adequate social competence.

Contributions to the education and quality of life of students with disabilities

(a) Evaluation of services

The presence of the culture of evaluation is little visible in our country in services for people with IDD. Especially in educational centers.

The Anglo-Saxon culture, for example, is associated with procedures for accountability to the authorities that finance services.

The educational administrations have proposed different initiatives but they have not been favourably received by the educational community.

The Spanish Federation for Persons with Intellectual Disabilities is committed to promoting the evaluation of the different services as an integral part of its quality plan.

The proposed model has been adopted by the FEAPS and has been designed to help professionals overcome the possible resistance referred to above. The control of the process is located in the centre itself and is aimed at improvement. It combines the advantages of self-evaluation with external evaluation, leaving the responsibility for decisions to the centres.

The model comprises three phases:

Self-assessment : professionals, ownership/management, families, students participate and concludes with a self-assessment report.
External evaluation : by some experts based on the report prepared by the centre and interviews with a sample of professionals, management, families and students. It is reflected in a final report that is sent to the centre.
Improvement plan : the centre itself prepares this plan based on the conclusions of the final report, contrasted with its own self-evaluation report.

Advantages of the model :

The evaluation process allows for individual and shared reflection on the organisational and educational practices of the centre based on the dimensions and quality indicators of the model.
The participation of families and students allows us to know what they value and what their level of satisfaction is.
The debate to reach a consensus on both the content of the self-evaluation report and the improvement plan allows the diagnosis to be fine-tuned and facilitates personal involvement in the search for solutions.
The improvement plan is a commitment to innovation and change.
The quality of the relationship between professionals and families: With few exceptions, the relationship between professionals and families is not easy. It is subject to different pressures, beliefs and expectations, distrust, organizational difficulties, etc. Which have contributed to an insurmountable barrier.

We can distinguish three patterns that obey three different ways of conceiving this relationship :

A power relationship based on expert knowledge: who knows what is happening to the person with ID, the causes and what should be done is the professional. It is a completely asymmetrical relationship that relegates parents to the role of mere implementers of what the professional indicates, without recognizing any contribution beyond answering some questions formulated by the professional.
Parents as co-therapists: a relationship based on an agreement that assumes that the parents must do at home what the professional does in the center.
Parents as partners: a change in culture and expectations in the relationship with families. It is recognized that not all the experience resides in the professionals; parents possess knowledge as valuable as that of the professionals.