An ethnographic study in Jamaica noted several childrearing practices that could have a negative effect on children with disabilities. Structure of Medical Services. Medically oriented paradigms, which have been followed thus far in undergraduate and postgraduate medical curricula in low-income countries to resolve all issues related to health, may be a key impediment to the provision of services for children with developmental disabilities in some countries.
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Most health programs are hierarchical, with the physician. This has been a barrier to the development of multidisciplinary teams in which each professional has a key role to play. In addition, negative attitudes and behavior on the part of health professionals have repeatedly been cited by those seeking care as barriers to their using services or seeking help in established centers. People want service from someone they can come to repeatedly, or the same person visiting their homes. In public health institutions, where personnel are often temporary, this is not possible.
Distance from services has been cited as a key deterrent to the use of services, as money and resources are required to travel and stay overnight in a large town or city. It is apparent from the multitude of highly prevalent diseases and common environmental factors that contribute to or increase the risks for developmental disabilities, that recognition of these disabilities must become a public health priority in developing countries. Inclusive educational policies at both the national and local levels should be implemented to ensure that all children, including those with disabilities, have access to appropriate schooling.
Resources must be provided in developing countries for special training and support of teachers in the recognition and teaching of children with developmental disabilities, including mental retardation and specific learning disabilities. Proven interventions detailed in the report for the prevention and treatment of causative factors for developmental disabilities should be implemented through community-based demonstration projects and subsequently adapted to meet the local needs of the communities they serve. Cost-effectiveness studies have been done for interventions in low-income countries that target some of the causes of developmental disabilities, interventions such as malaria prophylaxis, micronutrient supplementation and fortification, and immunization programs.
In general, when the full direct and indirect costs to individuals and society of disabilities arising early in life are considered, cost-effectiveness should be relatively easy to achieve for interventions that are effective in preventing developmental disabilities and improving children's functioning and self-sufficiency.
Yet specific evidence regarding the cost-effectiveness of preventing developmental disabilities in low-income countries is lacking. Measures of the costs and benefits of rehabilitation of developmental disabilities are particularly difficult to obtain. The cost-effectiveness of newborn screening in general is dependent on the frequency and severity of the conditions being screened for; the effectiveness of early newborn identification and treatment; and the availability of laboratory facilities for testing and confirmation, genetic counseling, treatment, and follow-up services.
Newborn screening requires a government commitment and regulation and should include all births unless clear risk categories can be identified and subpopulations targeted. Quality control to maintain high accuracy of screening and confirmatory test results is crucial. It is usually necessary for the laboratory infrastructure and procedures for newborn screening to be centralized. A regional center for medical genetics is necessary to provide the laboratory infrastructure for newborn screening, confirmation of diagnoses, counselling, treatment, and follow-up of cases.
A cost-effective strategy may be the regional development of networks of laboratories that complement each other and cover very large populations of one or more countries. The decision whether to develop a newborn screening program and for which conditions will vary from country to country. Conditions with high priority for newborn screening should be clinically severe and relatively frequent, capable of early detection and diagnosis with simple and low-cost methods, and amenable to treatment that will be most beneficial if initiated immediately after birth.
Training and expertise are needed at all levels of health care, as well as in the educational and research sectors, to address the issues and recommendations included in this chapter. Training in these areas not only produces specialists who can appropriately diagnose and treat developmental disabilities, but also provides the knowledge required to train health care personnel at all levels with the skills required for intervention.
These programs are needed to ensure the availability of adequate numbers of researchers to carry out policy, clinical, and basic research relevant to the prevention and rehabilitation of developmental disabilities in low-income countries. Areas of training for this research would include but not be limited to immunology; medical genetics; pathology; child psychology; psychiatry and neurology; neurosciences; nutrition; pediatrics; audiology; ophthalmology; epidemiology; biostatistics; and health services management, research, and policy. Such programs are necessary to produce cadres of rehabilitation workers, and to provide continuing education focused on CBR and other therapeutic interventions as well as on appropriate referrals for children with disabilities.
Certificate and degree programs should be designed that are relevant to local needs and cultural contexts. Programs that might be included are developmental psychology, audiology, speech and language therapy, orthopedics, prosthetics, occupational therapy, and physical therapy. These programs are needed to provide expertise in areas vital to the prevention of and additional research on developmental disabilities.
These programs should include pediatrics, pediatric neurology, neonatology, psychiatry, optometry, ophthalmology, obstetrics, midwifery, infectious disease control, diagnostic imaging, and nutrition. Such programs are required to train cadres of teachers working in low-income countries in the recognition and teaching of children with special educational needs due to low cognitive abilities; specific learning disabilities; and vision, hearing, and behavioral disorders.
These skills would require training in areas such as child development and special education.humefesi.tk
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However, the range of services that can be made available, the training of health care workers, and access to more complex diagnostic and therapeutic help when needed all improve significantly when the primary care system is linked integrally to a regional or national center see Chapter 3. Additionally, the research that is needed to further improve services often requires community participation.
While each country should develop a rehabilitation strategy suited to its own needs and development priorities, it is necessary to seek areas of conver-. An obvious field for cooperation is in capacity building, particularly in the areas of training, research, and infrastructural development. This cooperation might be facilitated on a regional level through the establishment of regional training and research centers.
These centers could provide training for rehabilitation staff, and assist regional governments in the development of rehabilitation programs by supporting operational research and funding infrastructure development. In the longer term, research efforts might focus on the development of strategies for prevention.
Training initiatives should be given priority to provide a foundation of skilled staff that can support the development of rehabilitation services. In establishing training courses, careful consideration should be given to the development of appropriate curricula. Consideration should also be given to reviewing the existing curricula of degree courses for therapists with a view to making them more relevant to local needs. The courses should be modified to provide broader training in rehabilitation and to include training in community development.
Box reviews some of the consequences of using a curriculum that has not been adapted to the context of developing countries.
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Finally, qualified therapists are often reluctant to leave urban areas to live and work in remote rural locations. They may opt instead to leave government employment and work in the private sector, where conditions and remuneration are usually superior. Professionals currently responsible for the delivery of rehabilitation services in the majority of African countries are graduates of Western universities or have graduated from local universities whose curricula have been adapted from Western models.
This has a number of consequences. First, Western curricula train therapists in only one aspect of rehabilitation, e. This restricts the usefulness of the curricula in the context of developing countries. Therapists are often overqualified for the tasks they are expected to perform, and the sophisticated equipment used in modern therapy is seldom available.
Moreover, it is necessary to employ three therapists at each site to provide comprehensive service, and this adds considerably to costs. Second, conventional training does not equip graduates with the skills needed to mobilize communities and develop sustainable community-based programs. Training programs should be established to develop expertise in low-income countries in areas vital to the prevention and treatment of developmental disabilities and to the provision of effective rehabilitation services as detailed in the above descriptions.
Currently, disability prevention and rehabilitation specialists and workers in developing countries are isolated, and could benefit from opportunities to interact and exchange information with colleagues in similar but geographically distant contexts. The Internet could offer a low-cost means of facilitating this communication, but support is needed for the development and maintenance of the necessary information systems and for the purchase of the hardware needed to connect sites throughout the world. The Internet could serve as a relatively low-cost means of linking rehabilitation programs at multiple sites throughout the world.
It could also provide information resources and continuing education, as well as opportunities for professional exchange and contact. Internet capabilities should be developed and maintained to facilitate international communication among those involved in the implementation of primary prevention and rehabilitation programs for children with developmental disabilities in low-income countries. Essential to the provision of adequate services for children and the prevention of developmental disabilities is a universal policy of adequate and sustained primary health care that will be health promotive, disease preventive, curative, and rehabilitative.
Exemplary programs include under-five clinics [ , and ] that provide immunization; nutrition and growth assessment; developmental, vision, and hearing screening; health education; and identification of risk factors for disabilities. Children are seen by primary health workers in these clinics regularly and frequently for monitoring and treatment.
The success of these clinics requires adequate supplies of essential medications. Findings and progress are recorded on a home-based child health record, with growth charts being kept by mothers.
Appropriate referrals are made for treatment and rehabilitation when indicated. This approach has been shown to be highly effective against child mortality and has also resulted in significantly accelerated motor development [ ]; however, research is needed regarding its effects on other developmental parameters.
Strengthening and further development of the infrastructure and capacity of maternal and child health services are needed to ensure that the prevention of developmental disabilities is integral to the goals and activities of these services. Specific activities to be incorporated include nutritional supplementation; food fortification; immunization; antiparasitic prophylaxis; educational and counseling programs relevant to the prevention of nutritional, infectious, environmental,. In addition, support is needed for locally relevant and appropriate rehabilitation programs, linked to primary health care, to which children with developmental disabilities and their caretakers can be referred to ensure that they achieve their potential in terms of function, independence, productivity and quality of life.
In the context of the successes of current primary health care child survival initiatives, it is essential in low-income countries that increased emphasis be placed on prevention and early identification of developmental disabilities within the primary and maternal and child health care systems. Those systems must in turn be linked to and supported by secondary and tertiary medical services.
Additionally, to provide appropriate guidance to those in need of rehabilitation services for developmental disabilities, primary and maternal and child health care systems should be linked to local rehabilitation programs. The capacity for relevant evidence-based research should be developed. As recommended earlier in this report, national centers for training and research based in low-income countries can play an essential role in establishing this capacity see Chapter 4.
The role of these centers should include conducting clinical and community trials through demonstration projects to test the effectiveness of interventions in the prevention of developmental disabilities as well as training personnel to implement prevention and intervention strategies. The capacity of these centers should be further advanced through collaboration and communication with other centers in both the developing world and in high-income countries.
Centers for Disease Control and Prevention, the U. Based on the findings of studies regarding the etiology, risk factors, and interventions for developmental disabilities presented earlier in this chapter, some specific areas of research for national centers for training and research might include the following:. The cost-effectiveness of prenatal and newborn screening in specific settings.
The reliability, validity, and feasibility of surveillance methods and information systems. Models for extending effective rehabilitation for children with developmental disabilities in low-income countries. Nervous system sequelae of cerebral malaria and their prevention. The cost-effectiveness of specific nutritional interventions for the prevention of developmental disabilities. These include interventions such as salt iodination; vitamin A, folate, and iron food fortification and supplementation; and education about local food sources.
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The etiology and prevention of adverse pregnancy outcomes, such as maternal morbidity and mortality, low birth weight, intrauterine growth restriction, and premature birth and birth defects with an emphasis not only on maternal and infant survival, but also on the prevention of developmental disabilities. The impact of maternal education, injury-prevention public awareness programs, and alleviation of poverty on the prevention of developmental disabilities. Methodological and prevalence studies to ensure that developmental disabilities are effectively represented by DALYs or other measures of impact so that the costs and effects of these disorders can be appropriately measured.
Epidemiological studies have provided some basic knowledge about developmental disabilities in low-income countries, including evidence of relatively high population frequencies, the contribution of various causes, and prospects for prevention. While the data are, on the whole, extremely limited, the prevalence of many of the specific causes of developmental disabilities including genetic, nutritional, infectious, and traumatic causes appears to be elevated in.
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Educational and rehabilitation interventions can help minimize disability and maximize the function of children with developmental disabilities. Nonetheless, few resources are devoted to relevant programs for children with developmental disabilities in low-income countries. The number of children with disabilities and at risk for developmental disabilities in low income countries is huge, as are the impacts of disability on national economies and quality of life. Yet the capacity for prevention, treatment, and rehabilitation is insufficient.
The need to reduce the prevalence of developmental disabilities in the developing world is urgent and calls for innovative and sustained public health efforts and financial commitments. ICDInternational statistical classification of diseases and related health problems.