Handojo Tjandrakusuma

Dr. Handojo Tjandrakusuma, a medical doctor, has created systems that engage multiple stakeholders at different levels to ensure that the disabled in Indonesia and around the world have the opportunity to maximize their quality of life.

The majority of Indonesia’s disabled children live in the rural areas of the nation; despite this fact, assistance for the disabled in rural areas was not available. Handojo introduced a system for community-based rehabilitation where families and other community members actively participate in the early detection and mobilization of funds in order to provide the necessary treatment and promote the inclusion of disabled (Handojo likes to use the term “diffabled,” or “differently-abled”) children in all spheres of life and activities. He integrates the new framework into existing service delivery systems so that his organization can better impact all those in need, especially those in rural areas. Handojo has made the rehabilitation services available at the community level and set up community coordinating institutions to make it sustainable.

Handojo integrates his community-based rehabilitation service into already existing Village Health Post (Posyandu) and Community Health Centers (Puskesmas). He mobilizes health providers and village health cadres to be able to conduct early detection in child development and deploy referral services. Handojo has also developed manuals for early detection diagnosis and a referral mechanism, as well as set up training for village health cadres and health professionals. Starting from a single health sector, the idea has evolved into influencing multisector change that empowers the disabled to access and benefit from education, employment, health, and social services as well as engaging people with disabilities, their families, organizations and communities, relevant government and non-government health partners, all through education, vocational, social and other services.

To further meet disabled rights to quality of life, Handojo found a new challenge in the tourism industry, which when he began working, was not at all amenable to the disabled. In early 2000, Handojo started to develop a restructuring of the tourism business platform by engaging international tourism stakeholders in a concept discussion. He established, RENA for Barrier-Free Tourism, for the disabled and the elderly. Handojo envisions a global tourism industry that has disabled-friendly infrastructures, recruits the disabled as a potential workforce and integrates new curriculum in schools of tourism on barrier-free tourism.

The World Health Organization (WHO) estimates 7 to 10 percent of Indonesia’s population lives with disabilities, and around 2 percent still need rehabilitation services. However, there is only 0.01 percent to 0.02 percent of the population in Indonesia that actually receives these services. The rest of the disabled population is hindered by distance to treatment, poverty, and a government policy that does not fully take into account Indonesia’s rural poor, which make up 80 percent of the population. The Departments of Health, Social Affairs and Education had existing programs that assisted disabled people in various ways. In addition to these government programs, there were citizen organizations (COs), which supplemented these services. They were responsible for running special schools and training centers for the blind, deaf, and mentally challenged; rehabilitation centers specializing in orthopedic conditions and other therapy centers. However, most of these rehabilitation services are located in cities. Poverty has prevented people in rural areas from accessing this care. Transportation is expensive and doctors are unwilling to practice in relatively isolated places.

Rehabilitation services are often viewed only in terms of the medical, educational, vocational, and social services delivered directly to individuals with disabilities. While these are clearly critical elements of rehabilitation, existing services often fail to account for the need for disabled individuals to engage in the physical and social environment in their community. In addition, there are deep-seated social and cultural norms toward the disabled that remain as obstacles to full integration into their larger communities. Because of these stigmas, existing service providers for the disabled often must wait for clients to come in for treatment instead of service-providers reaching out to clients. Rehabilitation services also include both preventative and curative treatment measures. Existing service providers in Indonesia have failed to make these important distinctions clear and accessible to people in rural parts of the country.

Coverage of services for disability prevention and rehabilitation need to be expanded, as the disabled are everywhere in Indonesia, not just in major urban areas with treatment facilities. However, an increase in only the government and nongovernment services would be ineffective since under the current approach, the involvement of the broader community would be minimal. In addition, the tourism industry in Indonesia is inhospitable to disabled tourists. For example, not all hotels and airports have accessible ramps or toilets. This lack of access affects not only disabled tourists but also disabled workers in the tourism industry, leaving many skilled workers unable to find employment simply because they have limited access to their jobs. Additionally, curriculum on barrier-free tourism is not available in the country’s major schools of tourism, despite the fact that such courses exist outside of Indonesia.

Handojo suspected early on that the rehabilitation centers he was working with did not serve the disabled who were living in rural areas, often in poverty. After mapping the origins of the patients he was treating with cerebral palsy, he concluded that indeed his initial observation was correct. Following his findings, Handojo started the Community Based Rehabilitation Development and Training Centre (CBR/Pusat Pengembangan dan Latihan Rehabilitasi Bersumberdaya Masyarakat) in 1979 to serve the disabled in impoverished rural areas.

Handojo designed CBR not only for individuals needing rehabilitation but also to provide a space for community adoption of disability prevention and rehabilitation. Community participation has become an integral part of CBR’s strategy; the community now has the role of helping to detect disabilities and raise funds for treatment options of those needing rehabilitation. The communities are trained to be able to identify the needs of a disabled person. Then, they determine the appropriate method of rehabilitation and fulfill that need with locally available resources. By creating a train-the-trainers methodology, Handojo empowers families and the village health cadres to understand the types of disability according to the medical approach, how to do early detection and know how to deploy a referral mechanism and go to the appropriate rehabilitation center in accordance to the type of disability. Handojo then expanded the CBR strategies to fit the social, cultural, and economic situation of broader Indonesian society.

To Handojo, CBR is not just a way to help people who are disabled. It is also a process of empowerment, which enables community members, including people with disabilities, to cooperatively and actively participate in their own decision-making process. The community is involved in deciding its own needs, rather than having ideas imposed on them from the outside. This feature is critical for understanding the success of CBR. Those who wish to be implementers of CBR must only introduce the idea of CBR and then permit the villagers to determine what the implementation and idea means to them and how it could best be used in their community. Facilitating communities in their autonomy is what makes the CBR model so unique. This concept is about community development in the field of disability prevention, rehabilitation, and improvement in the quality of life. Under the CBR model, the community acts as both the main resource and as the main agent responsible for program implementation.

To ensure the success of the program in every community, Handojo develops an effective program entry, which by design is easy to implement, has visible results, and is easy to integrate into existing programs. The program must be relevant to community needs and based on resources from within the community. Any person or organization that wants to implement CBR is in fact a “change agent.” Behavior change in the community only occurs when a “change agent” effectively introduces new knowledge and skills that contribute to positive changes in the community. The objective of the changes is that the community can reach a certain behavior level that supports disability prevention and rehabilitation activities. One major obstacle to the successful implementation of the CBR model across Indonesia is how to overcome a lack of resources and coordination problems. Handojo had the insight to try to match CBR into pre-existing community activities. He found it too expensive and complicated to develop a separate infrastructure for community-based disability prevention and rehabilitation. He then facilitated the integration of CBR cadres and early detection (ED) into the existing Village Health Post (National Mother and Child Health Programme) and the government’s Community Health Centre system; Handojo found this solution to be practical and sustainable. Those in the community who were active in the local government and institutions were employed in organizational and managerial capacities. A great deal of effort was involved in changing community behavior (i.e. attitude, knowledge and skills). These changes enabled community members to have a better understanding of disability issues (i.e. socioeconomic, sociocultural, medical, and psychological), provide a positive environment (physical, psychological, sociocultural, and economic) and be responsible for improving the quality of life of people with different abilities.

The main ED programs were primarily education programs for communities and training programs for medical staff. The education program was informative and oriented the target audiences of women’s organizations/groups/CBR cadres to ED in the villages. The objective of this strategy is to develop cadres who would be able to pass on this information to other women’s organizations/groups, the Village Health Post and the Community Health Centers. Meanwhile, the medical staff training is aimed at recipients being able to train others and expand and conduct ED, particularly in the village programs. Income generation has also become part of the strategy. Handojo found vocational rehabilitation too narrow and that it often did not focus sufficiently on the economic situation of the community marketplace that diffabled persons returned to. The focus of CBR implementation needed to be broader than just the disabilities of a person. It needed to also include their capability for income generation. The technological activities were aimed at the grassroots level community members who were provided with knowledge and skills that they would employ in practical ways; providing the disabled with life skills to earn a living in the community.

To bring about widespread impact, Handojo recognized the importance of engaging numerous sectors of society with various degrees of knowledge and experience, both professional and non-professional. The model has become a framework through which professionals and non-professionals could work together in a CBR program providing multifaceted contributions. Local government personnel formed a CBR coordinating team. The purpose of this body is to manage activities such as developing and administering financial resources and organizing disability reassessment days. Handojo also attached CBR services to existing national programs, which had national high priority, such as primary healthcare and nutrition programs at the local level. From January 1994 to December 1995, ED programs were implemented in 18 villages in the districts of Surakarta, Central Java with funding from the Sasakawa award. Through CBR has successfully published a four-volume manual on Early Detection of Disability for children under five. Handojo has also produced posters depicting normal growth in children under five years old, as well as a manual that helps guide treatment for disabled children suffering from cerebral palsy, mental retardation, and other conditions. Due to the success of the model, the WHO adopted the model and replicated in different countries.

From the CBR program that he initiated, Handojo learned that the essence of the program was to improve the quality of life for the diffabled in every sector. His love for travel led him to see the inequality for the diffabled in the tourism field. As the Director of the CBR Training Centre, and with the support of Nippon Foundation and United Nations Economic and Social Commission for Asia and the Pacific, Handojo organized the Asia Pacific Conference on Tourism for People with Disability in Bali, and was chairperson of the conference committee in the year 2000. Two hundred participants attended the conference, coming from all over Asia, in places like Australia, Cambodia, China, Japan, and the Philippines to name a few. They were all from various sectors, including persons with disabilities, tourism officials, tourism industry representatives, and human resources development experts from hospitality management institutions. Additionally, there were three resource persons from Peru, Singapore, and South Africa. Their expertise covered the following areas: promotion of the rights of persons with disabilities, and citizens’ participation on accessibility issues, training persons with disabilities as trainers on the conduct of access surveys, access-related awareness-raising among professionals responsible for the design and maintenance of the built environment, and barrier-free design and its strategic application. This successful conference revealed the global concern around the issue of barrier-free tourism. As a result, Handojo prepared a roadmap which includes capacity building to increase the knowledge and skills of professional staffs in charge on the implementation and development of Barrier-Free Tourism, as well as plans to establish a centre of information, research and training of Barrier-Free Tourism and to include it in the basic curriculum of formal tourism education.

Handojo was born in Pacitan, East Java. He came from a big family of eight and his parents were merchants. Coming from a big family, he was used to taking care of his brothers and sisters. Handojo was sent to live alone in a boarding house in Semarang during his middle school years, and had to take care of himself. He entered medical school and was active in student organizations, taking part in social activities in the community. Handojo graduated in 1965 from the Faculty of Medicine, Airlangga University, Surabaya, Indonesia and returned to his hometown of Solo to care for his aging parents, while working at the Rehabilitation Center.

Handojo worked under Dr. Soeharso, Director of the Rehabilitation Center. Over time he was more interested in the service, and eventually fell in love with his work. After three months of serving in the RC, Handojo closed his private practice in the afternoon—though his practice was quite popular. Many of his peers thought he was making a poor financial decision to work for the disabled. Since 1965, Handojo also held the post of Director of the Academy of Physiotherapy (Ministry of Health) in his hometown Surakarta, Indonesia. In 1970, he attended the WHO Upgrading Course on Medical Rehabilitation, Lebanon. In 1972, under the umbrella of the Children’s Rehabilitation Foundation of Indonesia, Handojo founded the Council for Cerebral Palsy (CP) in Indonesia and became its first Director. He learned about the rehabilitation service disparities between cities and rural villages. Handojo then developed the Community Base Rehabilitation and set up an independent organization.

For his work developing CBR programs, Handojo received the Sasakawa Health Prize from the WHO in 1992 and a similar recognition from Alberta University, Canada. His work in welfare is also well recognized in Indonesia. In 1998, he received the Ministerial Award from the Minister of Social Welfare for pioneering work and outstanding service in social welfare. In 1999, the Indonesia National Council of Welfare appreciated his dedication and work for the welfare of people with disability. His love for traveling led him to initiate diffabled friendly tourism. In 2004, he resigned from CBR DTC Training Centre and trained the next director to continue his mission. Handojo is still very active as the chairperson of the boards of several foundations such as the Panti Kosala Foundation, which runs three hospitals; the Warga Education Foundation, a vocational school that helps invest in technology for the disabled, the National Pharmacy Foundation, and as the advisor to the Jakarta School of Orthotics and Prosthetics. In January, Handojo was invited by the Physiotherapy Association in Japan to talk about the new approach for CBR, including the introduction of Barrier-Free Tourism.