Kaori Iwasaki
Waseda University

1. What is Peer Support?

In the area of welfare for persons with disabilities, the term “peer support” has probably been heard more often recently. It may be partly because the FY2020 revision of the compensation for welfare services for persons with disabilities allowed an additional fee for peer supporters. However, this does not mean that peer support is a system unique to the field of persons with disabilities. Originally, peer support meant mutual support among peers, and it has been actively implemented in schools, medical facilities, and many other areas for a long time. The effectiveness of peer support lies in the fact that people with similar experiences can enhance their ability to live more fully by talking and sharing their experiences with each other.

2. History of Peer Support in the Field of Persons with Disabilities

It is said that the history of peer support activities for people with disabilities dates back to the 18th century. Examples often cited, however, include the mental hygiene movement started by Clifford Beers, who in 1907 published his own experience of being hospitalized in a psychiatric hospital in the U.S., and the Alcoholics Anonymous (AA) self-help group established in 1935. In the U.S. since the 1950s, against the backdrop of the civil rights movement, the Independent Living Movement of persons with physical disabilities, led by Ed Roberts and others, has expanded, thus greatly influencing Japan’s peer counseling program centering on the Center for Independent Living. Since 2000, recovery-oriented services have been attracting attention, and certified peer specialists have been positioned within the mental health system. Activities related to the human rights of people with disabilities and the use of peer support were also a sign that rehabilitation and welfare services, which had previously been led by supporters, were being shifted to center on people with disabilities. Since the 1980s, a variety of peer support activities have been developed throughout Japan, starting with patient groups and self-help groups based in medical institutions and communities. Along with the growing interest in the concept of “recovery,” the national policy shift from a focus on inpatient care to a focus on community life took place, and peer supporters began to play an active role in assisting long-term hospitalized patients from psychiatric hospitals. With the recent reorganization of disability welfare services aimed at the ratification of the Convention on the Rights of Persons with Disabilities, and the growing awareness of human rights and entitlements, an increasing number of people wish to participate in providing welfare services by making use of their own experiences.

3. Collaboration between Peer Supporters and Professionals – Creating the Mechanism

In the field of mental disabilities, the “Discharge Promotion Support Program for Persons with Mental Disabilities” was launched in 2003 as a government program. Since then, the name of the program had been changed several times, yet the number of paid peer supporters who work under titles like “independence support staff” to support patients discharged from psychiatric hospitals has increased. The collaboration between professionals and peer supporters in supporting the discharge of long-term hospitalized patients has developed in many places.

The beginning of the national peer support training program for persons with disabilities being implemented currently was the outcome of the “Research on Training to Enhance the Expertise of Peer Support for Persons with Disabilities” (1) which was conducted from FY2016 to FY2018 as part of the Comprehensive Research on Disability Policy under the Research on Measures for Diseases and Disabilities funded by the Health and Labor Sciences Research Grant. During the following two years, the “Research on the Training and Dissemination of Human Resources Who Can Serve as Instructors for Training to Enhance the Expertise of Peer Support for Persons with Disabilities,” which was also funded by the same Grant, was conducted with almost the same constituent members. During this period, textbooks for basic training, specialized training, follow-up training, as well as an easy-to-understand version of the basic training textbook, were also prepared. In addition, a program was created relative to the training of instructors and facilitators to disseminate it, thus completing the five-year study.

In parallel, I was also involved in the “Research and Study to Promote the Utilization of Human Resources for Peer Support and to Create Guidelines,” a project promoting the comprehensive welfare of persons with disabilities by the Ministry of Health, Labour and Welfare in FY2018. During this time, I was involved in the “Research and Study for the Utilization of Human Resources for Peer Support by Type of Disability for Welfare Services to Persons with Disabilities,” (2) under the same project by the Ministry in FY2019, with the cooperation of many people. In the survey, many of them said that the encounter with peer supporters made them want to work, thus giving them dreams and courage. A peer supporter who came to the hospital said, “I had been staying in the hospital for more than 20 years, and I had given up on being discharged from the hospital, yet I thought that being discharged might one day occur; so here I am for you, visiting the hospital as a peer supporter with my friends.” This story may be entitled as “the role of a peer supporter as a model,” which can create an impact that can change a person’s life.

While there is such a case as mentioned above, we still cannot say that a system is in place where peer supporters hired as staff members can stay on the job. Unfortunately, not a few professionals working in the welfare and medical sectors also have discriminatory attitudes and prejudices against people with disabilities. Although the provision of reasonable accommodation in the workplace is obligatory, there are many issues to be addressed in terms of creating an environment where peer supporters can demonstrate their effectiveness.

In addition, the involvement of peer supporters does not always have positive effects. There is a risk of over-sympathizing by sharing experiences, and ethical issues such as the handling of personal information may surface. Furthermore, it is often pointed out that peer supporters themselves, more than anyone else, struggle with the duality of being both a person with a disability and a supporter. In order to make the most of their experiences as persons with disabilities, peer supporters need a work environment that can accommodate such risks. Having similar experiences is a peer supporter’s great strength, and seeing people with disabilities at work by making use of their experiences is a great source of hope. In order to achieve such effects, collaboration between peer supporters and professionals is called for.

4. The Future of Peer Supporters

Peer support training programs for persons with disabilities have been available to prefectures and government ordinance-designated cities since FY2020; and since FY2021, the number of local governments that have implemented or are considering implementing training programs has been increasing as the deployment of peer supporters has become compensated.

When considering a training program for peer supporters with disabilities, two things have been proven important:
・To structure the basic part of the peer support training, which has been organized for each disability, as a common curriculum; and
・To attend trainings together with the staff they work with or are going to work with to deepen their understanding of peer support.

According to the results of the aforementioned survey conducted for the project to promote the comprehensive welfare of persons with disabilities by the same Ministry, the staff members in the same workplace often stated that they came to have a deeper understanding of persons with disabilities and that they came to believe in the potential of persons with disabilities as the effects of working together with peer supporters. During the basic training, I felt that this is true not only for supporters, but also for persons with disabilities. Many persons with disabilities responded that it was a new experience for them to discuss in the same group with persons with different disabilities in a vertically structured environment. The division of people with or without disabilities has been regarded as an international issue in the field of education, and I have since realized that we also had a history of division among people with disabilities according to their type of disability.

As we enter into an era of comprehensive community care and an inclusive society, the number of peer supporters active in the medical, health and welfare fields is expected to increase in the future. Peer support training for persons with disabilities is expected to guarantee the quality of peer supporters to a certain degree and contribute to improving the quality of welfare services as a whole by enhancing support centered on persons with disabilities.

However, peer support training programs for persons with disabilities have not been implemented in all prefectures and the cities designated by government ordinance, and there are issues to be addressed, such as a shortage of training instructors and facilitators, as well as challenges to the provision of reasonable accommodation, to name a few. The training programs for peer supporters and the calculation of their remuneration are just the beginning. The true value of peer supporters will be tested from now on.

[References]

(1) Database of Scientific Research Results, Ministry of Health, Labour and Welfare, FY 2016, Research on Training to Enhance the Expertise of Peer Support for Persons with Disabilities, Principal Researcher: Kaoru Iwasaki, Waseda University
https://mhlw-grants.niph.go.jp/project/26077

(2) Please refer to the page on the projects of Hoshinkai, a social welfare corporation, commissioned by the Ministry of Health, Labour and Welfare to promote the comprehensive welfare of persons with disabilities. http://housinkai.or.jp/about/tabid/126/Default.aspx

Edited and published by the Japanese Society for Rehabilitation of Persons with Disabilities.

Published on April 25th, 2023.