Yuichiro HARUNA, Ph.D. National Institute of Vocational Rehabilitation

1. Disabilities in Working Life for Persons with Various Intractable Diseases Influenced by Workplace Environments - Results of mail survey based on ICF framework in Japan - Yuichiro HARUNA, Ph.D. National Institute of Vocational Rehabilitation Wakaba, Mihama-ku, Chiba, 261-0014 Japan E-mail: yharuna@jeed.or.jp

2. Background • 1. ICF is for all persons with health conditions. • A lot of patients with intractable diseases have been dealt only from medical perspectives, thus have not been recognized as persons with disabilities with needs for full participation in Japan. • 2. Labor is an important health-related component. • It becomes to be recognized in Japan that a lot of patients with “intractable” diseases have experienced rejections of job applications, or actually are working with difficulties. • 3. Grounds for environmental adjustments are needed. • Scientific evidence is needed to persuade employers and policy makers that patients with “intractable” diseases can be qualified workers if adequate environmental adjustments are made.

3. Objectives • To evaluate effects of specific modifications of workplace environments on performance of work-related Activity according to various impairments and diseases.

4. Methods • Setting • Mail survey to randomly selected individuals participating in self-help patient groups of intractable diseases whose age was from 18 to 65 years old. • Participants • Cases of 3,691 collected out of 9,901 mail delivery. • Participants’ diseases were Systemic Lupus Erythematosus, Ulcerative Colitis, Crohn's Disease, Behchet's Disease, Spontaneous Occlusion of the Circle of Willis, Multiple Sclerosis, Systemic Sclerosis, Dermatomyositis/Primary Multiple Myositis, Spino-cerebellar Degeneration, etc.

5. Questionnaire (1) • Health Conditions • Back coded into ICD from free description of one’s diagnosed name and type of disease. • Body functions and Structures • Multiple answers selected from the options of chapters and block level categories of ICF. • [problem, no problem, don’t know] • Mental functions (b1) • Seeing and related functions (b229) • Hearing and vestibular functions (b249) • Additional sensory functions (b279) • Sensation of pain (b289) • Voice and speech functions (b3) • Functions of the cardiovascular system (b429) • Functions of the haematological and immunological systems (b439) • Functions of the respiratory system (b449) • Exercise tolerance functions (b455) • Functions related to the digestive system (b539) • Functions related to metabolism and the endocrine system (b559) • Urinary functions (b639) • Genital and reproductive functions (b679) • Functions of the joints and bones (b729) • Muscle functions (b749) • Movement functions (b789) • Functions of the skin (b849) • Functions of the hair and nails (b869) • Body structures (s)

6. Questionnaire (2) • Activity and Participation • Work and employment specific domains of ICF selected based on previous survey • Some sub-classifications were added. Wordings were modified. • [problem, previous problem, no problem, not needed for one’s work] • Handling responsibilities (d2400) • Handling stress (d2401) • Handling crisis (d2402) • Communicating - receiving (d329) • Communication - producing (d349) • Conversation and discussion (d35) • Using communication devices and techniques (d360) • Basic interpersonal interactions (d710) • Formal relationships (d740) • Maintaining a sitting position (d4153) • Maintaining a standing position (d4154) • Lifting and carrying objects (d430) • Fine hand use (d440) • Hand and arm use (d445) • Walking (d450) • Moving around (d455) • Using transportation (d470) • Driving (d475) • Toileting (d530) • Looking after one's health (d570) • Maintaining one's health (d5702) • Going to hospital regularly (d5702w2) • Living independently after working hours (Ex. dwelling and shopping) (d6) • Maintaining a job (d8451) • Promoting in an employment (d8451w2) • Earning a proper income by an employment (d8509w1) • Acquiring skills (d155) • Focusing attention (d160) • Reading (d166) • Writing (d170) • Calculating (d172) • Solving problems and/or making decisions (d175,d177) • Undertaking single or multiple tasks (d210,d220) • Working regularly avoiding tardiness, early leaving, or absence (d2302w10) • Working for eight hours (d2302w11) • Managing one's own activity level (d2303) (The extensions of code with ‘w-’ indicate sub-classifications.)

7. Questionnaire (3) • Environmental Factors • Work and employment specific domains of ICF selected based on previous survey • Some sub-classifications were added. Wordings were modified. • [exist, needed but not exist, needless] • Personal care providers and personal assistants (e340) • In-house consultant for all aspects of life (e360w1) • Education of all staffs and employees to avoid prejudice and discrimination (e425w0) • Promote understanding about the disease and disability in supervisors and colleagues (e425w1) • Employer's attitude taking enough time for good communications (e425w3) • Employer's attitude positively listening to employee's opinion (e430w11) • Personnel policy for career advancement regardless of disease or disability (e430w42) • In-house friendship activity (e5550w2) • In-house health care service by industrial physicians and nurses (e5800w1) • Health condition check conducted by a supervisor every day (e5800w21) • Designated place in office for necessary rest or self management of disease (e5800w3) • Accommodation for medication or self management during working hours (e5800w4) • Accommodation for going to hospital regularly (e5800w511) • Job assignment according to one's physical strength and concentration (e5900w211) • Job carving (customized adjustment of tasks of the assigned job) (e5900w22) • Checking one's job by medical professionals and employer (e5900w223) • Employer's support for career advancement (e5900w231) • Education and skill training at the beginning of work or at re-assignment (e5900w31) • Man-to-man individualized guidance (Ex. on-the-job training) (e5900w332) • Telecommuting (e5900w411) • Change of working hours (Ex. flextime and Flex work) (e5900w422) • Work for a short time (Ex. Work-sharing) (e5900w423) • Accommodation for a necessary rest during work hour (e5900w424) • Products and technology for personal use in daily living (e115) • Assistive products and technology for personal indoor and outdoor mobility and transportation (e1201) • Assistive products and technology for communication (e1251) • Adapted work manual and training materials (e1300w1) • Easy-to-use equipments and machines (Ex. universal design) (e1350w1) • Air conditioner or air cleaner (e1350w3) • Assistive products and technology for employment (e1351) • Design, construction and building products and technology for entering and exiting buildings for public use (e1500) • Design, construction and building products and technology for gaining access to facilities inside buildings for public use (e1501) • Adjustments of facilities for common use (Ex. rest rooms, dining rooms) (e1501w3) • Colleague's assistance as needed (e325w2) • Colleagues or supervisors who give advice on the job (e325w3) (The extensions of code with ‘w-’ indicate sub-classifications.)

8. Analysis • Health Conditions • Impairments Environmental Factors Activity and Participation • Chi-square tests for statistical significance • Problem incidence WITHOUT an environmental factor (i1) = d / (b + d) • Problem incidence WITH an environmental factor (i2) = c / (a + c) • Relative risk of absence of the environmental factor (RR) = i1 / i2

9. Result 1: Participation and basic recognition

10. Health Condition Body functions/ structures Activities Participation Environmental factors Personal factor Result 2: Health Condition and Impairments Example: Impairmentsrelated to ‘SLE(Systemic Lupus Erythematosus)’ • (77.6%)'Exercise tolerance functions • (71.3%)'Functions of the skin' • (66.9%)'Functions of the haematological • and immunological systems' • (56.2%)'Sensation of pain' • (54.6%)'Functions of the joints and bones' • (52.7%)'Functions of the hair and nails' • (44.2%)'Body structures' • (43.2%)'Functions related to metabolism and the endocrine system' • (42.9%)'Seeing and related functions' • (39.1%)'Muscle functions' • (38.5%)'Functions related to the digestive system' • (37.9%)'Urinary functions'

11. Health Condition Body functions/ structures Activities Participation Environmental factors Personal factor Result 3: Impairment and Activity Limitations • (31.9%)'Handling stress (d2401)' • (26.8%)'Promoting in an employment (d8451w2)' • (26.2%)'Maintaining a standing position (d4154)' • (25.4%)'Managing one's own activity level (d2303)' • (25.0%)'Handling responsibilities (d2400)' Example: Activity Limitations related to Impairment of 'Exercise tolerance functions’ in‘SLE’ WITHOUT proper environmental adjustments

12. Health Condition Body functions/ structures Activities Participation Environmental factors Personal factor Result 4: Health Condition and Activity Limitations • (39.5%)'Working for eight hours' • (37.2%)'Handling stress' • (34.1%)'Promoting in an employment' • (33.6%)'Maintaining a job' • (32.0%)'Managing one's own activity level' • (31.6%)'Maintaining a standing position' • (31.2%)'Lifting and carrying objects' • (29.9%)'Working regularly avoiding tardiness, early leaving, or absence' • (26.1%)'Handling responsibilities' • (26.1%)'Earning a proper income by an employment' Example: Activity Limitations related to ‘SLE’ WITHOUT proper environmental adjustments

13. Health Condition Body functions/ structures Activities Participation Environmental factors Personal factor Result 5: Effects ofEnvironmental Factors (1) Example: ‘Handling stress’ problem related to Impairment of ‘Exercise tolerance functions’ Average incidence of the problem: 47.1% (WIHOUT Env.Adj.) WITH Env.Adj

14. Health Condition Body functions/ structures Activities Participation Environmental factors Personal factor Result 5: Effects ofEnvironmental Factors (2) Example: ‘Handling stress’ problem related to ‘SLE’ Average incidence of the problem: 37.2% (WIHOUT Env.Adj.) WITH Env.Adj

15. Health Condition Body functions/ structures Activities Participation Environmental factors Personal factor Result 5: Effects ofEnvironmental Factors (3) Example: ‘Handling stress’ problem related to Impairment of ‘Exercise tolerance functions’ related to ‘SLE’ Average incidence of the problem: 31.9% (WIHOUT Env.Adj.) WITH Env.Adj

16. Discussion 1: Medical and Social models • Activity Limitations (Performance) are very changeable by interaction of individual and environment. • The results clearly indicated that Activity Limitations were significantly influenced by existence or absence of environmental factors, being specific to Health Conditions and Impairments, supporting the idea of “The political notion that disability is as much the result of environmental barriers as it is of health conditions or impairments must be transformed, first into a research agenda and then into valid and reliable evidence.” proposed in the Annex 5 of ICF (ICF and people with disabilities). • The results can be ‘evidence to bring genuine social change for persons with disabilities’. • The obtained results are suitable to persuade employers and policy makers, because the results show them not only “what to do” but also “what they could get” by appropriate environmental adjustments. This may be a relevant to the challenging idea of “ICF also serves as a potentially powerful tool for evidence based advocacy. It provides reliable and comparable data to make the case for change. - - - This evidence can bring genuine social change for persons with disabilities around the world.” in the same paragraph above.

17. Discussion 2: Using Environmental Factors • Sub-classification specific to work and employment fields is needed for the classification of Environmental Factors. • Different services under the domain of e5900 (Labour and employment services), for instance, can be facilitators or barriers for employment of persons with health conditions. There isn’t much point in generally coding e5900 for employment concerns. Also the pre-documented list of detailed environmental factors may be used as a checklist to identify ‘absences of facilitators’, which is usually difficult even for experienced coders. • In this study, tentative sub-classification were coded with extension of ‘w’, such as e5900w1, e5900w11, e5900w12, e5900w2, which can be summarized to e5900 if needed. • Empirical approaches are important for practical qualification of environmental factors. • Facilitators and barriers reported by employers or employees with disabilities not necessarily have real impacts on relevant functioning. The calculated R.R. of the present results may be indices for empirical qualification as facilitator or barrier, although they could only be obtained from collective comparisons.

18. Discussion 3: ‘Standard’ Environment • The present results clearly indicated that effects of environmental factors on improvement of Activity Limitation of various domains were dependent of Health conditions and Impairments, thus to realize one’s ‘highest probable level of functioning that a person may reach’ (=Capacity), the environment should be customized for each person. • But the customized environments are obviously incompatible with the ‘uniform’ environment that is the same for all persons in all countries to allow standardization for international comparison. • The author propose clear distinction of the two concepts. The concept of ‘customized’ standard environment is as important as the ‘uniform’ one, since it is consistent with the idea of ‘reasonable accommodation’ appeared in some drafts of International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Needs for environmental adjustments • ‘Uniform’ environment and ‘maximally facilitating’ environment could be irreconcilable. ‘Performance’ in the current environment ‘Capacity’ in the standard environment

19. Conclusion • Using ICF’s framework and classifications, significant evidence was obtained for improvement of functioning of persons with various intractable diseases in working life by well-targeted specific modification of workplace environments. The whole results other then the examples could be browsed in hyper-text fashion at the URL: http://plaza.umin.ac.jp/~haruna/icd_icf_english/ Acknowledgement This study is commissioned by the Japanese Ministry of Health, Welfare and Labor.

20. An application on the web • The varied and complex relationship between ICF components could be more understandable if they are provided as an integrated database. We are making a comprehensive database using ICF as its framework and classification for coding information. • The demonstrative English version of the database application could be tried at the URL: http://uwdb.jeed.or.jp/uwdb2/