Opinion Calling for Securing the Protection of Human Rights for Those Suffering from Intractable Diseases
July 16, 2015
Japan Federation of Bar Associations
The Japan Federation of Bar Associations (“JFBA”) prepared its “Opinion Calling for Securing the Protection of Human Rights for Those Suffering from Intractable Diseases” and submitted it to the Prime Minister, the Minister of Education, Culture, Sports, Science and Technology, and the Minister of Health, Labour and Welfare on July 28, 2015.
It is imperative for the government to immediately take the measures described below in order to fully implement the “Convention on the Rights of Persons with Disabilities” (the “Convention”) for all of those suffering from intractable diseases throughout Japan and to realize the reform of the legal system with reference to those suffering from intractable diseases based on the “Basic Act for Persons with Disabilities” (the “Basic Act”).
1. In respecting the fundamental human rights of those suffering from intractable diseases, the government should undertake a drastic reform of the legal systems regarding such persons in order to comprehensively promote a wide variety of legal systems which provide support to such persons in accordance with the Basic Act with the aim of achieving the establishment of an inclusive and cohesive society as stipulated in the Convention.
At a bare minimum, the following should be realized in conducting the reform of the legal system concerning those suffering from intractable diseases.
(1) The legal system should be designed in line with the actual status of how those suffering from intractable diseases lead their lives as well as the characteristics of their disabilities, which should be clarified by way of a fact-finding survey such as that described in item 2. below.
(2) Concerning the concept of “those suffering from intractable diseases,” the following definition should be adopted pursuant to the revised Basic Act, which was amended in line with the intent of the Convention.
“Those suffering from intractable diseases” refers to “persons who are subject to a considerable degree of restriction in leading their daily or social lives because of a disability in their physical and mental functions and of social barriers due to intractable disease.”
“Intractable disease” means “a disease of a refractory nature which requires continuous (including on a periodic/intermittent basis) medical treatment.”
(3) Appropriate measures should be taken in response to issues concerning those suffering from intractable diseases, such as the following: (i) anti-discrimination and prevention of abuse; (ii) subsidies for medical expenses; (iii) employment opportunities and access to a community-based lifestyle; and (iv) education for children suffering from intractable diseases.
2. In order to achieve an effective reform of the legal system regarding those suffering from intractable diseases, the government should swiftly launch a fact-finding survey regarding the issues surrounding such persons, namely: (i) medical treatment; (ii) employment; (iii) way of life and education of children suffering from intractable diseases; (iv) a community-based lifestyle; and (v) abuse etc. In particular, there is an urgent need to clarify the actual situation on a nationwide scale with reference to: (i) schools within hospitals (for children subject to long-term hospitalization); and also (ii) education through home visits for children suffering from intractable diseases. Further, the need to grasp the actual situation regarding the abuse of such children and persons also needs to be urgently tackled.