Income security for people with disabilities

According to the 2003 White Paper on People with Disabilities, it is estimated that people aged 18 or older with physical disabilities number 3.422 million and people with intellectual disabilities number 342,000 (including people with more than one disability). People who are receiving medical treatment for psychiatric disorders (schizophrenia, depression, manic depression and other emotional disorders, neuroses, etc.; onset mostly during and after puberty) are estimated to number 2.04 million. Available data indicate that more than several million people with disabilities in Japan face the serious challenge of self-realization.

According to the "Survey on the Status of Employment of People with Disabilities in FY 1998" published by the former Ministry of Labor, people with disabilities employed by business establishments with five or more employees (regular, part-time or other employees) were estimated to number 396,000 for those with physical disabilities, 69,000 for those with intellectual disabilities, and 51,000 for those with mental disorders. This suggests that it is unlikely they can achieve financial independence through work. We must keep in mind that many people with disabilities who are unable to achieve financial independence through work have no choice but to depend on family support or public welfare assistance under Japan's disability pension system, which has continued to leave a great number of disabled people without pension benefits. (Disability pension recipients are estimated to number approximately 1.8 million.) Having been engaged in livelihood support for people with disabilities on a daily basis, our center has witnessed the vicious cycle whereby elderly parents have kept providing daily care and economic assistance (living expenses, medical expenses, national pension premiums, nursing-care insurance premiums, etc.) to their grownup children with disabilities, whose inability to become independent of their parents in turn has made their livelihood more unstable and limited their growth and potential. The disability pension system and other income security measures for people with disabilities should be addressed, because these underlie the lives of people with disabilities, enabling independent community life and social participation based on self-determination and choice.

Disability pensions and people with mental disorders

It goes without saying that the disability pension system plays a central role in income security for people with disabilities in Japan. For people with mental disorders, who have historically lagged behind people with other disabilities in terms of receiving proper attention, disability pensions, which have long covered them, are of great importance (the system was inaugurated in 1961 and mental disorders have been covered since 1964). The Fundamental Law for People with Disabilities in 1993 legally defined people with mental disorders as "those with disabilities," and the enactment of the Mental Health and Welfare Law in 1995 led to the establishment of a system of "mental health welfare handbooks" for people with mental disorders. There is now a greater awareness of the necessity of welfare measures for disabilities caused by diseases in people with mental disorders. Also, improvements have been made, albeit partially, by amending laws from the perspective of measures already practiced in other fields of disability. Nonetheless, a belated understanding of mental disorders as disabilities has kept these disorders outside the system (a system that includes child rearing allowance, welfare allowance for children and adults with physical and intellectual disabilities and other welfare allowances provided by local governments; discount fares, free passes and the like for JR and local transportation; recently, some local governments have begun to consider mental health welfare handbook holders as being covered by the system). In addition, the aforementioned delay has brought about disadvantages in disability assessment (underestimation), which makes for a very user-unfriendly system (e.g., special physically handicapped person allowance, welfare allowance for children with disabilities, and support and mutual aid system for people with physical and intellectual disabilities). The situation in which disability pension and welfare public assistance alone serve as the recourse to improvement or resolution of economic challenges caused by chronic diseases and prolonged disabilities remains unchanged. Disadvantages in income security pose more serious problems for people with mental disorders than for people with other disabilities.

As for the number of persons receiving disability pension due to mental disorders, recipients of the Disability Basic Pension number approximately 220,000 (70% of whom are under the noncontributory plan) and those of the Disability Employees' Pension are estimated to number about 40,000. It is estimated that the total number of such recipients, including those of the Disability Mutual Aid Pension, is below 300,000. Most people with mental disorders are without pension benefits ? even those who need disability pension. Recipients of disability pension are required to satisfy two requirements: 1. a payment requirement (condition for premiums to be paid by the date of the first medical examination; this condition is not required when the date of the first medical examination comes before age 20); and 2. disability condition requirement (whether or not the degree of the disability applies to disability assessment standards as of the day the disability is diagnosed). For certification that these requirements have been satisfied, specified application documents (e.g., certificate of the date of first medical examination and medical certificate) must be submitted. Nevertheless, it is difficult for people with mental disorders to satisfy requirement 1, and to submit application documents and fulfill the requirement stated in 2. As a result, a great number of people with mental disorders are without pension benefits.

Mental disorders that do not fit into the disability pension system

Case example

Mr. A, currently in his late 30s, had many friends and a fulfilling college life that included club activities and part-time employment. During the summer vacation of his sophomore year (at age 19), Mr. A became depressed after having trouble with older schoolmates in one of these clubs, and he rarely left his dorm. Thanks to encouragement from his friends and family members, he was able to return to college at the end of autumn. Despite insomnia and anorexia from job-hunting tension and anxiety, he managed to find work and graduated from university. Immediately after moving into the company dormitory, Mr. A started complaining frequently to his family, saying, "My boss is always picking on me." Two months after landing the job, he moved into an apartment, saying that his colleagues in the dormitory spoke ill of him and that he did not like living in the dormitory. After this, Mr. A quit because, according to him, the boss was jealous of his ability and told his coworkers to hinder his work and because his workplace systematically ignored his ideas. This happened five months after he began working for the company. Saying that he would find a job in Tokyo, he did not return to his parents' home and drifted from one part-time job to the next. One year later, his worried family visited him at his Tokyo apartment to find him worn out, longhaired, bearded and shaking on a futon in a trash-strewn room. On the following day, he visited a local psychiatrist with his family, was diagnosed with schizophrenia and was hospitalized (at age 23). Although he was repeatedly hospitalized, after ten years he became able to commute to a workshop and his medical condition stabilized. When members of the workshop came to receive disability pension, Mr. A also considered applying for it. However, he learned that he was ineligible for disability pension because he failed to satisfy requirement 1 (he had opted out of the national pension scheme during his school days and he didn't pay premiums after retirement. Although his medical condition was stable, commuting to the workshop three days a week was all he could do because his disability was severe. He has had to depend on his elderly mother for meals, washing and other daily care. Since he receives only about 3,000 yen a month from the workshop, his father has been paying the son's national pension premiums from his own pension so that the son will be able to receive a pension in the future. Feeling indebted and tormented by the fact that whenever he ran out of money, he would have to ask his elderly parents for an allowance, Mr. A began cleaning buildings part-time. He worked himself so hard that his disorder recurred shortly thereafter, resulting in a sixth hospitalization, his first in five years.

1. Payment requirements and mental disorders

Since pensions are part of the social welfare insurance system, those who receive benefits must pay a specified premium. But unlike retirement, a foreseeable event, it is difficult to prepare for unpredictable injury, disease or disability. It is hard to be aware of the onset of schizophrenia and other psychiatric disorders (as is also true for internal disorders, intractable diseases and the like) and the impact (disability) on everyday life increases as the symptoms progress over the long term from prodromal to acute. Normally, patients and their families do not realize that they are mentally ill because of the way in which psychiatric disorders develop. In many cases, like that of Mr. A, people reach medical institutions in serious condition and only after a long delay since onset. In a society where prejudice remains deeply rooted, the date of first medical examination can vary greatly depending on the social support systems available for patients and their families. For example, if Mr. A had received support that first autumn at age 19 (at what could be considered the prodromal stage) and had visited a clinic of psychosomatic medicine (the first medical examination need not be by a psychiatrist), he would have been eligible for a disability pension under the noncontributory plan (in which there is no payment requirement, provided that first medical examination is before age 20). Furthermore, if he had been able to receive support and medical examination while at work, he could have satisfied the payment requirement. It is unreasonable to expect him to have paid premiums without delinquency around the date of first medical examination (after Mr. A quit the company), when his life was confused and shattered. The payment requirement has made life difficult for a great number of disabled people without pension benefits in Japan. However, the nature of mental disorder has exacerbated the situation, resulting in an inordinately great number of disabled people who are without pension benefits.

2. Disability condition requirements and mental disorders

Lagging awareness of what constitutes a disability has had a more serious impact on disability assessment for disability pension than for other types of disabilities. Although disability assessment standards and medical certificate forms have been revised, the assessment has still tended to place a disproportionate emphasis on symptoms. In other words, degrees of disability caused by diseases are not assessed in the context of individual living conditions. For example, as long as Mr. A comes to the workshop regularly, his symptoms are stable. If he is always neatly and cleanly dressed at an outpatient medical examination room, an evaluating doctor will tend to check the "light" boxes for items concerning medical condition and ability to function independently (functional independence) without careful consideration. Unless aid providers other than doctors (e.g., social workers at medical institutions and instructors at workshops) make doctors aware of the specific aspects of disability that require assistance (by inclusion in medical certificates) or unless social workers petition on behalf of the disabled person, whenever necessary, the evaluation score will reflect an incorrectly mild diagnosis or it will be inapplicable at the time of assessment. The aforementioned specific aspects of disabilities, including circumstances of daily life (his mother taking care of his meals, cleaning and washing; the adverse effect that caring for himself would have in terms of going to the workshop; his ability to maintain the rhythm of daily life thanks to his mother waking him up and his commute to the workshop three days a week) and the conditions at the workshop (the instability that would result if he went to the workshop more than three days a week, his susceptibility to fatigue and difficulty in concentrating on work, his need to take a break in the restroom after working only 20 minutes, and changes in work leading to his confusion and causing him to ask the staff repeatedly for confirmation). Also in disability recognition, lack of pension benefits and disadvantageous grades easily occur due to the nature of mental disorders as well as problems of the support system.

3. Problems concerning certificates of the date of first medical examination and medical certificates (used to determine the assessment day of disability)

Although Mr. A considered applying for a disability pension after more than 10 years had passed since the onset of his disorder, there are many people with mental disorders for whom it takes many years to become capable of seeking not only support for their disorders (i.e., medical care), but also support for their disabilities, which is necessary for their daily lives. Mr. A was able to gain a positive attitude toward the system, thanks to the support of employees at the workshop. The aforementioned long period of time, however, creates disadvantageous conditions for receiving disability pension. Since the medical institutions people with mental disorders currently go to are more often than not different from those they went to for their first medical examination, they may be closed or clinical charts may have been destroyed (the statutory retention period for clinical charts is five years) if many years have passed since the date of first medical examination or the date of disability assessment. Such cases result in full loss or reduction of pension benefits (retroactive claims become impossible) because of failure to obtain a certificate of the date of first medical examination and medical certificates as of the date of disability assessment. There are cases in which applications have been accepted from an applicant who uses petitions in place of the certificate of the date of first medical examination and other evidential documents that enable the date of first medical examination to be identified (e.g., patient registration card, receipts and records in housekeeping books). Nonetheless, even when conditions 1 and 2 are satisfied, a great many people have gone without pension benefits or have received reduced benefits due to irregularities in application documents that are certainly not the responsibility of the persons in question.

The present disability pension system has countless problems: operational problems, problems that transcend each disability and problems unique to each disability. These problems can be seen through the state of individuals with mental disorders receiving pension. It is becoming clear that the disability pension system must be improved to prevent disabled people from going without pension benefits. This means not only improving the system to prevent the nonpayment of premiums and problems concerning the storage of medical charts issued by doctors, but also studying ideal disability assessment from welfare perspectives according to the objectives of disability pension (prevention of income declines and economic disadvantages due to disabilities).

The necessity of drastic institutional reform highlighted by lawsuits brought by disabled people who have gone without pension benefits from having failed to register for them during their school days

The presence of disabled people who have been left without pension benefits due to failed registration with the pension system during their school days attests to the deficiencies of the national pension system in delivering benefits to those who deserve them (disabled people without pension benefits because they failed to voluntarily register with the pension system during their school days, before the date of first medical examination, and after they turned 20 years old; Mr. A would have been considered as a disabled student without pension benefits if he had undergone medical examination for his symptoms while he was job hunting). Seven years have passed, however, since such disabled people throughout the nation rose up to campaign for payment of their disability pensions. Thirty such disabled people (eight of them people with mental disorders) are continuing the campaign through lawsuits filed with nine district courts nationwide. Rulings are expected from spring of this year.

Through testimony and written opinions by witnesses at these trials, including scholars, activists for people with disabilities, and plaintiffs and their families, we can reassert that the national pension plan must serve as the core social security system for the public. This is because the national pension covers even those with low income or no income who are unable to join employee pension plans (e.g., employees pension and mutual aid pension plans) and is the social insurance intended to maintain universal pension coverage with social welfare characteristics, such as the introduction of the Disability Basic Pension, which has a premium waiver system and a noncontributory plan for cases in which the date of first medical examination comes before the person in question reaches age 20. While the central government upholds the "insurance principle" (those who fail to pay premiums are ineligible for benefits), we have confidence in the argument that disabled people who are without pension benefits from having failed to register for them during their school days, caused by the failure to predict such problems during the design of institutional arrangements (institutional defects, i.e. outside individual responsibility), should be bailed out by the national pension system in accordance with the original purpose of the system. Based on claims made by plaintiffs and their families who have testified on the witness stand, we have been able to prove the necessity of solving the problem of disabled people who are without pension benefits from having failed to register for them during their school days to support their independence and protect the livelihood of their families with the provision of disability pension, which supports the independence of people with disabilities, as the foundation. This is because income security for the disabled should not be guaranteed by welfare public assistance, which is only for temporary poverty associated with status and support inquiries. Long-term problems associated with disabilities arising from unpredictable injuries and/or diseases cause various hardships in numerous aspects of daily life. Legal and institutional problems have surfaced as problems facing individual daily lives. These are not problems that can be handled through self-efforts or self-responsibility. Problems concerning disabled people who are without pension benefits cannot be solved by eventuating self-responsibility. Aiming also to reconfirm the actual meaning behind the public pension system and restore confidence, we have no choice but to recognize the significance of these lawsuits, i.e., that people with disabilities can galvanize discussion and raise issues.

Support lawsuits for disabled people who have gone without pension benefits from having failed to register for them during their school days!

Lastly, I would like to introduce a message in support of the aforementioned lawsuit from a man in his forties with mental disorders, a plaintiff in one of the these suits.

"Regardless of my disabilities, I still want to lead a normal life."

At college, I lived apart from my parents in an apartment near the college, and I managed to cover school and living expenses with money sent by my parents, scholarship money and income from part-time work. I don't remember it well, but I suddenly started feeling depressed in March of my sophomore year. In May of my junior year, when I was 21, I found myself without a yen to my name and on a train, and was taken into custody in Nagoya. I heard that my parents, who came to pick me up, were appalled to see me so gaunt that they could hardly recognize me. Accompanied by my parents, I visited a psychiatrist, was diagnosed with schizophrenia and was hospitalized on the same day.

Later, I returned to college and managed to graduate. Although I landed a job, I couldn't hold it, because I got ill immediately afterwards. I've been repeatedly hospitalized during the 22 years since the onset of my illness. My illness has transformed the lives of my family. To support my recovery and the livelihood of my family, my elder sister postponed her marriage, which had already been scheduled. My father had to work at jobs like cleaning condominiums until he turned 70 because I had no income. If my father's life were to be shortened due to illness, it would be because he had to support me as a result of my lack of income.

The difference in my personality between before and after the onset of my schizophrenia was like night and day. I cursed my illness. Still, I wanted to become independent, so I did my best, working at a workshop or taking other part-time jobs. But whatever I did, nothing went well. Every time I failed, I felt pressed: I should have done better. What will become of me? I pushed myself too much, causing the illness to recur ? sometimes leading to rehospitalization. I was caught in a vicious cycle. I felt like a coward because of my fear of becoming more ill by trying to return to society, so I shut myself in at home.

I wanted to receive disability pension no matter what, find peace and relieve myself from the constant pressure. Anyone, even a student, who has suffered disability before age 20 is eligible for the Disability Basic Pension. But not I. There's no way I can accept that. Back then, I didn't know that students could opt to join the pension system or that those who didn't join and who then suffered disabilities would be without pension benefits. Even if I had known, I wouldn't have been able to pay the premiums. My parents couldn't afford it, after paying my school expenses and sending me money. Without any waiver systems, I wonder if it was exceptional for students in those days to remain unregistered since registration was voluntary registration. The penalty for inadvertently remaining unregistered without knowledge is too harsh.

I spent every day feeling worn out and hopeless about my future. The campaign for disabled people who are without pension benefits from having failed to register for them during their school days has given me with the strength to live in a positive manner. I believe that economic security will allow many people with disabilities to live more positively and to explore their abilities. Nobody gets ill by choice. Economic instability is serious for those of us who have to live with disabilities. I'm not asking for much. I simply want to lead a normal life despite my disability.

The lawsuit has passed the halfway point, and I've been supported by so many people. The most important thing for me right now is to see widespread cooperation. I wish for as many people as possible to emphasize with our campaign.

References

References useful for people with mental disorders regarding the utilization of disability pension

• "Method of Claiming Disability Pension and Explanation for People with Mental Disorders"; Chuohoki Publishers; edited by the Research Council for Pension Issues, the National Federation of Families with the Mentally Ill in Japan (Zenkaren) (Revised edition slated for April 2004)
• "New Edition: Welfare System Manual for People with Mental Disorders"; the National Federation of Families with the Mentally Ill in Japan (Zenkaren)
• "Zenkaren Extra: Information on Regional Mental Health and Welfare Review No. 47"; the National Federation of Families with the Mentally Ill in Japan (Zenkaren)

References regarding problems concerning disabled people without pension benefits and lawsuits for disabled people who are without pension benefits from having failed to register for them during their school days

• "Easy-to-Understand Disability Pension - from How to Receive it to Prospects for System Improvement"; edited by the Council for the Promotion of Disability Pension Revision
• "No pension? Learning about Disabled People without Pension Benefits"; Creates Kamogawa; edited by the National Liaison Council for Lawsuits for Disabled People Who Are Without Pension Benefits from Having Failed to Register for Them During Their School Days
• "Normalization Welfare of People with Disabilities (June 2003)"; Japanese Society for Rehabilitation of Persons with Disabilities
• "Written Opinions about the Case over Petition for Cancellation of Determination of Disability Pension Nonpayment (Lawsuits for Disabled People Who Are Without Pension Benefits from Having Failed to Register for Them During Their School Days)" Professor Mihoko Ikesue, Faculty of Social Welfare, Nihon Fukushi University
  Okuda, Mihama-cho, Chita-gun, Aichi 470-3295
  Tel: 0569- 87-2341 (ex. 6199) Fax: 0569-87-1690

Contact regarding the lawsuit for disabled people who are without pension benefits from having failed to register for them during their school days

National Liaison Council for Lawsuits for Disabled People Who Are Without Pension Benefits from Having Failed to Register for Them During Their School Days

c/o National Conference to Support the Life and Rights of Disabled Persons
Japan Center for People with Disabilities
Fuji Bldg. 4F, 1-1-2, Okubo, Shinjuku Ward, Tokyo 169-0072
Tel: 03-3207-5937 Fax: 03-3207-5938