『保健医療科学』 2021 第70巻 第5号 p.477-487（2021年12月）
特集：難病患者と家族の尊厳を保持した共生社会の探求 ＜総説＞
難病患者の就労支援ニーズと制度・サービスの多分野連携の課題
春名由一郎
独立行政法人高齢・障害・求職者雇用支援機構障害者職業総合センター
Challenges for interdisciplinary coordination of systems and services in Japan, in supporting the employment of persons with intractable diseases
HARUNA Yuichiro
National Institute of Vocational Rehabilitation, Japan Organization for Employment of the Elderly, Persons with Disabilities and Job Seekers
抄録
難病対策も50年を経て，診断の進歩により多くの新しい難病が特定され，治療の進歩により多くの難病の症状は抑えられるようになった.しかし，依然，根治治療が困難な難病が多い.これにより，治療を継続して生活する患者の高額な医療費を長期に支え，治療を続けながらの就労などの社会参加を支えることが難病対策の新たな課題となった.難病患者が治療と仕事を両立するための課題や支援ニーズは患者調査等から明らかになっており，保健医療分野での相談支援，障害者雇用支援，労働衛生分野の治療と仕事の両立支援において，制度やサービスの整備が進められている.難病患者の相談支援ニーズはしばしば治療，生活，就労の課題が絡み合い複雑である.難病患者本人と雇用する企業・職場が直面する就職前から就職後にわたる多様な課題の解決のために，各分野の制度やサービスを適切に調整し，関係機関・職種の効果的な役割分担と連携を促進する必要がある.その先行事例と課題を紹介する.
キーワード：治療と仕事の両立支援，障害者雇用支援，合理的配慮，障害認定，地域連携
Abstract
In the 50 years of the national intractable disease countermeasure in Japan, many new diseases have been identified due to progress in diagnosis. Although complete treatments are still difficult, improved treatments have been successful in suppressing significant symptoms. Accordingly, new challenges for the national counter- measure have emerged, in terms of supporting the patientsʼ expensive and continuing medical expenses, as well as their participation in society (e.g., as employees) while continuing treatment. The problems and support needs for these patients to balance treatment and work have been clarified through patient surveys. Systems and services are being developed in consultation support services in the health sector and disability employment sector, along with support for balancing treatment and work in the occupational health sector. The support needs of these patients are sometimes complex, involving interrelated issues concerning treatment, life, and employment. It is necessary to properly coordinate systems and services in these sectors, in order to resolve various issues that the patients, employers, and the workplace face throughout the process from work preparation and employment, to job retention, so that related professionals and service providers can effectively share roles and collaborate. Precedence cases for this purpose are described, along with identified challenges.
keywords：health and employment support, disability employment support, reasonable accommodation, dis- ability certification, coordination of community services
