Authors: Peni Kusumastuti, Dr PMR Rosiana Pradanasari, Dr PMR Anita Ratnawati, Dr PMR

Health Policy

Affiliations: From the Medical Rehabilitation Department, Fatmawati Hospital, Jakarta, Indonesia (PK); Fatmawati Hospital, Jakarta, Indonesia (RP); and Persahabatan Hospital, Jakarta, Indonesia (AR).

ANALYSIS

Correspondence:

The Problems of People with Disability in Indonesia and What Is Being Learned from the World Report on Disability

All correspondence and requests for reprints should be addressed to: Peni Kusumastuti, Dr PMR, Medical Rehabilitation Department, Fatmawati Hospital, Jakarta, Indonesia.

Disclosures: Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article.

0894-9115/14/9301(Suppl)-S63/0 American Journal of Physical Medicine & Rehabilitation Copyright * 2013 by Lippincott Williams & Wilkins DOI: 10.1097/PHM.0000000000000025

ABSTRACT Kusumastuti P, Pradanasari R, Ratnawati A: The problems of people with disability in Indonesia and what is being learned from the world report on disability. Am J Phys Med Rehabil 2014;93(Suppl):S63YS67. Recent epidemiologic findings indicate that 1.8% of the Indonesian population Bhave extreme problems[ and 19.5% Bhave problems[ in various aspects of their ability to carry out daily activities. People with disability (PWD) have a high risk for poverty in Indonesia, and there are strong prejudices that presume unproductivity and dependency. Disability policies are integrated through a National Plan of Action. However, the existing number of human resources in the field of medical rehabilitation is still too low compared with the existing needs. This is true also for the budget for rehabilitation services. Several issues are identified that need action to improve the inclusion of PWD and to ensure their dignity including supporting a perception of PWD as active and equal citizens, assessing accurate data about the disability prevalence, strengthening organizations of PWD, building educational capacities for PWD, developing preventive strategies, and international cooperation. Key Words:

Rehabilitation, Persons with Disability, Epidemiology, Policy

I

n Indonesia, people with disability (PWD) are often considered as unproductive citizens, which leads to a neglect of their rights. Compared with other countries, the number of PWD in Indonesia is slightly higher. This could be caused by several conditions such as (1) poor knowledge of health care including the knowledge of healthy life during premarital age, pregnancy, delivery, and child development; (2) lack of traffic and occupational safety; (3) infection endemic problems such as tuberculosis and leprosy; (4) vitamin deficiencies or malnourishment as a result of poverty; (5) high incidence of cancer and degenerative diseases such as strokes, arthrosis, and diabetes mellitus; (6) higher probabilities of disasters such as earthquake, volcano, and tsunami; (7) the size of Indonesia, which consists of 17,504 islands with a population of 240 million,1 resulting in problems with healthcare services and prevention of disability. www.ajpmr.com

People with Disability in Indonesia Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

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WHAT IS THE PROBLEM? Burden of Disability The exact number of PWD in Indonesia is unknown. On the basis of a collaborative study of the Ministry of Health and the World Health Organization in 1975, it was estimated that the proportion of PWD in Indonesia was 10%Y12%. In 2007, the Indonesian Basic Health Research Project used the ICF criteria and took a sample of people at least 15 yrs of age. The findings showed that 1.8% of the population stated that they Bhave extreme problems,[ and 19.5% stated that they Bhave problems[ in various aspects of their ability to carry out daily activities. The prevalence of those who Bhave problems[ in cleaning their bodies and dressing themselves was 3%. The National Socioeconomic Survey Susenas conducted by the Indonesian Central Statistics Agency found the following frequencies of disability categories: 15.9%, blindness; 10.5%, deafness; 7.1%, muteness; 3.5%, muteness/deafness; 33.8%, physical impairment; 13.7%, mental retardation; 7.0%, physical impairment and mental retardation or other multiple disabilities; and 8.5%, mental disability (psychiatric/psychologic). More recent data of the Indonesian Central Statistics Agency survey also show that PWD are at risk for poverty (Table 1).

Need for Rehabilitation Medical rehabilitation is not recognized by Indonesian citizens, although in 1970, the Indonesian government declared the importance of medical rehabilitation and instructed that medical rehabilitation services should be provided in all government hospitals. This lack of awareness among the population could be caused by several reasons including (1) budget shortages in healthcare priority services, leading to the use of resources for lifesaving measures and not for services that improve

function and overcome disability; (2) the cultural belief among Indonesians that having a child with disability is disgraceful; in special cases, such as mental and emotional disability, this may cause serious hindrances to participation, particularly caused by stigma and discrimination, so that PWD do not try to seek rehabilitation services but rather live under these conditions; (3) people still believe in and prefer to go to traditional or native healers, especially in rural areas; and (4) the mind-set among some PWD to pursue social support rather than to be independent and productive. More recently, the need for medical rehabilitation has increased particularly among those living in the city, although most of them seek medical rehabilitation for walking ability rather than to become independent in all of their daily activities. The medical rehabilitation services in Indonesia are still integrated with other health services in general hospitals where basic rehabilitation services are provided but not focused on specific disabilities. The rehabilitation services for poor people are covered by government insurance. Unfortunately, this insurance does not include rehabilitation aids for ambulation (wheelchairs, cane, and walker), aids for activities of daily living, orthotics, or prosthetic devices. Comprehensive medical rehabilitation for specific problems such as rehabilitation for spinal cord injury, stroke, or other neurologic conditions, which need a multidisciplinary rehabilitation team, is available only in certain hospitals in big cities. The number and the specialization of human resources are not equal for the whole country. Most physical medicine and rehabilitation (PMR) specialists work in the big cities of Java Island. Allied health professionals such as physiotherapists are well distributed throughout the country, but this is not the case for occupational therapists and speech therapists. There is also a very limited number of social workers and psychologists in hospitals.

TABLE 1 The number of PWD according to their poverty status Poverty Status Type of Disability

Extremely Poor

Poor

Near Poor

Total

Blind Deaf Mute Deaf and mute Physical disability Paralysis Mental disability Total disability

46,146 24,746 20,678 7,616 51,857 19,985 39,439 210,467

82,242 54,747 33,822 13,700 106,042 42,167 76,280 409,000

78,699 66,468 27,054 12,703 116,981 45,755 66,571 414,231

207,087 145,961 81,554 34,019 274,880 107,907 182,290 1,033,698

Source: The Indonesian Statistics Agency 2008.

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Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

WHAT HAS BEEN DONE? Policies and Legislation National Plan of Action In Indonesia, work on disability is integrated with other sectors through the National Plan of Action on PWD 2004-2013. The National Plan of Action has eight priorities: 1. Establishment of self-supporting organizations for PWD and associations of families and parents of children with disability 2. Improvement of the welfare of women with disabilities 3. Early detection of and early intervention as well as education for PWD 4. Training and placement of workers with disabilities 5. Access for people with disability to public facilities and transportation 6. Accessibility of people with disability to information, communications, and technology, including assistive technology 7. Poverty alleviation and improvement of social security protection and livelihoods 8. International cooperation and human rights

secondary legal instruments to allow their implementation, including government, ministerial regulations, ministerial circulars and local ordinances, and all regulators at lower levels.

Funding Mechanisms in Rehabilitation The budget for PWD is allocated to the Ministry of Social Affairs as part of the budget for social service and rehabilitation. The largest allocation (73% of the available funds) is for the provision of social assistance or social security for Bpeople with severe disability[ or irreversible disabilities. The remaining funds are used to build infrastructure and develop human resources. Because the budget for other purposes is so low, the quality of services in many programs for PWD is not ideal. Most social workers do not have professional training, and most of those with training are assigned to office work. The same problem occurs in training units for PWD, which cannot build their capacity because of limited financial and human resources.

Human Resources Laws and Policies Concerning PWD Indonesia has a number of laws and regulations, such as (1) Law No. 4 of 1997 concerning PWD. These laws make it clear that equality and nondiscrimination are important to facilitate access for PWD. However, the implementation of these laws is far from desirable. The law prescribes rights of PWD in education; employment; equality in development; and the enjoyment of the results of development, accessibility, rehabilitation, and social welfare as well as equality in the development of aptitudes and social life; (2) Law No. 23 of 2002 concerning child protection regulates issues involving children with disability. This law covers special protection, the right to education (either regular education or special education), social welfare, the right to be treated the same as other children to achieve the highest possible social integration, and individual development. (3) Indonesia’s Law No. 11 of 2009 concerning social welfare stipulates that PWD are considered as members of society who have problems and social dysfunction. The application of the term social dysfunction to PWD poses some problems. It creates multiple discriminations against PWD because by using the terms have problems and social dysfunction, the government identifies PWD as people who cannot comprehensively participate and function in society. However, the legal provisions and their implementation at the local community level require www.ajpmr.com

The existing number of human resources in the field of medical rehabilitation is still too low as compared with the population of PWD. The number of PMR specialists in Indonesia is 380. Five universities with PMR residency training programs graduate approximately 20 PMR specialists every year. To fulfill the need for PMR specialists in the province, the Ministry of Health conducted the TUBEL program, which had given the provincial governments the opportunity to send local general practitioners to a PMR residency training program paid by the Ministry of Health. After graduation, these specialists must return and work in their local province. The number of physiotherapists is more than 3500, with 35 education centers. The number of occupational therapists is approximately 200, but only two education centers exist in the country. The number of speech therapists is approximately 160, with three education centers. There are approximately 30 certified prosthetists and orthotists graduates of two education centers, and there is a very small number of certified social workers.

Service Delivery In Indonesia, services for PWD are primarily the responsibility of the Indonesian Ministry of Social Affairs. These services comprise noninstitutional and institution-based services as well as several support and welfare services. People with Disability in Indonesia

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

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NonYinstitution-based Social Rehabilitation 1. Social Service Mobile Unit: It is a mobile service unit aiming to reach PWD or people with social disadvantages living in villages so that they can obtain social welfare services as early and as quickly as possible. These units are available in 33 provinces. 2. Loka Bina Karya: Loka Bina Karya is focused on skills training. The beneficiaries of Loka Bina Karya are people with a minor disability. In the era of regional autonomy, there are 321 Loka Bina Karya units, which are managed by governments of districts or cities.

Institution-Based Social Rehabilitation There are 19 Technical Implementation Units in the form of rehabilitation centers and two national centers, which are managed by the Ministry of Social Affairs. These function as institutions for providing services and rehabilitation for people who are blind, deaf, and mute; those with physical disability; those with a disability from a chronic illness; those with mental retardation; or patients with mental illness (commonly schizophrenia) who are no longer in treatment (not institutionalized). Centerbased social rehabilitation services are also delivered through day-care systems and special outreach programs. In addition, the centers are also used as referral centers for services for PWD under the family- or community-based rehabilitation programs and Mobile Unit Programs.

Community-Based Rehabilitation (Rehabilitasi Basis Masyarakat)

tion, violence, or disasters as well as people who acquired their disability as a result of a disaster.

Social Security for People with Severe Disability This is a nonconditional allowance to maintain the livelihood and welfare of people whose disability cannot be rehabilitated, who are unable to carry out their daily activities unless someone is there to help them, who do not live in the center, and who are unable to sustain themselves and come from poor families.

Food Allowance for PWD in the Shelters This program provides food allowances for PWD who live in shelters, which are run by local governments and communities.

Referral System The rehabilitation services are scattered in the rural area, but community-based rehabilitation exists in most areas. The basic rehabilitation service is provided in the primary healthcare system by therapists. The referral system for people who need rehabilitation services is illustrated in Figure 1.

Affordable Technology Many equipments, aids, and technologies are needed by PWD to enhance their level of independence. Standard wheelchairs are available. However, the production of wheelchairs is still a manual process. Therefore, the safety and the comfort of these wheelchairs need to be improved. Information technology can be used to enhance the independence of

The community-based rehabilitation program Rehabilitasi Basis Masyarakat is intended to mobilize the community to provide support and assistance to PWD and their families. Their main activities are detecting early disability and referring PWD for assistance according to their needs.

Social Assistance for Social Organizations Working on Disability Issues Social assistance for organizations aims to extend the outreach of social services and rehabilitation for PWD. In 2009, social assistance for organizations was given to 27 social organizations (25 organizations of PWD and 2 centers dealing with people with multiple disabilities).

Emergency Assistance Emergency assistance is aimed at PWD who experience abandonment, discrimination, exploita-

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FIGURE 1 Medical rehabilitation referral system.2 CBR, community-based rehabilitation.

Am. J. Phys. Med. Rehabil. & Vol. 93, No. 1 (Suppl), January 2014

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

PWD. The use of Internet for communications, up-todate information, and knowledge may also improve their productivity.

Research and Evidence-Based Practice Research in the medical rehabilitation field is limited and is mostly related to the study of outcomes in the clinical setting.

7.

CONCLUSIONS In the context of the World Report on Disability and considering the current situation in Indonesia, several issues that need actions could be identified to improve the inclusion of PWD and to ensure their dignity. 1. There has to be a change of paradigm concerning PWD. The idea that PWD are merely the object of charity, medical treatment, and social protection has changed to a perspective that regards PWD as subjects who have rights, are able to strive for their rights, and are able to freely make life decisions as active members of society. 2. Implementation of the law concerning the rights of PWD, including health and rehabilitation services, must be enforced. 3. PWD usually have many health problems and need to be treated properly. This includes the availability of rehabilitation aids to improve optimal function, achieve independence, and support themselves. Any concerted effort to improve and strengthen the health system should consider disability as a priority issue. 4. Accurate data are the primary requirement to develop appropriate programs and policies for PWD. Data on disability must be regarded as a cross-sectoral issue and should be derived free from any sectoral interests. The issue of data on disability must be treated as part of the bureaucratic reform and access to justice. 5. Training and empowerment programs, which are run by the Ministry of Social Affairs and other relevant ministries, should be reviewed to find out about existing opportunities and constraints. Disability-specific programs should be implemented in proportion with mainstream programs. 6. Organizations of people with disability have the potential to work as partners of the government in empowering PWD. The organiza-

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8.

9.

10.

tional capacity and network of organizations of people with disability should be strengthened as a necessary strategic step to form strong groups of organizations of people with disability that can act as development partners to empower PWD. Efforts to raise public awareness, to strengthen the role of PWD in national development, and to build expertise in dealing with disability issues require specialized practitioners and research. The universities should develop courses or studies on disability and conduct research on disability issues, particularly in their faculties of social and political science. Education for PWD is a question of basic rights and requires serious attention. Without having a good quality of education, PWD cannot get the most of the available opportunities. Supporting all children with disability to go to school is the only option. Awareness-raising programs on disability issues, the training of teachers and teachers’ aides in the education of children with special needs, and the development of a curriculum that accommodates children with special needs must continue. On the other hand, people with physical disability also have their rights to go to the normal school. Consequently, there should be accessibility for them. Disability is caused by many factors including congenital causes, diseases and infections, and injuries and accidents. Some of these can be prevented. Organizational, professional, and sectoral capacity building to prevent and mitigate disability should be considered and planned for the future. Indonesia should cooperate with international partners to strengthen human resources and technical and managerial expertise in a rightsbased approach to manage disability.

REFERENCES 1. Irwanto I, Kasim ER, Fransiska A, et al: The Situation of People with Disability in Indonesia: A Desk Review. Centre for Disability Studies, Faculty of Social and Political Science Universitas Indonesia, 2010 2. The Indonesian Ministry of Health: Medical Rehabilitation Services in Type A, B, C Hospital, 2007

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The problems of people with disability in Indonesia and what is being learned from the World Report on Disability.

Recent epidemiologic findings indicate that 1.8% of the Indonesian population "have extreme problems" and 19.5% "have problems" in various aspects of ...
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