Functioning, Disability, and Health: a Taiwanese Study

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Provided by Elsevier - Publisher Connector Journal of the Formosan Medical Association (2013) 112, 691e698

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ORIGINAL ARTICLE Evolution of system for disability assessment based on the International Classiﬁcation of Functioning, Disability, and Health: A Taiwanese study

Sue-Wen Teng a, Chia-Feng Yen b, Hua-Fang Liao c, Kwan-Hwa Chang d, Wen-Chou Chi e, Yen-Ho Wang f, Tsan-Hon Liou g,h,*, Taiwan ICF Team

a Bureau of Nursing and Health Services Development, Department of Health, Taipei, Taiwan b Department of Public Health, Tzu Chi University, Hualien, Taiwan c Chinese Association of Early Intervention of Professional for Children with Developmental Delays, Hualien, Taiwan d Department of Physical Medicine and Rehabilitation, Wan Fang Hospital, Taipei Medical University, Taipei, Taiwan e Department of Information Management, National Chung Cheng University, Chiayi, Taiwan f Department of Physical Medicine and Rehabilitation, National Taiwan University Hospital, National Taiwan University, Taipei, Taiwan g Department of Physical Medicine and Rehabilitation, Shuang Ho Hospital, Taipei Medical University, Taipei, Taiwan h Graduate Institute of Injury Prevention, Taipei Medical University, Taipei, Taiwan

Received 26 March 2013; received in revised form 3 September 2013; accepted 3 September 2013

KEYWORDS Background/Purpose: The criteria for disability were mainly based on the medical model, and the disability; candidates for disability benefits were identified by physicians mainly depending on their degree of International bodily impairment, but without sufficient evaluation of their activity, participation, and environ- Classification of ment in Taiwan. According to the People with Disabilities Rights Protection Act, the assessment of Functioning; a person’s eligibility for disability benefits was required to be based on the International Classifica- Disability; tion of Functioning, Disability, and Health (ICF) framework since July 11, 2012. This study investi- and Health; gated a proposed system to assess patients’ eligibility for disability in Taiwan, based on the ICF.

* Corresponding author. Department of Physical Medicine and Rehabilitation, Shuang Ho Hospital, Taipei Medical University, 291 Jhongjheng Road, Jhonghe, New Taipei City 235, Taiwan. E-mail address: [email protected] (T.-H. Liou).

World Health Methods: We have initiated a national decision-making process involving members of Taiwan’s ICF Organization Team. We facilitated 16 group discussions on the ICF coding system, in which 199 professionals participated. In each group, one member led the group discussion until a consensus was reached. Results: We have developed a process to determine the eligibility of people with disabilities. This study set up the standards,tools, and practice manuals for eachcategory. We have also developed a core set for disability assessment. Conclusion: We implemented a new system to assess patients’ eligibility for disability. The proposed assessment protocol and tools require further validation. Copyright ª 2013, Elsevier Taiwan LLC & Formosan Medical Association. All rights reserved.

Introduction Functioning, Disability, and Health (ICF) framework since 2012. Disability may be defined as a negative interaction between The ICF framework was developed by the World Health the functional impairments and environment of an indi- Organization (WHO) to describe health and disability at the vidual. People with disabilities often experience difficulty level of both the individual and society. It examines a person’s functioning at the level of body, person, and so- in daily life and are limited in their activities and social 4 participation. The Ministry of the Interior in Taiwan re- ciety, and provides definitions for operational assessment. ported that the number of people with disabilities nation- The ICF system provides a universal framework for assessing wide in 2003 was 861,030 (3.8% of the total population); the functional limitations of any person. The ICF classifi- this figure had increased to 1,100,436 by 2011 (4.6% of the cations are based on the understanding that for any person, total population).1 The percentage of disabled people various factors interact, and all of these factors must be shows a yearly increasing trend (Fig. 1). considered in making a proper assessment; hence, several People with disabilities often require special support in domains of assessment are included, such as body function various areas to assist them in adjusting to normal daily and structure, activity and participation, and environ- life, such as education, housing, work, and social bene- mental and personal factors (Fig. 2). The ICF system has fits.2 Since 1980, the Taiwanese government has applied been universally accepted by the United Nations since 2001. It provides an excellent scientific approach to collect certain legislative procedures to create and revise cate- 5,6 gories of disability. A person who fulfills the criteria to reliable statistics on disabled populations. In Japan, determine eligibility for disability benefits may be granted Italy, and Australia, the ICF framework has been used to cash and in-kind services from the government. However, guide clinical measurement and evaluation of patients requiring rehabilitation, home care, old-age care, and the criteria for disability were mainly based on the medi- 7e9 cal model, which considered disability as a physical and disability support. The ICF framework was also used in mental impairment. Thus, candidates for disability bene- the Multi-Country Survey Study conducted between 2000 fits were identified by physicians mainly depending on and 2001, and the World Health Survey Program of 2002 and 2003, to measure the health status of general populations their degree of bodily impairment, but without sufficient 7 evaluation of their activity, participation, and environ- in 71 countries. ment. In 2007, the Taiwanese Legislative Yuan passed a To prepare for reform in the system of disability constitutional amendment known as the People with Dis- assessment, the Taiwanese government authorized pro- abilities Rights Protection Act.3 Under this act, the fessionals to form a Taiwanese ICF Team. This task force assessment of a person’s eligibility for benefits was includes physicians, dentists, nurses, physical therapists, required to be based on the International Classification of occupational therapists, social workers, psychologists,

Figure 1 The trend and estimated prevalence rates for disability in Taiwan between 1997 and 2011. Black bars indicate the number of people with disability each year, and the line shows the percentage of people with disability among the general population each year. Disability evaluation based on the ICF in Taiwan 693

Heath condition her ideas on appropriate methods for formulating stan- (disorder or disease) dardized assessment tools. These ideas were communi- cated either during the meetings or by e-mail. The groups then designed suitable assessment tools and proposed the cutoff values for the degree of disability. The cutoff points Body Functions Activities Participation were based on the members’ clinical experience as well as and Structures empirical data.

(3) Developing assessment tools for activity and participation (d codes) Environmental Personal Factors Factors Initially, the teams focused on developing an operation manual for the existing 137 categories of d codes. The Figure 2 Framework of International Classification of Func- manual covered assessment procedures, tools, and the tioning, Disability, and Health (ICF) and interactions between criteria for all codes of activities and participation. How- the components. ever, this task force then became aware that the WHO had developed a second edition of the WHO Disability special education teachers, vocational assessment workers, Assessment Schedule, (WHODAS 2.0), which included an assessment of difficulty in daily activities and social public health scholars, and representatives of welfare 10 groups for people with disabilities. The team’s mission was participation. A review of the literature showed that WHODAS 2.0 was compatible with the ICF component ac- to develop a standardized instrument to assess disability 11 and to formulate Taiwan’s policies on disability. The cur- tivities and participation. Furthermore, WHODAS 2.0 can be used cross-culturally and has been tested in more than rent study examines the process of introducing these re- 12 forms, and documents the experience gained in the field of 10 countries. Our group discussed this issue over several disability assessment in Taiwan between 2007 and 2012. meetings and decided to use the 36-item version of WHODAS 2.0 rather than the ICF component activities and participation (d code).11 Methods The WHODAS scoring system is based on itemeresponse theory, with domain scores comprising the sum of all items The process of reforming disability assessment based on the in a domain. A person’s summary score is the sum of the ICF framework began in 2007. The main steps were as scores for all 36 items. The standardized score for each follows: domain and the summary score were calculated based on the manual for WHODAS.13 The standardized scores ranged (1) Team building and meeting from 0 (least difficulty) to 100 points (greatest difficulty). After examining numerous population norms, our experts A national decision-making process was organized. From agreed that the domain and summary scores for WHODAS June 2008 to April 2010, we facilitated 16 focus groups 2.0 provided a useful solution for grading the level of attended by 199 professional experts. Eight groups focused disability. on the chapters of body functions and structures, and eight The WHODAS 2.0 has six domains. Domain 1 refers to groups focused on activity or participation and the envi- cognition, understanding, and communication, and in- ronment. The group members were researchers and prac- cludes six items. Domain 2 comprises five items relating to titioners drawn from various medical specialties, as well as mobility. Domain 3 refers to self-care and includes four representatives of social welfare associations, all of whom items. Domain 4 comprises five items on the ability to should be familiar with the ICF and disability assessment. get along well with other people. Domain 5-1 covers Each focus group included 5e20 experts, and meetings household activities and includes four items, and Domain 5- were held periodically; one leader was appointed in each 2 covers work and school activities and includes four items. group to lead the discussions and help the group reach Domain 6 examines participation and includes eight items. agreement through a consensus or by voting. Several Based on WHO guidelines and considering cultural differ- meetings were also held, at which only the group leaders ence, with permission we translated and modified WHODAS were present and the following principles were decided on: 2.0 into the Chinese version of Functioning Scale of (1) all codes were at two-level categories; (2) both ICF and Disability Evaluation System (FUNDES). ICF-CY codes should be considered; and (3) insufficient evidence was available on reliable cutoff values to deter- (4) Developing assessment tools for environment (e code) mine the degree of disability; thus, for environmental factors, grading would be restricted to a binary variable: Environmental factors were selected according to expert barrier (negative) and no barrier. consensus. After several rounds of discussion, the focus groups summarized a list of ICF categories for environmental (2) Developing assessment tools for body function (b code) factors, as follows: e110, products or substances for per- and structure (s code) sonal consumption; e115, products and technology for personal use in daily living; e120, products and technology for In the focus groups addressing the chapters on body personal indoor and outdoor mobility and transportation; functions and structures, each member contributed his or e125, products and technology for communication; e130, 694 S.-W. Teng et al. products and technology for education; e165, assets; e225, climate; and e570, social security services, systems, and Process of Disability Assessment policies. As mentioned above, environmental factors were rated either as a barrier (negative score) or as no barrier, without further grading. Past Present

Results Hospital Hospital Step 1: Performed by Physician: Performed by Physician The task team drafted a new assessment system, including body function and structure (b and s criteria and practice manuals for the b, s, d, and e codes of categories of ICF) Step 2: Performed by non-physician the ICF. Between September 2008 and April 2010, those professionals: activity, participation groups held 57 meetings to discuss ICF disability assessment and environment (d and e categories (22 meetings for b and s codes, and 35 meetings for d and e of ICF) codes); 19 meetings for group leaders; and 75 meetings focusing on the child and youth version (ICF-CY). The meetings were held nationwide. Disability Certificate: Certificate of Disability Assessment Degree of disability is Outcome (disability type and level) (1) Disability assessment tools determined according to 16 categories and 4 levels During the meetings and discussion, the experts involved in this study decided that only two-level categories should be accepted for clinical disability assessments.14 Pro- fessionals in each focus group also agreed that a new sys- Needs Assessment tem for functional assessment should be based on existing Multidisciplinary professionals of tools, such as the Wechsler Adult Intelligence Scale (third Ministry of Interior edition) for intelligence assessment, and the Berg Balance Scale for balance evaluation. The Taiwanese ICF team members thus developed operational manuals and training courses for assessors that incorporated currently used Disability confirmed by Government instruments.15 Issue identification card and arrange appropriate welfare support Figure 3 Changes to the procedure of disability evaluation (2) Procedures for determining eligibility for disability system in Taiwan, past and present. benefits (3) Development of a core set for disability determination The procedure changes implemented to the disability evaluation system are shown in Fig. 3. The proposed system of assessing disability included two stages, both of which The task force used the Delphi technique to develop a were to be conducted by the appraising hospital. The first core set for disability assessment. For body function and step is performed by physicians and focuses on the pa- structure components, there were 43 categories included in tient’s body function and structure (b and s codes). The the core set of disability. Most items were second-level, second step must be performed by another professional, including those of the ICF-CY, however, to provide greater and focuses on the patient’s activity and participation as detail, some items had forth level. For the assessment of well as environmental factors (d and e codes). After activity and participation, this task force designed two assessment at the hospital, the patients is transferred to a scales to measure a patient’s functional status. These were needs assessment system so that his or her need for state the Functioning Scale of Disability Evaluation System Adult support and services can be thoroughly evaluated. Version (FUNDES-Adult) for people aged 18 years and older, The process of disability assessment thus requires at and the FUNDES-Child version for children and youths (age least two authorized specialists per patient. One or more 6e17.9 years).16,17 The two FUNDES scales were separately physicians evaluate the applicant’s impairments at the designed and were based on the WHODAS 2.0 and the Child level of body functions and structures according to the and Family Follow-up Survey (CFFS) (Fig. 4). items related to ICF categories. The second tester evalu- The FUNDES-Adult includes 97 items, with performance ates the applicant’s limitations on activity and participa- and capability dimensions in Domains 1e6 (cognition, tion using the WHODAS 2.0 items and the environmental mobility, self-care, getting along, life activities, and factors. Qualified practitioners who have worked for at participation) and capability and capacity dimensions in least a year in their relevant field (i.e., physical therapy, Domain 8 (motor action). Domain 7 (environmental attri- occupational therapy, speech therapy, psychology, or social butes) includes items to measure the perceived environ- work) may become authorized as appraisers following a mental barriers the patient may encounter. year of related working experience. Between 2010 and The FUNDES-Child version has 74 items that cover four 2012, we used the WHODAS 2.0 appraiser’s Training Manual aspects: physical and emotional health; participation; the and Interview Guide to train more than 6000 people to child and adolescent factors inventory; and the child and conduct disability evaluations in Taiwan. adolescent scale of environment. The participation section Disability evaluation based on the ICF in Taiwan 695

Disabling condition

Disease, illness, or other health problems Injuries Mental or emotional problems

Body Functions Activities Participation and Structures

b110 b117 b122 b139 b140 FUNDES-adult ( 18 years old) b144 b147 b152 b160 b164 Domain 1 : Cognition Domain 2 : Mobility b167 b16701 b16711 b210 b230 Domain 3 : Self-care Domain 4 : Getting along b235 b310 b320 b330 s320 Domain 5 : Life activities Domain 6 : Participation s330 s340 b410 b415 b430 FUNDES-child ( 18 years old) b440 s430 b510 s530 s540 Domain 1 Home participation s560 b610 b620 b710 b730 Domain 2 Neighborhood and community participation b735 b765 s730 s750 s760 b810 b830 s810 Domain 3 School participation

Environmental Factors Personal Factors

e110 e115 e120 Age, sex, pre-morbid disability, e125 e130 e165 duration of disability, education e225 e570 level etc.

Figure 4 Core set for disability assessment based on ICF. FUNDES Z functioning scale of disability evaluation system. Note. From “WHO Disability Assessment Schedule 2.0,” by World Health Organization, 2011, http://www.who.int/classifications/icf/whodasii/ en/index.html, Copyright 2011, WHO, Adapted with permission. includes items to measure independence and frequency. new evaluation system has been implemented without an The second section of the FUNDES-Child version addresses extensive database or evidence, and further studies are participation, and was developed from the child and required to validate it. Such studies should include the adolescent scale of participation (CASP).18e20 Other sec- assessment results for people with disabilities rather than tions measure health conditions or body functions, and one simply expert consensus as in the current study. section presents the environmental factors of the ICF-CY. The participation section has four domains: home partici- (5) A testing trial pation (6 items), neighborhood and community participation (4 items), school participation (5 items), and home Prior to implementation, a trial was conducted. We and community living activities (5 items). Items in the collected data and compared them with those obtained participation section are classified into independence and from the previous system. There were 7098 adults (3869 frequency dimensions. The psychometric properties of the men and 3229 women) participating in this study. The CASP-Traditional Chinese version have been validated.16 average age was 57.37 Æ 17.58 years and 60.11 Æ 18.66 years, respectively. The causes of disability included visual (4) Determination of the level of disability impairment, hearing impairment, speech dysfunction, motor dysfunction, mental intellectual impairments, vital In Taiwan, prior to 2012 the eligibility criteria for organ impairment, facial damage, dementia, autism, disability support were based on the medical model. An chronic mental disease, and rare disease. The three leading authorized physician evaluated and reported the appli- causes of disability were motor dysfunction (28.5%), cant’s impairments or problems in body functions and chronic mental disease (26.2%), and hearing impairment structures using the official Disability Eligibility Determi- (10.0%). The results showed a 49.7% agreement between nation Scale (1980 edition). However, in 2007 the system of the two evaluation systems. evaluation was reformed, and the process of disability assessment changed accordingly. In addition to evaluating the applicant’s impairments in body functions and struc- Discussion tures, assessment of his or her activity and participation in daily life must now be included. The final determination of In Taiwan, the system for evaluating a patient’s disability the patient’s degree of disability and eligibility for state and eligibility for state support has been undergoing a support depends on the combined results for the b and s process of reform since 2007. This study focused on the codes and the summary score of FUNDES. This proposed development of a suitable method of assessment. The 696 S.-W. Teng et al. rights of people with disabilities are protected by this re- Kenya and 5% in South Africa and Bangladesh to 20% in New form, and the new system is based on the biopsychosocial Zealand.31,32 In Taiwan, the disability prevalence was 4.6% model. Thus, holistic and multidisciplinary approaches are in 2011.1 Difference in the estimated prevalence among required for disability assessment. countries may arise through several factors, including The implementation of this new system has several different cutoff points for eligibility for disability benefits, implications for Taiwan. The implications for medical pro- different methodologies and data collection, and variation viders, government bodies, and Taiwanese citizens are in the quality of study design. An important factor influ- briefly discussed here. For hospitals and other medical encing the reported prevalence rate is the purpose of providers, the number of personnel able to assess disability disability assessment; in Taiwan, this purpose is influenced must be expanded, and multidisciplinary professionals will by politics.33 be required to complete the evaluations. The costs to the These consist of 32 bodily functions, 16 body structures, hospital for the increased time and space given to disability and participation in 48 activities from the ICF checklist.14 In assessments will rise. For local government, the budget for Europe, only five bodily functions and 15 activity partici- disability assessments has increased markedly from July pation codes are used to evaluate a patient’s eligibility for 2012. Furthermore, local governments must develop a social security.34 In this Taiwanese study, 140 codes/items method to resolve cases for who the result of needs for adults and 117 codes/items for children were selected assessment is disputed. The third main implication con- to evaluate disability. Among them, 43 codes were drawn cerns central government, which must cultivate the from the b and s categories of ICF, and others were from the development of professionals to assess disability according WHODAS 2.0 and CFFS respectively. Demonstrating the to the ICF framework, and authenticate their qualification. application of this core set remains an important challenge Central government must also provide diverse resources for the Taiwanese government to address. and an effective delivery system to cater for various needs, Another important issue in the reform of disability and must integrate the assessment process with other so- assessment was establishing cutoff points for the degree of cial welfare services such as long-term care or medical disability. Insufficient evidence has been accumulated care. The fourth implication of reforming the assessment worldwide to clearly define the criteria. The cutoff points system concerns people with disabilities and their families. are influenced largely by the budget for social welfare in a Certain patients might be affected by a change in their specific country. Taiwan’s social welfare system is a resid- classification of disability level and might no longer be ual model of social welfare and allocates more extensive eligible for services from the social welfare system. services to people with severe disabilities than to those Furthermore, the time required for the processing of a with mild ones; this principle includes care in kind, personal evaluation and needs assessment might be prolonged. care budgets, and cash benefits. As a result, determining a These implications pose challenges for our country and patient’s final disability rating using various qualifier codes must be addressed. remains a challenge. Studies conducted by the WHO, and a Although the ICF framework has been implemented in separate Italian study, have suggested that a large sample many countries, thus far little experience has been docu- is necessary to determine appropriate weight indices and mented on using the ICF system to classify people with disability scores.10,35 This remains another important task disabilities on a nationwide basis.8,21e24 The bio- facing the Taiwanese government. psychosocial model reconceptualizes disability as arising from the interaction between a person’s functional status with the physical, cultural, and policy environments.25,26 If Recommendations for further studies the environment is designed to accommodate the full range of possible types of human functioning, and incorporates The final determination of a person’s degree of disability is appropriate accommodation and support, people with obtained from a summary of the ICF codes, including functional limitations would not be “disabled” and would qualifiers. However, no empirical evidence or nationwide be able to participate fully in society.27,28 Interventions are data currently exist to justify the use of certain cut-off thus not limited to the individual level (e.g., medical values for disability. The accuracy of ICF qualifiers in rehabilitation) but are also conceptualized at the societal determining the level of disability assessment has yet to be level. For example, the introduction of barrier-free designs established. Experts in our study adopted or modified cur- to make the environment more accessible for people with rent measures to create new protocols and tools. These mobility impediments, inclusive education systems, and instruments and methods require long-term testing and community awareness programs to combat the stigma of validation. “disability” will all enable people with disabilities to lead Welfare services and social support should be carried out fuller lives. The ICF is based on a theoretical model that for people with disability according to their results of draws on a social understanding of disability, and thus, disability assessment and needs assessment. The ICF pro- avoids a dualistic “all or none” definition.29 People are vide a linking between the medical assessment, functional identified as disabled based not only on a medical condition evaluation, and needs assessment for people with but also on a detailed review of their functioning within disability. This study mainly focused on disability assess- various domains. Thus, the Taiwanese government has ments. Further studies on needs assessments are required. selected the ICF as the preferred integrative model to assist The implementation of the ICF system in Taiwan will with the reform of disability assessment.30 facilitate international studies comparing the results of The estimated prevalence of disability differs world- diverse interventions, service performance, patient satis- wide. The reported prevalence ranges from less than 1% in faction, and cost effectiveness. Disability evaluation based on the ICF in Taiwan 697

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