Application of the World Health Organization (WHO) ICF and ICF-CY to communication disability

Revista de Logopedia, Foniatría y Audiología 2010, Vol. 30, No. 1, 34-47

Copyright 2010 AELFA ISSN: 0214-4603

Application of the World Health Organization (WHO) ICF and ICF-CY to communication disability

T. T. Threats

Department of Communication Sciences and Disorders Saint Louis University St. Louis, MO USA

Abstract The World Health Organization (WHO) has developed a framework and classification system that captures functional health status. The International Classification of Functioning, Disability, and Health (ICF) (2001) and the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY ) (2007) represent a significant advancement in the understanding of functional health and disabilities compared to WHO’s initial 1980 International Classification of Impairments, Disabilities, and Handicaps (ICIDH). The ICF and ICF-CY have been gaining acceptance across Europe in all health sectors and rehabilitation fields. This article describes the basics of the ICF and ICF-CY, and their possible clinical, educational, and research influences on the field of communication disorders. In addition, a discussion of European Union based initiatives using these classifications systems is presented, as well as recent ICF activities in Spain. Key words: Communication disorders; ICF.

Aplicación de la ICF y la ICF-CY desarrolladas por la Organización Mundial de la Salud (OMS) para el estudio de los trastornos de la comunicación La Organización Mundial de la Salud (OMS) ha desarrollado un sistema de clasificación que refleja el estado de salud funcional. La International Classification of Functioning, Disability, and Health (ICF) (2001) y la International Classification of FunctioCorrespondence: Travis T. Threats Department of Communication Sciences and Disorders Saint Louis University

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6800 Wydown Boulevard St Louis, MO 63105-3043 United States E-mail: [email protected]

ning, Disability, and Health for Children and Youth (ICF-CY) (2007) representan un avance significativo en la comprensión de la salud y la discapacidad funcional en comparación con la clasificación inicial International Classification of Impairments, Disabilities, and Handicaps (ICIDH) realizada por la OMS en 1980. La ICF y la ICF-CY han ido ganando aceptación en los sectores de salud y los campos de rehabilitación de toda Europa. Este artículo describe los fundamentos de la ICF y la ICF-CY, y su posible práctica clínica y educativa, además de influir en la investigación para el estudio de los trastornos de la comunicación. Además, abre un debate sobre las iniciativas de la Unión Europea ante estos sistemas de clasificación y las recientes actividades de la ICF presentadas en España. Palabras clave: Trastornos de la comunicación; ICF.

The World Health Organization (WHO) definition of health is «Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity» (WHO, 2006). This definition has relevance to communication disorders because the persons we serve are not «sick,» but often are not able to fully function in society. To address this aspect of health, in 1980 the World Health Organization (WHO) published the International Classification of Impairments, Disabilities, and Handicaps (ICIDH). The ICIDH represented a significant step in attempting to systematically look at functioning as an aspect of health. It however, had major limitations that prevented its widespread practical use. One significant limitation was its linear representations of health and disability, which was one of the objections of several interna40

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tional disability groups who thought that it represented a step backward in understanding disability (Hurst, 2003). It is important to state that the ICIDH was never voted on or adopted by WHO and was meant for discussion purposes only. In 1993, the WHO started to work on a revision that would incorporate the improvements suggested by its critics, as well as looking at other disability frameworks which had gained scientific respectability. The International Classification of Functioning, Disability, and Health (ICF) was voted on and endorsed the WHO in 2001 and was published that year. Although the ICF was originally conceived as covering from birth to death, it was soon concluded that it did not fully represent the developmental aspects of childhood, especially the birth to 5 population. To address the specific needs of children, a derived pediatric version was published in 2007 known as the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY). The ICF-CY represents children from birth to 17 years of age and the ICF thus represents persons 18 years and older. Unlike the ICIDH, the ICF and the ICF-CY involved professionals and disability advocates from around the world and also had extensive field testing. It also specified that there was a complex interaction among the different aspects of functioning, environmental, and personal factors. The ICF lists four main aims and four different possible applications for the ICF. The aims are listed as follows:

policy and services. This framework explicitly states that persons with disabilities should be viewed as equal partners in the functional health process and not merely as passive recipients of assistance. The ICF has two parts: functioning and disability, and contextual factors. The functioning and disability sections are described by the ICF as follows: 1. There are two chapters describing functioning and the basic body and structural levels, body functions and body structures. 2. The activities and participation component covers the complete range of domains denoting aspects of functioning from both an individual and a societal perspective. The contextual factors are defined as follows: 1. A list of environmental factors forms part of the contextual factors. Environmental factors have an impact on all components of functioning and disability and are organized from the individual’s most immediate environment to the general environment. 2. Personal factors are a component of contextual factors but are not classified in the ICF because of the large social and cultural variance associated with them. The chapters for ICF are stated below:

Broadly, the ICF seeks to develop a common language to improve functional health for all persons of the world. This common language and framework can be used to improve research on these populations as well as develop more meaningful social 41

Body structures Chapter 1. Structures of the nervous system. Chapter 2. The eye, ear and related structures. Chapter 3. Structures involved in voice and speech. Chapter 4. Structures of the cardiovascular, immunological and respiratory systems. Chapter 5. Structures related to the digestive, metabolic and endocrine systems. Chapter 6. Structures related to the genitourinary and reproductive system. Chapter 7. Structures related to movement. Chapter 8. Skin and related structures. Body functions Chapter 1. Mental functions. Chapter 2. Sensory functions and pain.

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1. To provide a scientific basis for understanding and studying health and health-related states, outcomes and determinants. 2. To establish a common language for describing health and health-related states in order to improve communication between different users, such as health care workers, researchers, policymakers and the public, including people with disabilities. 3. To permit comparison of data across countries, health care disciplines, services and time. 4. To provide a systematic coding scheme for health information systems.

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Chapter 3. Voice and speech functions. Chapter 4. Functions of the cardiovascular, hematological, immunological and respiratory systems. Chapter 5. Functions of the digestive, metabolic and endocrine systems. Chapter 6. Genitourinary and reproductive functions. Chapter 7. Neuromusculoskeletal and movementrelated functions. Chapter 8. Functions of the skin and related structures. Activities and participation Chapter 1. Learning and applying knowledge. Chapter 2. General tasks and demands. Chapter 3. Communication. Chapter 4. Mobility. Chapter 5. Self-care. Chapter 6. Domestic life. Chapter 7. Interpersonal interactions and relationships. Chapter 8. Major life areas. Chapter 9. Community, social and civic life. Environmental factors

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Chapter 1. Products and technology. Chapter 2. Natural environment and humanmade changes to environment. Chapter 3. Support and relationships. Chapter 4. Attitudes. Chapter 5. Services, systems and policies.

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Aspects of communication and the possible consequences of communication disability are well represented in the ICF including specific chapters on voice and speech and communication. As can be seen by looking at the different chapters, communication would be an important aspect of more than just the chapters directly pertaining to communication. For example, communication would play a role in the chapters on interpersonal interactions, and community and social life. Although personal factors are not coded by the ICF, their use in the framework is meant to indicate that each client is unique and not just a sum of all of their limitations. Personal factors include the following: sex, race, age, gender, other health conditions, lifestyle, habits, social background,

coping styles, past life experiences, education, profession, upbringing, and personality.

The ICF states that no ICF codes are to be used without qualifiers. The qualifiers represent the degree of impairment or restriction for a given specific function or behavior. The use of the qualifiers is mandatory to prevent the codes from simply being used as labels. The ICF thus requires that an assessment be performed in order to provide a given behavior a code. Qualifiers denote the severity of the problem and are represented by one or more numbers following a decimal point. The qualifiers used in the ICF are as follows: xxx.0 xxx.1 xxx.2 xxx.3 xxx.4 xxx.8 xxx.9

NO problem (none, absent, negligible) MILD problem (slight, low…) MODERATE (medium, fair) SEVERE (high, extreme…) COMPLETE (total…) Not specified Not applicable

0-4% 2-24% 25-49% 50-95% 96-100%

The qualifiers represent from normal to complete or profound impairment or limitation. The first number after the separator is a universal qualifier that ranges from 0 (no problem) to 4 (complete or profound problem). Body function items have one qualifier after the decimal point to indicate the severity of the dysfunction on this 0-4 scale. For example, a person’s voice might be rated using b3100 «production of voice» as b3100.2 which would indicate a moderate problem with this aspect of speaking. One primary «performance» qualifier and two «capacity» qualifiers modify the activity/participation codes. The primary «performance» qualifier describes how a person executes a task or an action in his or her actual life. The «capacity» qualifiers describe an individual’s ability to execute a task or an action in a standardized or uniform environment (e.g. clinic room). For «conversation» (d350), a ICF code rating of 350.321 would mean a severe restriction in the client’s demonstrated ability to have conversations in his or her current natural environment; a moderate restriction with the clinician in the therapy room with no overt assistance from the clinician during an assessment; and a mild restriction with a clinician utilizing highly facilitative techniques such as using multiple cues. 42

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The environmental factors codes can denote both barriers and facilitators to persons’ participation in relevant life functions using a 0.4 to +4 qualifier system. For example, in rating the employer of someone with a disability, the code e330 «persons in position of authority» could be used. This Environmental Factor could be ranked as e330.3 indicating that the employer was a severe barrier to successful adaptation to the workplace, or as e330.+3 indicating that the employer was a substantial facilitator to successful adaptation to the workplace.

ICF for children and youth The ICF-CY uses the same philosophical framework and structure as the ICF and covers children from age 0 to 17 years old. In fact, all of the ICF text is incorporated into the body of the ICF-CY, as well as almost every ICF code. The main additions are 1) additional introduction materials and examples, 2) an additional option of using the qualifiers to indicate developmental delay, and 3) many new codes to reflect the maturation and characteristics of childhood. The co-chairs for the development of the ICF-CY were Rune Simeonsson, Ph.D., a USA psychologist, and Matilde Leornardi, M.D., an Italian pediatric neurologist. They formed a workgroup of pediatric experts from Sweden, Switzerland, USA, the Netherlands, and Italy. This work group collaborated with international scholars from Argentina, Australia, Brazil, Canada, China, Denmark, Egypt, Finland, Ghana, France, Kuwait, Iceland, Italy, Macedonia, Peru, Portugal, Quebec, South Africa, Spain, Sweden, Thailand, the United States, and Zambia to look at relevant scientific and conceptual sources in the development of the ICF-CY (WHO, 2007). The scholars involved in these collaborations included those with expertise in classification systems, disability studies, psychology, educational psychology, early childhood development, occupational therapy, physical therapy, speech-language pathology, public health, public policy, and rehabilitation science. In addition, the ICFCY was extensively field tested in Italy, Japan, Sweden, and USA. A leading source of funding for this effort was the United Nations Educational, Scientific and Cultural Organization (UNESCO). UNESCO is a specialized agency of the United Nations whose goal is «[…] to build peace in the minds of men.» It aims to do this through the fields of education, science, culture and 43

communication with a focus on ethical issues of humankind, with the overreaching ethical value of respect for all people and their cultures. The national ministries of Italy and Sweden were both important in their support for the field trials of the ICFCY. The ICF-CY was officially launched in October 2007 in Venice, Italy at the WHO conference on Children Health, Disability and ICF-CY. The ICF-CY workgroup designed this classification to be in concert with international standards concerning the human rights of children, including the Salamanca Statement for Framework for Action on Special Needs Education (1994). This Salamanca Statement was adopted at the World Conference on Special Needs Education: Access and Quality in Salamanca, Spain. This conference had over 300 participants representing 92 governments and 25 international organizations. It was arranged by the United Nations Educational, Scientific, and Cultural Organization (UNESCO) and the Ministry of Science and Education in Spain. This statement is considered a cardinal document and continues to be quoted worldwide. Among the aspirations of this document are the following: 1) that children with disabilities have the right to extra assistance they need to reach their full potential and to participate in all aspects of their culture; 2) that all children including those with special needs be given the right to free and compulsory education starting with early education; and 3) that children with disabilities, in accordance with their abilities, be given a say in their education and specialized intervention. A total of 237 new codes were added to the ICFCY that were not in the ICF, 168 of which are activities and participation codes (Lollar and Simeonsson, 2006). There are a number of new codes with relevance to the field of communication disorders including «Responding to human voice» (d3100); «Combining words into phrases» (d1331); «Acquiring syntax» (d1332); «Learning through actions and playing» (d131); and «Pre-school life and related activities (d816); Special education and training services, systems and policies» (e586); «Indicating a need for eating» (d5500); and «Comprehending simple spoken messages» (d3101).

Clinical implications of the use of the ICF and ICF-CY The use of the ICF and ICF-CY poses several challenges to clinical thinking. The broad philosophical

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tenet of the ICF is that what is most important is the functioning of our clients in the real world. This is not a novel concept for the field. However, using a single classification system across all communication, cognitive, and swallowing disorders to document disability is not only a novel one but one with significant consequences for how the rehabilitation fields operate and view their vocations. The ICF states that all persons are to be viewed holistically and that their uniqueness as individuals honored. However, much of clinical training in the medical model dictates that clinicians evaluate clients objectively and try to determine the nature and severity of specific deficits. Clinical professions describe the evaluation as a diagnosis, which means «a device or substance used for the analysis or detection of diseases or other medical conditions.» Speech-language pathologists state they are making a «communication disorder diagnosis.» This medical model of thinking dictates that clinicians determine the different aspects of the presenting problems. Once clinicians understand all the presenting problems they design any necessary specific treatment techniques. When all of these techniques are successful, clients are expected to be able to function better in their everyday lives. In a description of a fictional, yet representative, child with a speech-language disorder, McLeod and Threats describe the following to illustrate this point: «Consider the following case-study of a 6-year-old child, Sam. He has an interdental lisp (b320), mild expressive (b16710) and receptive (b16700) language impairment, and a mild stutter (b330). He is a little behind his peers in learning to read (d140, d166); it has recently been suggested that he has a mild attention deficit disorder (b140). Although each of these separate components are considered to be mild at the body functions level, combined they can contribute to problems at the level of activities and participation in education (d820), play (d880), and sport (d920). There are a number of important environmental factors in Sam’s life that also contribute to his participation. Sam is in a regular class at school (e585) and Sam’s teacher has implemented a remedial reading programme (e586). He is the second son of single mother (who is divorced) (e310). His mother works long hours, yet receives a low income (d8700). His grandmother (e315) often takes care of the children while their mother is at work. Sam has a few close friends (e320), but others at school tease him about

his speech (e425). Sam’s brother (e310) goes to the same school and protects and supports (e410) him in the playground. Sam lives in a small rural town (e2151) that has intermittent SLP services (e580). These environmental factors are facilitators and barriers, impacting on Sam’s ability to participate fully in life and influencing his ability to receive appropriate health and education services. His environmental factors may also have a cyclical effect on personal factors in determining his outlook on life. It is in understanding the complex interaction of the ICF-CY components that appropriate health and education goals can be realized for Sam.» (McLeod and Threats, 2008). In the above example, if Sam were evaluated using the typical medical model, his impairments (lisp, dysfluency, receptive/expressive language disorder) would be looked at separately and individual treatment targets set. However, looking at his body function impairments, the resulting activity/participation areas, and his environmental and personal factors produces a much richer picture of this child and his functioning. In reality, clients with communication and swallowing disorders are more than the sum of their parts. In the ICF framework, one starts with the person as a whole to determine the life participation successes and restrictions. From there, all the factors that influence this functioning are ascertained. Elman, Simmons-Mackie and Threats (2003) refer to this approach with aphasia therapy as «beginning at the end.» In this approach, one does not assume that working on the specific deficits will eventually generalize to the persons’ actual lives. The activities/participation goals are first established and then the clinicians work backward to find the appropriate specific therapy tasks that could reasonably lead to the end goals. The body function codes of the ICF represent the closest to what is usually evaluated and targeted with persons with communication disorders. However, even at the body function level, the ICF often contains codes such as «articulation» that are very broad. Thus, specific difficulties with /r/ versus /s/ cannot be coded using the ICF. This «articulation» code refers to overall intelligibility and thus any number of factors may effect how the behavior is realized. A client could improve significantly on the articulation of a specific phoneme such as /f/ but still not evidence improvements in the articulation code of the ICF. Thus, even at the body function level, the 44

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clinicians are required to think past specific therapy tasks typically done during intervention, to consider «beginning at the end.» The medical model’s primary focus is at the body function level and consequently most assessments are the developed and utilized at this level. The use of the ICF challenges clinicians and researchers to develop activity/participation and contextual factual measures to enable this broader disability view. Both areas have limited research to guide clinicians on the reliable and valid measures for them. This paucity of research exists despite that all clinicians know the importance of these areas to the quality of life for clients. Body function and activities/participation components of the ICF are both documented using qualifiers ranging from 0 (WNL) to 4 (profound). The ICF states that codes cannot be used without these qualifiers. The WHO does not want the ICF codes to merely become labels and to make sure the code is description of functioning. For example, instead of just saying that someone was difficulty with conversation, the clinician would have to say what level of difficulty they are experiencing. Since «conversation» is an activity/participation code, the clinician would also have to provide a severity rating for their ability to have a conversation in the clinic without and with cues, as well as how performing this behavior in their natural environments. One main difficulty with the qualifiers is that clinicians do not reliability and validity use the words denoting severity. Thus, more research needs to be done so that these terms have more universal agreement among clinicians. This lack of inter-rater agreement could have significant negative repercussions in the successful use of the ICF, especially in using the ICF for treatment outcomes. The use of qualifiers is not a flaw in the design of the ICF but rather indicates a limitation across many clinical fields. As in other areas, the ICF challenges clinical and researchers to further develop methods of describing the functioning of clients. Concerning this issue, Threats writes: «This distinction among the qualifiers is more than merely an academic question. If the ICF is to be used in recording clinical outcomes or even more so in reimbursement plans, then these distinctions become paramount because many of our clients may move only one severity rating from the beginning to the termination of a formal therapy. For example, a person with moderate dysfluen45

cies may have what is judged to be mild dysfluencies after successful completion of intervention. The person with dysarthria may improve from severely impaired production of speech to moderately impaired production, which might be enough with partner training and use of contextual cues to significantly reduce the extent of frustration with communication. Thus, if one cannot reliably distinguish between two adjacent severity levels, then it may be difficult to show long term outcomes from intervention» (Threats, 2008). The environmental factors qualifiers provide an additional challenge. For this component, there are both positive and negative ratings. The ratings go from 0.4 (complete barrier) to +4 (complete facilitator). All clinicians intuitively know that clients function best with a supportive environment. However, in traditional clinical training, there are only ratings of the identified clients. Thus, clinicians may know the importance of environmental factors but often have no way of objectively measuring their impacts. Once again the ICF challenges clinical fields to improved clinical research in an area. The ICF is not an assessment tool. However, as can be seen from this discussion of the qualifiers, it does attempt to influence the content and nature of assessment. One could argue that the very choice of what is coded in the ICF seeks to influence assessment. The WHO is not attempting to dictate the specifics of how evaluations are done. The ICF states that it is a language which can be adapted for its users for whatever specific needs. Thus, an assessment could be made that is compatible with the ICF philosophical structure and thus could easily be mapped onto specific ICF codes. If the ICF were adopted universally in clinical practice, assessments tools would be judged against how reliable and valid their contents are for coding specific ICF codes. The evaluation of personal factors presents the clinician with unique challenges. First, Personal Factors are not coded in the ICF although they are included in the framework of the ICF. It is thus unclear how to judge these factors and their influence on functioning. However, there is no doubt that persons with a communication and/or swallowing disabilities have demographic, lifestyle, and personality characteristics that will influence their reaction to the disability, as well as their response to intervention. Unlike walking or some other skill that would not vary widely in execution from person to person,

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communication is highly personable, idiosyncratic, and widely variable across settings. Ultimately what clients most value and want from therapeutic intervention is influenced primarily by personal factors. The ICF seeks to influence clinicians to be more patient centered in all their interactions. Thus, the most important decisions, such as what should be goals of therapy, would fully incorporate from the beginning the clients’ and/or families’ aspirations. The ICF states that including the client and their families is a clinical ethical concern. Specifically, the ICF states that persons with disabilities and their families or caregivers must be regarded as partners in the assessment and intervention process, and that not doing so is unethical practice. It challenges the traditional medical model which has the professional make all of the decisions for the person. In this viewpoint, deciding for persons with disabilities and their families denies their full humanity and thus the ability to make their own decisions about their future.

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Research implications of the ICF and ICF-CY

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There is poor epidemiology of communication disorders even in countries which have extensive services for this population. In addition, there is little consistency between nations which limits the ability to make international comparisons of disability rates. The use of the ICF could improve the field of disability epidemiology overall and especially could be beneficial to communication disorders because of the presence of numerous codes representing communication (Mulhorn and Threats, 2008). Having an accurate count of the persons with communication disabilities is crucial for several reasons. One, it can help support additional government resources for this population. Two, it can demonstrate the connection between specific health states and risk for communication disorders. When a given health state does not cause death or overt illness, it may not receive as full attention from public health agencies. However, many of the etiologies for communication disorders such as lead paint in buildings may instead cause disability. Demonstrating this link could argue for more resources to tackle primary causes of communication disorders. Third, improved disability epidemiology of communication disorders could track public health initiatives to improve the functioning of this population.

The comprehensive shared framework of the ICF can also improve the quality and quantity of relevant clinical research. Stucki and Grimby (2007) and Stucki, Reinhardt and Grimby (2007) argue that the ICF could be used to restructure how clinical intervention research is done by looking research paradigms ranging from individual clinical trials to research on overall systems of delivery. Worrall and Hickson (2008) take these principles and apply them to enhancing research on communication disability. There is a growing international emphasis on evidence based practice. Sackett, Straus, Richardson and Haynes (2000), state that there are three main components to evidence based practice (EBP): 1) clinical expertise, 2) best current research, and 3) client values and preferences. The ICF framework and philosophy are in concert with and can enhance the realization of these components. Both the ICF and EBP place the patient or client at the center of all efforts. In the ICF, it states that persons with disability should be included in decisions about research and the ability to contribute to what should be the research agenda regarding functional health issues. Scholars have provided considerable delineation of the types of research that can contribute to EBP, including often a ranking scale of highest level of evidence to lower levels of evidence. While this approach is beneficial evaluating the mechanics of how to conduct and evaluate research, these approaches do not point the researcher in the direction of what they should be studying. In other words, there needs to be a framework or philosophy to guide what areas of study need additional research. Using the ICF, Threats (2002) states that the following need more research: 1) the relationship between body function/body structure and activity/participation behaviors; 2) the reliable and valid measurement of activity/participation constructs, especially the performance qualifiers; 3) the reliable and valid assessment of the effects of environmental factors in the rehabilitation process; 4) increased attention to the effects of ICF constructs on quality of life; and 5) increased attention of the role of personal factors in the rehabilitation process.

Evidence based practice and the ICF An often under appreciated aspect of evidence based practice is the interaction between research 46

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and clinical expertise. As seen with the examples from the use of the ICF for both research and clinical use, clinical researchers and therapists would both best be served by working closely together. One of the reasons for the disconnection between clinicians and researchers is a lack of a common framework and language. Thus, researchers are not communicating effectively with clinicians and clinicians often find little clinical relevance in researchers published works. Researchers need to be more responsive to the needs of clinicians in their choice of research topics and approaches. Clinicians need to work to be more scientific in their thinking about their clients. It is hoped that both using the ICF will facilitate the needed dialogue to produce this needed symbiotic relationship. Clinicians and clinical researchers should all be united in trying to answer the major questions that challenge all therapists. The same areas that can help guide the research for communication disorders articulated by Threats (2002) can also contribute towards more comprehensive view of assessment and intervention. Thus, both clinician and researchers should be asking the following questions: 1) how can working on a specific aspect of speech or language (body function) affect the real life functioning (participation)?; 2) what are reliable and valid assessments, especially of the real life functioning of clients?; 3) how can the environment be modified to help clients and how can one measure these environmental changes?; 4) how does my work with clients increase their quality of life?, and 5) what aspects of client’s culture or personality will affect the assessment and intervention progress and how can intervention be adapted incorporating these personal factors?

Educational implications of the use of the ICF and ICF-CY Although people often think of concepts such as «government» and «culture» as distinct almost breathing living entities, governments and cultures are determined by the people. Thus, education can be a powerful tool for changing the attitudes of persons in positions of authority in the government, education, and healthcare, and also for cultural values for the general population. The WHO developed the ICF to help contribute toward a better and more just world for persons with disabilities. 47

The educational and health professions require significant training. However, sometimes that training can obscure the larger picture of our clients in society. The ICF is a general framework and a system of giving broad summary measures of functioning. This characteristic makes it more accessible to all professionals, as well as non professionals and persons with disabilities. The ICF can assist with the professional training of educational and health professions for the need for working in a fully collaborative manner with each other. Looking at activity/participation component of the ICF, there are codes for behaviors such as attending church services. These are the quality of life-related behaviors that clients come to health professionals for help. Few of these global behaviors can be achieved through the intervention of only one profession. The ethical guidelines of the ICF would also be important for the education of health professionals. These guidelines can introduce to students the importance of including the client and their family as an integral part of the rehabilitation team, as well as the crucial point of not reducing them to a list of diseases and deficits. The education of researchers concerning the ICF will be crucial for future research using the ICF (Doyle, Skarkis-Doyle, 2008). Many aspects of the ICF cannot be studied using conventional assessment and intervention practices, and thus new ones need to be developed. These new assessment techniques must, however, still demonstrate reliability and validity. In the academic setting, having a narrow focus is often expected of the researcher. As a result, publications and presentations tend to use quantitative research methods on highly specific populations that also do not have any complicating health or personal factors. The assumption inherent in this approach is that the culminate knowledge on very specific disorders will eventually lead to an understanding of complex disorders. However, people with communication disorders are more than simply the sum of their parts. This traditional research approach also often does not acknowledge the role of the environment or personal factors, or look at quality of life issues. Even when these roles and issues are understood by researchers in communication disorders, there are limited number of research paradigms and statistical analysis to use to study these areas. The traditional approach to research can hinder research concerning more creative and life participation oriented assessments and interventions. Thus, it is hoped that the use of

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the ICF in doctoral training programs in the field would spur the development of scholars who think more broadly in terms of research questions and paradigms.

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The ICF has been internationally used by researchers and clinicians in speech-language pathology and audiology. This author has interacted with communication disorders professionals using the ICF from the United States, Australia, United Kingdom, Brazil, Chile, Japan, New Zealand, Canada, Portugal, Slovenia, Germany, Greece, Finland, Denmark, Spain, Kenya, the United Kingdom, South Africa, Sweden, Hong Kong, and India. The American Speech-Language-Hearing Association (ASHA), Speech Pathology Australia (SPA) and the Royal College of Speech Therapists (UK) use the ICF in their scope of practice documents. There is growing scholarly work with the ICF concerning a wide range of communication disorders (Paul, Frattali, Holland, Thompson, Caperton and Slater, 2004; Yaruss and Quesal, 2004, Simmons-Mackie, 2004; Simmons-Mackie, Threats, and Kagan, 2005; Ross and Wertz, 2006; Vickers, 2004; Brobeck, 2004; Pimentel, Englebret and Murphy, 2005; Brush, Threats and Calkins, 2003; Isaki and Turkstra, 2002; Ylvisaker, Hanks, Johnson-Greene, 2002; Feeney and Ylvisaker, 2003; Threats, 2003; Fey, Long and Finestack, 2003;Larkins, Worrall and Hickson, 2004; Howe, Worrall and Hickson, 2004; Donaldson, N., Worrall, L., and Hickson, L., 2004; McCooey,-O’Halloran, Worrall, L., Hickson, L., 2004; O’Halloran, Worrall, Code, Toffolo, Hickson, L. 2004; Worrall, L., and Hickson, L., 2003; Davidson, Worrall and Hickson, 2003; Worrall, McCooey, Davidson, Larkins and Hickson, 2002; Hickson and Worrall, 2001; McLeod, 2006; McLeod, 2004; John, Hughes, Enderby, 2002; John, 2002; Marshall, 2004; Hamerton, 2004; Garcia, Hooper, Doyle, Eadie and Kagan, 2002; Kagan, Elman, Simmons-Mackie, 2002; Eadie, 2003, Eadie, 2006; Hooper, 2004; Bornman, 2004; Ma and Yiu, 2001; Ma, 2003; Law, 2004). In the last few years, two internationally respected journals in communication disorders have had special dedicated issues concerning the use of the ICF. Between the two journals, authors from the United States, Canada, South Africa, United Kingdom,

Australia, Hong Kong, and New Zealand were included. In an 2007 issue of the journal Seminars in Speech and Language, the use of the ICF with specific communication disorders was addressed and included articles pertaining to aphasia (Simmons-Mackie and Kagan, 2007), child articulation/phonological disorders (McLeod and McCormack, 2007), child language disorders (Westby, 2007), dementia (Hopper, 2007), acquired hearing disorders (Hickson and Scarinci, 2007), laryngectomy (Eadie, 2007), motor speech disorders (Dykstra, Hakel and Adams, 2007), fluency disorders (Yaruss, 2007), dysphagia (Threats, 2007), cognitive communication disorders (Larkins, 2007), and voice disorders (Ma, Yiu and Verdolini Abbott, 2007). In 2008, the journal International Journal of Speech-Language Pathology published a special double issue that addressed the various components and applications of the ICF in relationship to communication disorders, which addressed the following: body functions/structures (McCormack and Worrall, 2008), activities and participation (O’Halloran and Larkins, 2008), contextual Factors (Howe, 2008), quality of life (Cruice, 2008), clinical practice (Threats, 2008), research (Worrall and Hickson, 2008), doctoral level education (Doyle and Skarakis-Doyle), professional policy (Brown and Hasselkus), epidemiology (Mulhorn and Threats, 2008), and the ICF for Children and Youth (McLeod and Threats, 2008) These two journal issues represent a broad survey of the state of the art of the use of the ICF in the field of communication disorder.

Application of ICF and ICF-CY in Europe The ICF and ICF-CY have both been widely discussed in academic health and disability institutions in Europe. One primary European collaboration on the use of the ICF was via the Measuring Health and Disability In Europe (MHADIE). MHADIE was a funded project by the European Union that operated between 2005 and 2008, under the Sixth Framework Programme Thematic Priority Scientific Support to Policies. Their charge was to study and demonstrate the feasibility and utility of the ICF and ICF-CY for the measurement and understanding of disability across Europe. MHADIE’s membership includes clinicians and researchers from 10 countries: Spain, Italy, Slovenia, Belguim, Switzerland, Sweden, Rumania, Ireland, Germany, Czech Republic. MHDAIE studied 48

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the use of the ICF for clinical and research use, as well as for national statistical surveys and public policy. In Spain, the main collaborating institution was Institut Municipal d’Investigacio Medica (IMAS). MHADIE studied several different chronic diseases to determine if the ICF would be feasible and useful to characterize these diseases in functional health and disability terms. The diseases they studied that are etiologies of communication disorders were Parkinson disease, multiple sclerosis, traumatic brain injury, and stroke. MHADIE researchers also studied a population of children from 0 to age 6 using the ICF-CY and concluded that its use could profoundly improve the assessment and subsequent intervention for children (MHADIE, 2008). MDADIE hopes that their efforts will lead the adoption of the ICF and ICF-CY across all members of the European Union. The group has written policy recommendations and guidelines designed for use in health disability policy planning and development across the European Union. In 2008 at a conference of the European Parliament in Brussels, MDADIE presented their formal report that provided general, statistical, educational and clinical recommendations to the European Union regarding the use of the ICF and ICF-CY. The key health setting recommendations made were as follows: 1. Diagnoses alone are not sufficient in clinical settings to guide care and management. MHADIE researchers recommend that the ICF model and its related instruments be used as complementary tools for 1) defining person’s functioning, 2) identifying patient’s needs and planning interventions, and 3) evaluating clinical outcomes. 2. Since MHADIE data have shown that the ICF notions of the patient’s capacity and performance play a crucial role in explaining the impact of a health condition on the person’s life, in a reliable and valid manner, MHADIE researchers recommend that ICF-based clinical instruments be developed for routine clinical use in order to assess both capacity and performance. 3. MHADIE research shows that environmental factors have an influence on patient’s performance independent of their capacity, MHADIE researchers therefore recommend that these factors be taken into account when assessing and planning clinical as well as social interventions. 49

4. MHADIE researchers recommend that the impact of disability must be assessed, not merely at the clinical level, but also at the level of the person’s social and economic participation —in the assess— ment of, for example, performance at work or in other life contexts as MHADIE project proves that information about interpersonal interactions, major life areas and community and social life, can be successfully collected and evaluated. 5. MHADIE researchers recommend that, in the clinical setting, the ICF model be used as a common language across levels of care and for different intervention purposes (prevention, treatment, rehabilitation, public health); ICF is useful as a common language across professions and for collecting information for multidisciplinary treatment. 6. We recommend the use of the ICF for understanding the scope and nature of the impact of a health condition on the life of a person in domains such as education or work. The key educational recommendations were: 1. MHADIE researchers recommend the ICF framework as a useful structure for collecting data relevant to developing eligibility criteria for educational services for children and youth. 2. Across the education sector, we recommend that the consistent and valid understanding of disability provided by the ICF be used to understand the embeddedness of disability categories and the process by which disability categories of special needs are created and applied. 3. MHADIE has shown that MAP-EP© (Matrix for Analysis of Problems in Educational Planning), developed by MHADIE researchers, is a useful and valid protocol for linking clinical, administrative and survey data to components in the education sector, and we recommend to use it as a guide to identify the information that needs to be collected for educational planning. 4. MHADIE research highlights the importance of including the 0-6 years children subgroups in population surveys for prevention policies. Given this, MHADIE researchers recommend that the ICF-CY (ICF Children and Youth version) be used to collect these data. 5. We recommend that new instruments and tools, that more reliably capture the child’s participation

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and complexities of educational participation in school, be developed. 6. MHADIE researchers recommend that the social impact, resulting from outcome evaluation of education policies, be collected along with education’s outcome indicators for children with disabilities (MHADIE, 2008).

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As described in the previous section, Spain has been central to the study of the ICF and the ICF-CY via its work with MHADIE. Spanish researchers have also been crucial to another international effort, the development of ICF core sets. ICF core sets are lists of ICF codes designed to provide a typical constellation of impairments and restrictions for specific diseases or conditions. One of the two main goals for the development of these sets is to make the ICF more practical to use in clinical practice and research. The entire ICF manual can seem daunting at first. With thousands of codes, where does one begin to describe a given person with a given disorder? The ICF is more approachable and manageable if for a given disorders, say a stroke or arthritis, there is a predetermined list of the ICF codes most likely to be affected by this disease. ICF core sets have also been developed for settings such as early post acute stroke rehabilitation. The second reason for the development of ICF codes is make a direct link between the ICF and the standard and widely used WHO publication the International Classification of Diseases (ICD) (WHO, 1992). WHO’s aspiration is to have the ICD and ICF be viewed and used as an complementary pair in order to comprehensively describe the health of individuals and populations. The ICF core sets are a concrete method to make this connection. The development of these core sets has been lead by the ICF Research Branch at the Institute for Health and Rehabilitation Sciences, Ludwig-Maximilian University in Munich, Germany. The group leader for the development of the core sets for chronic conditions is a native of Spain. Alarcos Cieza, Ph.D. is a senior scientist at this ICF Research Branch. Dr. Cieza received a degree in psychology from Pontificia Comillas in Madrid, Spain, and later obtained her Ph.D. in Germany in neuropsychology and health related quality of life. The ICF core sets completed or in process that are relevant to the field of communication disorders are

spinal cord injury, multiple sclerosis, stroke, dementia, cerebral palsy, head and neck cancer, and traumatic brain injury. Speech-language pathologists in Spain are currently working on the ICF core sets for multiple sclerosis and traumatic brain injury (Renon, personal communication, 2009). For the ICF core set on traumatic brain injury, the Institute Guttman, Hospital for Neurorehabilitation in Spain is the lead developer. These Spanish researchers have in their team scholars from University of Malaya in Malaysia, the Italian Brain Injury Network, the Republic of Slovenia Institute for Rehabilitation, the Ulleval University Hospital from Norway, and the Royal Rehabilitation Centre Sydney in Australia (ICF Branch of WHO- DIMDI, 2009). The primary paper describing this project has been published in the journal Neurorehabilitation and Neural Repair (Bernabeu, Laxe, Lopez, Stucki, Ward, Barnes, Kostanjsek, Reed, Tate, Whyte, Zasler, Cieza, 2009). The Santander WHO Collaborating Centre of Spain has been active in studying and promoting the use of the ICF. The Santander WHO Collaborating Center is Spain’s primary clearinghouse for all WHO activities in Spain. In 2002, they undertook a major effort for the dissemination and training of the use of the ICF. They have been especially active working with the fields of psychiatry and neurology. In that year, the first 10,000 editions of the Spanish version of the ICF were printed and distributed to Spain and other Spanish speaking countries. The Santander center developed a training program for the ICF called «Training the Teachers,» which involved 40 national groups of trainers in Spain. Their plan at the time was to complete 80 training courses on the ICF targeting a 1,000 experts on disability throughout Spain. The center also developed a CD to facilitate this training (Vazquez-Barquero, 2002).

Conclusions The ICF and the ICF-CY can be powerful tools for research, clinical use, social and public policy and advocacy, and education. They are both a philosophical approach to functional health problems and a practical classification system. Many believe that the classification system does not fully represent the spirit of what the WHO intends. This is a legitimate criticism if one believes that the ICF and ICF-CY can change the world by simply existing. However, the ICF and ICF-CY provide 50

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a framework that can be adapted internationally by caring and dedicated professionals, community workers, government and health agencies, and persons with disabilities and their families to advance thinking of how to best help those with disabilities live their life to the fullest and become integral members of their societies. These classification systems are a language to be used to produce innovative programs and to also one day improve the classification system itself. The field of communication disorders can especially benefit from the use of the ICF and ICF-CY because they both promote communication as a basic health right. They can also improve the epidemiology of communication disorders, and guide better research and clinical efforts. The interdisciplinary nature of the ICF is also crucial to demonstrating how central communication is to all of functioning. Europe and Spain have demonstrated leadership in the use of the ICF. They are thus in position to use the ICF to improve the functioning of persons with disabilities. To end with the definition of health by the WHO, persons receiving intervention for communication disorders should enjoy as much as is possible complete physical, mental, and social well being. The ICF can be a helpful tool to achieve this goal, but it will take societal and government changes to actually achieve this goal.

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patients with communication disability in the acute hospital setting, using the ICF. Journal of Medical Speech Language Pathology. McCormack, J. and Worrall, L. (2008). The ICF Body Functions and Structures related to speech-language pathology. International Journal of Speech-Language Pathology, 10(1,2), 9-17. McLeod, S. (2004). Speech pathologists’ application of the ICF to children with speech impairment. Advances in SpeechLanguage Pathology, 6(1), 75-81. McLeod, S. and McCormack, J. (2007). Application of the ICF and the ICF-Children and Youth in children with speech impairment. Seminars in Speech and Language, 28 (4), 254-264. McLeod, S. and Threats, T. (2008). The ICF-CY and children with communication disabilities. International Journal of Speech-Language Pathology, 10(1), 92-109. Measuring Health and Disability In Europe (MHADIE) Policy recommendations. Available at http://www.mhadie.it/home3.aspx. Mulhorn, K. and Threats, T. (2008). Speech, hearing, and communication across five national disability surveys: Results of a DISTAB study using the ICF to compare prevalence patterns. International Journal of Speech-Language Pathology, 10(1,2), 61-71. McLeod, S. and Threats, T. (2008). Application of the ICF-CY to children with communication disabilities. International Journal of Speech-Language pathology, 10(1,2), 92-109. O’Halloran, R. and Larkins, B. (2008). The ICF Activities and Participation related to speech-language pathology. International Journal of Speech-Language Pathology, 10(1,2), 18-26. O’Halloran, R., Worrall, L., Code, C., Toffolo, D. and Hickson, L. (2004). The Inpatient Functional Communication Interview. Oxon, UK Speechmark. Paul, D., Frattali, C., Holland, A., Thompson, C., Caperton, C. and Slater, S. (2004). Quality of Communication Life Scale. Rockville, MD: ASHA. Ripich, D. and Horner, J. (2004). The neurodegenerative dementias: Diagnosis and interventions. The ASHA Leader, 4-5. Ross, K. and Wertz, R. (2005). Advancing appraisal: Aphasia and the WHO. Aphasiology, 19(9), 860-870. Simmons-Mackie, N. (2004). Cautiously embracing the ICF. Advances in Speech-Language Pathology, 6(1), 67-70. Simmons-Mackie, N. (2004). Using the ICF framework to define outcomes. Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders, 14(1), 9-11. Simmons-Mackie, N. and Kagan, A. (2007). Application of the ICF in aphasia. Seminars in Speech and Language, 28(4), 244-253. Simmons-Mackie, N., Threats, T. and Kagan, A. (2005). Outcome assessment in aphasia: A survey. Journal of Communication Disorders, 38, 1-27. Soliz, P. and Torres, L. (2008). ICF implementation in Latin America. Poster presented at 2008 Meeting of WHO Collaborating Centres for the Family of International Classifications, Delhi, India. Stucki, G. and Grimby, G. (2007). Organizing human functioning and rehabilitation research into distinct scientific fields: Part I: Developing a comprehensive structure for them cell to society. Journal of Rehabilitation Medicine, 39, 293-298. Stucki, G., Reinhardt, J. D. and Grimby, G. (2007). Organizing human functioning and rehabilitation research into distinct scientific fields. Part II: Conceptual descriptions and domains for research. Journal of Rehabilitation Medicine, 39, 299–307. 52

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Worrall, L., McCooey, R., Davidson, B., Larkins, B. and Hickson, L. (2002). The validity of functional assessments of communication and the Activity/Participation components of the ICIDH-2: do they reflect what really happens in reallife? Journal of Communication Disorders, 35(2), 107137. Worrall, L. (2001). The social approach: another new fashion in speech-language pathology? Advances in Speech-Language Pathology , 3(1), 51-54. Yaruss, J. S. (2007). Application of the ICF in fluency disorders. Seminars in Speech and Language, 28(4), 312-322. Yaruss, J. and Quesal, R. (2004). Stuttering and the International Classification of Functioning, Disability, and Health (ICF): An update. Journal of Communication Disorders, 37(1), 35-52. Yiu, E. M-L. and Ma, E. (2002) Voice activity limitation and participation restriction in the teaching profession: The need for preventive voice care. Journal of Medical Speech-Language Pathology, 10(1):51-60. Ylvisaker, M., Hanks, R. and Johnson-Greene, D. (2002). Perspectives on rehabilitation of individuals with cognitive impairment after brain injury: Rationale for reconsideration of theoretical paradigms. Journal of Head Trauma Rehabilitation, 17(3), 191-209. Westby, C. (2007). Application of the ICF in children with language impairments. Seminars in Speech and Language, 28(4), 265-272. Worrall, L. and Hickson, L. (2008). Use of the ICF in speech-language pathology research: Towards a research agenda. International Journal of Speech-Language Pathology, 10(1,2), 72-77. World Health Organization (1992). ICD-10: International Statistical Classification of Diseases and Related Health Problems. Geneva, Switzerland: Author. World Health Organization. (2007). The International Classification of Functioning, Disability, and Health for Children and Youth. Geneva, Switzerland: Author. World Health Organization. (2001). International Classification of Functioning, Disability, and Health (ICF). Geneva, Switzerland: Author. World Health Organization. (2006). Constitution of the World Health Organization. Accessed on: http://www.who.int/ governance/eb/who_constitution_en.pdf.

Recibido: 05/07/2009 Modificado: 08/10/2009 Aceptado: 20/01/2010

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