The World Health Organization's Atlas-ID Report: Evidence for Nurses on Global Disparities in Health Care for Persons with Intellectual Disabilities

J. Carolyn Graff, PhD, RN, FAAIDD, Heather Hall, MSN, RN, and Stella Nwokeji, MSN, RN

Abstract

Nurse practitioners, educators, researchers, and policy makers make extremely important contributions to the health and health care of persons with intellectual disabilities and their families. Nurses advocate at local, national, and international levels for needed improvements in services and supports that promote health and prevent illness in persons with intellectual disabilities. In this article, the authors present an overview of the World Health Organization's Atlas-ID, the first global report directed toward improving evidence-based knowledge about services and resources for persons with intellectual disabilities. The authors examined this report and present the findings on serious disparities in the areas of health services for persons with intellectual disabilities; services for their families; access to intellectual disabilities services; education of nurses about intellectual disabilities; and organizational support for health care. The Atlas-ID confirms the contributions made by nurses in the provision of health services to persons with intellectual disabilities worldwide. Although nurses have established themselves in significant positions in the areas of practice, education, research, and policy, nurses and all health professionals worldwide must undertake efforts to address these significant and serious disparities.

Keywords: developmental disabilities , intellectual disabilities , global health disparities , global resources

INTRODUCTION

Health care is frequently on the agenda of citizen activists, politicians, and researchers worldwide and rightly demands a more prominent position on the agenda of many others, such as business leaders, economists, educators, and policy makers. With budget constraints have come closer examinations of funds that are available for all health care, including the health care for persons with intellectual disabilities. In an effort to improve the knowledge and awareness of global and regional disparities, the World Health Organization (WHO) and the Montreal Pan American Health Organization/World Health Organization (PAHO/WHO) Collaborating Centre for Research and Training in Mental Health gathered information about resources and services for persons with intellectual disabilities from countries worldwide. Findings from their collaborative efforts have been presented in the report, Atlas: Global Resources for Persons with Intellectual Disabilities (Atlas-ID) (1).

Following a careful review and examination of the Atlas-ID, the authors of this article present information from the report that will be relevant to nursing and propose actions that can be taken by nurse practitioners, educators, researchers, and policy makers to further explore and address these serious health care disparities for persons with intellectual disabilities. The authors provide an overview of Atlas-ID and discuss issues related to health services for children, adolescents, and adults with intellectual disabilities; services for families; access to services; training, education, standards of care; and organizational support of health care.

The impetus for Atlas-ID included an awareness of the disregard for data collection in the field of intellectual disabilities, the emergence of disabilities as a human rights issue, and the establishment of a connection between the intellectual disabilities field and WHO (1). Wide global variation exists in awareness and understanding of intellectual disabilities and the services, including health services, available to persons with intellectual disabilities and their families. Determination of the numbers of persons with intellectual disabilities worldwide is challenging and seemingly impossible. The lack of common and consistently used terminology, limited resources and structures to identify persons with disabilities, and stigma attached to disabilities and their families contribute to our inaccurate and incomplete information.

According to Durkin (2), "Although more than 90% of children and families affected by developmental disabilities are likely to live in developing countries, it appears that more than 90% of research, preventive efforts and services related to developmental disabilities is directed toward the populations of the world's wealthier countries" (p. 210). The Atlas-ID report supports this assertion and further showed that the number, type, and comprehensiveness of available resources increased according to income. Services to persons with intellectual disabilities in high-income countries were more likely to be community-based and specific to intellectual disabilities while unmet needs were identified in low-income countries across a range of services. More than half of the reporting countries indicated that nurses provide services to persons with intellectual disabilities, yet fewer than half of the countries reported that nurses receive education and training specific to intellectual disabilities. Standards of care and practice for professionals working in the field of intellectual disabilities in government and private organizations were present in slightly more than half of the reporting countries.

The Atlas-ID Report can contribute to the field of intellectual disabilities in three ways. First, the Atlas-ID report identified gaps and needs in resources and services for persons with intellectual disabilities and their families worldwide. Second, the Atlas-ID Questionnaire and a glossary of terms can be used by countries or regions to plan for services. Third, a network of individuals in the field of intellectual disabilities has been formed from countries worldwide. These efforts will hopefully empower persons with intellectual disabilities and their families by increasing awareness of needed policies and programs to decrease service and resource disparities (1).

OVERVIEW OF THE ATLAS-ID

The primary purpose of the Atlas-ID (1) was to "improve evidence-based knowledge and awareness on the global and regional disparities through essential and needed information, and resources and services for persons with ID (intellectual disabilities) at country level" (p. 9). Information was collected on health services; policies and legislation; financing of services; government benefits; education; and occupation, vocational, and work-related services for persons with intellectual disabilities; services to families; factors impacting access to services; prevention; human resources and training; and the role of nongovernmental and international organizations. This descriptive cross-sectional survey used the Atlas-ID Questionnaire, which can be found in Appendix 3 of the Atlas-ID report and accessed at http://whqlibdoc.who.int/publications/2007/9789241563505_eng.pdf. The Atlas-ID Questionnaire is a revised version of a questionnaire that was originally developed by the International Association for Scientific Studies in Intellectual Disabilities (IASSID). Subsequent revisions of the IASSID questionnaire resulted in the Atlas-ID Questionnaire and an accompanying glossary of terms (1).

The Atlas-ID Questionnaire was distributed electronically to specialists in the intellectual disabilities field in countries in all six WHO regions. The WHO regions include Africa, the Americas (North and South America), South-East Asia, Europe, the Eastern Mediterranean, and the Western Pacific (a map of the WHO regions can be viewed at www.who.int/about/regions/en/). These specialists represented entities involved with persons with intellectual disabilities such as the government or ministry, a public organization that served as an advisory board to the government, a national nongovernmental organization, and a university or research institution. In addition, respondents were encouraged to collaborate with others in their country to obtain the most accurate information possible. More than two thirds of the questionnaires were completed or approved by a member of the government or ministry, 24% were returned by a nongovernmental organization, and 18% were returned from universities or research institutes. In some instances, more than one questionnaire was returned from a country. When this occurred, the highest priority was given to government representatives. A total of 147 questionnaires were returned and represent 75% of the world's countries and 95% of the world's population. Lowest response rates were in South-East Asia and the Eastern Mediterranean, and the highest response rate was in Europe (1).

Data were analyzed according to the six WHO regions using SPSS and by consolidated cross tabulations based on income categories established by the World Bank. The income categories established by the World Bank were based on the 2003 gross national income per capita and include low-income ($765 per year or less), lower-middle income ($766-3,035), upper middle income ($3,036-9,385), and high income ($9,386 or more) (1). Tables 1 through 6 display countries, areas, and territories that participated in the Atlas-ID project by WHO region and income category.

Respondents to the Atlas-ID Questionnaire identified eight terms that were most often used to refer to intellectual disabilities. All terms were similar from the perspective that they included "significant limitations in intellectual functioning, significant limitations in adaptive behaviour, and manifestations of these symptoms before adulthood" (p. 17). The most commonly used term, mental retardation, was used by 111 or 75% of the countries. Other frequently used terms included intellectual disabilities (57%), mental handicap (40%), and mental disabilities (39%). Evidence for promoting the use of the term "intellectual disabilities" was found in the Atlas-ID report on public awareness campaigns. For example, a South African public awareness campaign used the slogan "Upholding the human rights of persons with intellectual disabilities" (p. 31). A public awareness campaign in Zimbabwe used the slogan "No discrimination for intellectual disabilities" (p. 31).

ATLAS-ID: HEALTH SERVICES FOR CHILDREN, ADOLESCENTS, AND ADULTS

The Atlas-ID provided information on four types of health services available to children, adolescents, and adults with intellectual disabilities in 75% of countries. These included inpatient health services, primary health care, specialized health services, and physical rehabilitation (1). Inpatient health services included those services that were provided to a person with an intellectual disability in a setting, such as a hospital, in which the person resided for a period of time. Primary health care services included the "first level of care and the initial point of contact that a patient has with the health system" (p. 101). These services usually started with the community health nurse or family physician who emphasized health promotion and disease prevention. They served as a link to hospitals or other more specialized care. Specialized health services were defined as "services such as angioplasty procedures, dialysis, surgery, trauma services, mental health, cancer treatment, dental care, and speech therapy (etc.)" (p. 102). Physical rehabilitation services included services aimed toward improving "the independence and quality of life of the person with intellectual disabilities through physical therapy" (p. 101). Some persons with intellectual disabilities have associated developmental disabilities, such as cerebral palsy, which can require physical therapy, speech-language therapy, and educational/vocational/occupational intervention to assist with maximizing their abilities (3).

The four types of health services mentioned above were available to children and adolescents in all countries, with inpatient health services (71%) being the least available and primary health care services (88%) being the most available (Table 7). According to the Atlas-ID, the percentages of countries that reported having health services available to children and adolescents were lowest in the Western Pacific and highest in Europe. Slightly more than half of the countries in the Western Pacific and Africa reported having inpatient health services available to children and adolescents with intellectual disabilities compared to 87% of countries in Europe. Physical rehabilitation services for children and adolescents with intellectual disabilities were available in 80% or more of countries in all regions except the Western Pacific. The availability of primary health care services ranged from 76% of the countries in Africa to 100% of the countries in South-East Asia. (Only five of the 11 South-East Asian countries responded to the Atlas-ID Questionnaire). Specialized health services for children and adolescents were available in 63% of the countries in the Western Pacific and more than 90% of countries in Europe.

Countries with higher per capita incomes had more services available to children and adolescents than countries with lower per capita incomes (Table 7). This relationship between per capita income and available services may also be related to societal awareness of intellectual disabilities, the priority placed by a country's government and society on persons with intellectual disabilities, and the lack of agency or governmental accountability to develop and support national policies on intellectual disabilities. A country's health services infrastructure, including hospitals, clinics, rehabilitation services; the expertise and number of health professionals; the economic health of a country; and the systems for funding and delivering health services will influence the amount, type, and quality of health care services available to persons with intellectual disabilities.

Although there was less variability in the health services available for adults with intellectual disabilities (Table 8) when compared to children (Table 7), there appear to be fewer health services for adults (1). The exception was inpatient health services, which were available for children in 71% of countries and for adults in 75% of countries. Overall, the percentage of countries having health services available to adults with intellectual disabilities was lowest in South-East Asia, Africa, and the Western Pacific and highest in Europe. The percentage of countries having physical rehabilitation services available to adults was lowest in the Western Pacific and Africa and highest in Europe and the Eastern Mediterranean. Primary health care services available to adults were highest in the Americas and lowest in Africa. Specialized health services were most available to adults with intellectual disabilities living in Europe and least available to adults living in South-East Asia. Similar to findings about health services for children and adolescents, countries with higher incomes had more available services for adults with intellectual disabilities than countries with lower incomes (1). Factors that contribute to the availability of health services for adults with intellectual disabilities are likely similar to those factors affecting health services availability for children and adolescents with intellectual disabilities.

The relationship between high per capita income and more available services does not hold up in all findings. For example, lower-middle income countries had the highest percentage of physical rehabilitation services for children and adolescents (Table 7). The format of the Atlas-ID Questionnaire required respondents to give a "yes" or "no" response regarding the availability of physical rehabilitation services for children and adolescents with disabilities. These two options limited the information respondents could provide about services. For example, a respondent could answer "yes" when a single occurrence of physical rehabilitation service took place. This type of data does not provide a complete and accurate understanding of the frequency, amount, and kind of rehabilitation services available to persons with disabilities. The Atlas-ID authors recommend using caution when interpreting the results of this report. The authors described their challenges in identifying individuals who could provide reliable information. The authors noted that most respondents answered the questionnaire based on their personal knowledge and experience rather than using an official, comprehensive database as the source of their data.

A second instance in which the positive relationship between per capita income and available services does not hold up is seen in Table 8. A higher percentage of upper-middle income countries (86%) reported having inpatient health services for adults with ID than the high-income countries (83%). This difference may be related to the limited "yes" or "no" response options or may reflect upper-middle income countries' greater reliance on inpatient health services because of markedly differing health service delivery systems and poorer health of adults with intellectual disabilities. Another instance in which the positive relationship between per capita income and available services does not hold up can be seen as a higher percentage of upper-middle income countries reported having primary care services available to adults with disabilities compared to high-income countries. This may reflect greater availability of community health nurses and family physicians in upper-middle income countries compared to high-income countries. Interestingly, high-income countries (86%) reported having more available specialized health services compared to upper-middle income countries (71%). This availability of specialized health services in high-income countries may be related not only to a greater availability of specialists but also to the structure of the health service delivery system.

ATLAS-ID: SERVICES FOR FAMILIES OF PERSONS WITH INTELLECTUAL DISABILITIES

Family members frequently provide life-long care and support to persons with intellectual disabilities who live with their families, in their own homes, and in residential settings. The Atlas-ID Questionnaire focused on services available to families that included rights and advocacy support, education about the intellectual disabilities, home aid services, psychological support or counseling, and respite care (Table 9). The percentage of countries with services for families was lowest in the African region and highest in Europe. The availability of services for families was greater in countries with high income and decreased as income decreased. Home aid and respite care, which provided relief to family members who care for persons with an intellectual disability, were most available in high-income countries. For example, in the high-income category, 86% of the countries had home aid services and 74% of the countries had respite care available to families. In contrast, home aid services were available in 28% of the low-income countries and respite care was available in only 9% of these countries. Worldwide, the most available services to families were psychological support and counseling, followed by education about the intellectual disabilities, advocacy and support for rights, home aid services, and respite care (1).

The greater availability of services for families of persons with intellectual disabilities in high-income countries (Table 9) can be due to the questionnaire format (i.e., "yes" and "no" response option), the respondents' lack of knowledge and familiarity with the services available to families, a lack of data about services available to families, and the actual absence of services for families of persons with intellectual disabilities. The absence of or limited formal services to families of persons with intellectual disabilities may be replaced by informal services that are provided by neighbors, friends, and informal support networks that are unknown to those officials responding to the Atlas-ID Questionnaire.

ATLAS-ID: ACCESS TO INTELLECTUAL DISABILITIES SERVICES

According to the Atlas-ID, the factors having the greatest impact on timely access to services related to intellectual disabilities were ethnicity, geographical location (i.e., territory), religion, socioeconomic status, and urban versus rural for all WHO regions (Table 10). These five factors appeared to have the greatest impact on access to services for countries in the Americas and the least impact on countries in Europe. Urban versus rural location was reported to be a factor that impacted access to services in more than half of the countries in the Americas, Africa, Eastern Mediterranean, and South-East Asia. Urban versus rural location influenced access to services in 32% of the high-income countries and in 65% of the low-income countries. Socioeconomic status and geographical location were the main barriers to service access in more than half the countries responding to the questionnaire (1).

The difference in access to services for countries in the Americas in contrast to those countries in Europe will be considered from several perspectives. First, socioeconomic status had an impact on service access in 20% of the countries in Europe and 79% of the countries in the Americas. When examining the income categories of countries in Europe, 68% of countries in Europe were in the high- and upper-middle income categories compared to 48% of countries in the Americas. More specifically, 47% of the countries in Europe were in the high-income category compared to 8% of countries in the Americas. Ethnicity was reported to be the greatest barrier to access in the Americas according to 25% of the reporting countries. Other factors that were reported to influence access to intellectual disabilities services in a timely manner were literacy, ignorance of the existence of services, language ability, gender, education of the parents, level of mobility of the person with an intellectual disability, level of disability, and the age of the person or his/her caregiver (1). Although not discussed in the Atlas-ID report, the availability of and reliance on public transport or public transportation systems in Europe may have contributed to location having a lesser influence on access to intellectual disabilities services in Europe.

ATLAS-ID: IN-SERVICE TRAINING, EDUCATION, AND STANDARDS OF CARE FOR NURSES

The Atlas-ID revealed that nurses were involved in providing services to persons with intellectual disabilities in 68% of countries worldwide. Other professionals who were closely involved in providing services were special educators (86%), social workers (80%), psychiatrists (78%), teachers (77%), psychologists (75%), pediatricians (71%), physicians (66%), speech and language therapists (62%), occupational therapists (59%), physiotherapists (57%), primary health care workers (50%), and art/music therapists (40%). The percentage of countries reporting involvement by these other professionals is reported in parenthesis following each professional category.

Respondents were asked if nurses had the opportunity for in-service training related to supporting persons with intellectual disabilities and whether modules on intellectual disabilities were included in undergraduate and graduate curricula. Findings showed that in-service training was available for nurses in 44% (n = 64) of the countries with little variation across the WHO regions (Table 11). Training modules on intellectual disabilities were present in undergraduate curriculum in 40% of the reporting countries. Incorporation of training modules in undergraduate nursing curriculum was highest in South-East Asia and lowest in Africa, the Americas, Europe, and the Western Pacific. The percentage of countries reporting integration of training modules on intellectual disabilities into graduate nursing curriculum was highest in South-East Asia and lowest in Europe. The high percentage of South-East Asian countries reporting integration of content on intellectual disabilities into their undergraduate and graduate curricula may be related to the small number of countries (n = 5) that responded to the Atlas-ID Questionnaire. As noted previously, these five countries represent 42% of the potential 11 responses. Bangladesh and India fall into the low-income category and the remaining three countries (i.e., Indonesia, Sri Lanka, and Thailand) fall into the lower lower-middle income category. Also, nursing initiatives such as the WHO's Nursing and Midwifery Unit of South East Asia Regional Office (SEARO) have focused on strengthening the education and training of nurses and midwives in this region (4).

Of countries in the high-income category, 63% had in-service training on intellectual disabilities available to nurses compared to 30% of upper-middle income countries. When the incorporation of a training module on intellectual disabilities was examined by income categories for undergraduate and graduate curricula, smaller differences were seen (1). The activities of nursing professional organizations, continuing education requirements for re-licensure, and specialty certifications likely contribute to increased in-service training opportunities for professionals in high-income countries. The smaller variation in percentage (i.e., 30% in upper-middle income to 49% in high income) of countries reporting the presence of training modules on intellectual disabilities based on income categories may be due to the resistance or lack of priority placed on content related to intellectual disabilities in undergraduate and graduate nursing education programs in all countries.

Respondents were asked about standards of care and practice for persons with intellectual disabilities. Standards of care and practice for professionals employed by private organizations were reported to exist in 57% of countries, and standards for professionals employed by government organizations were present in 53% of countries. The presence of standards of care for professionals working in private organizations was highest in Africa and Europe (65%) and lowest in South-East Asia and the Western Pacific (40%). In government organizations, the presence of standards of care for professionals working was highest in Europe (77%) and lowest in the Americas and Western Pacific (36%). Standards of care and practice were maintained by in-service training, use of clinical practice guidelines, professional certification and maintenance of competency, and clinical supervision of workers (1).

In examining the differences in the presence of standards of care and practice for professionals by WHO region, it is important to point out that these data represent all professionals involved in providing services to persons with intellectual disabilities. Nurses are one category of 13 professional groups that were identified as providing services. From a nursing perspective, the differences in the presence of standards of care and practice in private and government organizations could be viewed as resulting from the country's health care infrastructure and each profession's expectations for, development, and implementation of standards of care and practice. Nursing practice, and to some extent nursing standards, will be affected by the system of health service delivery (i.e., socialized health care or health insurance market-based health care).

ATLAS-ID: ORGANIZATIONS' SUPPORT OF HEALTH

Nongovernmental organizations (NGOs) and international organizations contribute to the health of persons with intellectual disabilities and their families. NGOs are voluntary organizations, charitable groups, advocacy groups, and professional organizations. International organizations include international agencies such as the WHO and national organizations that are federations or associations. NGOs that are active in the field of intellectual disabilities are present in over 88% of the world's countries while international organizations are present in over 62% of the countries (1).

NGOs' activities relevant to families, health, prevention, and professional development are shown in Table 12. Activities related to families were present in 70% of the countries and activities related to health were present in 60% of the countries. More than half of all countries reported NGO activities related to professional development or education to assist professionals working in the field develop certain skills that would help them get or keep a job. The WHO region with the highest percentage of NGO activities related to families was the Americas while the Eastern Mediterranean reported the lowest such activities. The region with the highest percentage of NGO activities related to health was the Eastern Mediterranean; South-East Asia reported the lowest percentage of countries with NGO health-related activities. In terms of income, NGO activities related to the family, health, and prevention were relatively similar across all four income categories. High-income countries had a higher percentage of activities related to professional development than the other three income categories.

International organizations had greater involvement in professional development than family, health, and prevention (Table 13). An overall higher percentage of countries in the Eastern Mediterranean reported the presence of international organizations with activities focusing on family, health, and prevention while Europe had the overall lowest percentage of countries with international organizations focusing on family, health, and prevention. Differences in the presence of international organizations in the Eastern Mediterranean and Europe are likely related to the income differences between these two regions (Tables 4 and 5). The percentages of low-income countries in the Eastern Mediterranean and European regions are 23% and 6%, respectively. Likewise, the percentages of high-income countries in the Eastern Mediterranean and European regions are 23% and 47%, respectively.

Countries in the high-income category had more international organization activities involving professional development and prevention of intellectual disabilities than the other income categories (1). Low-income countries reported international organization activities that were somewhat evenly dispersed across family, health, prevention, and professional development. The high-income countries' greater focus on professional development and prevention likely reflects stronger infrastructure for family and health services, which allows these countries to turn their attention to areas that will enhance and improve the quality of lives of persons with intellectual disabilities. As mentioned above, there is a fairly large proportion of Eastern Mediterranean countries that have low incomes when compared to Europe, which has a large proportion of countries with high incomes. Considering this finding from the perspective of prevention, international organizations' activities in low-income countries are likely focusing on primary prevention or preventing disease from occurring and secondary prevention or early detection and treatment of disease. High-income countries with a strong health care infrastructure can turn their attention to reducing the impact of disease and promoting quality of life through rehabilitation.

Although prevention was not specifically defined in the glossary of terms for the Atlas-ID Questionnaire, respondents were asked about the availability of preventive intellectual disabilities services in their country. Preventive intellectual disabilities services were defined in the Atlas-ID glossary as: "All organized activities in the community to prevent the occurrence as well as the evolution of intellectual disabilities, including the timely application of means to provide information and education on the known causes of intellectual disabilities, or etiology" (p. 101).

IMPLICATIONS FOR NURSES

Although several limitations of this study have been described above, the results of this survey have strong implications for nurse practitioners, educators, researchers, and policy makers. A major point that is critical to nurses in all countries relates to public awareness campaigns. Every person with intellectual disabilities should have access to health services. The gaps and disparities in health services for children, adolescents, and adults with intellectual disabilities by region and income category are evident. Nurses can and should be advocates for services offered to persons with intellectual disabilities. Although special educators, social workers, and other professionals may be responsible for providing many of the services to persons with intellectual disabilities, it is often nurses who initiate the process of referring persons to needed health services, education programs, and social services.

Nurses perform services such as screening, assessment, and orientation; early intervention; individual support and case management; psychological and psychiatric interventions; psychosocial rehabilitation; and day activities that are described in the Atlas-ID report (1). Prevention of intellectual disabilities is an important responsibility of nurses who, as providers, see persons with intellectual disabilities on a daily basis. Nurses should be aware of factors (e.g., alcohol and drug abuse during pregnancy, lead exposure, newborn screening for PKU and other disorders) that cause intellectual disabilities and learn to implement strategies to prevent intellectual disabilities when this is feasible. Nurses should monitor the development of children during their well-child visits, educate parents about child health and development, and encourage immunizations. Nurses strive to provide culturally competent and family-centered care to persons with intellectual disabilities (5)(6)(7)(8)(9). Including nurses on teams of professionals providing services to persons with intellectual disabilities will bring a richer, more complete multidisciplinary approach to care for persons with intellectual disabilities and their families.

Nurses educate other nurses through in-service training and formal education programs. Nurses provide care to persons with intellectual disabilities in almost 70% of all countries, yet 56% of all countries reported they do not provide in-service training to nurses. The gap between the countries in which nurses provide care to persons with intellectual disabilities and countries that provide in-service training about intellectual disabilities must be addressed. In-service training and ongoing education are critical for nurses to keep current on health services and interventions for persons with intellectual disabilities. This training helps ensure that the quality of care and quality of life for persons with intellectual disabilities is improved and maintained over time. Integration of content on intellectual disabilities into undergraduate and graduate programs for nurses is critically needed (10). Less than 50% of all countries reported that undergraduate programs for nurses incorporated training modules on intellectual disabilities in their program curricula. And, only one fourth of countries reported that training modules on intellectual disabilities were incorporated into the curriculum of graduate programs for nurses. Although standards of care and practice were maintained through in-service training in almost 70% of countries, the report provided no information on nursing standards of care and practice in these countries.

Adding content to the curriculum of nursing education programs can meet resistance in this information explosion and nursing shortage era. Nursing education programs are being challenged to produce more nurses who are highly skilled and will remain in the work force. The addition of content related to intellectual disabilities will require a champion on the nursing education curriculum committee to assure the value of this content is made known to other nurses and integrated into curricula. In other words, the priority nurse educators placed on content related to intellectual disabilities has a greater influence on its integration into undergraduate and graduate nursing program curricula than the income level of a country.

Standards of practice have been developed by U.S. nursing organizations and include "Intellectual and Developmental Disabilities Nursing: Scope and Standards of Practice" (11) and the "Standards of Developmental Disabilities Nursing Practice" (12). The first document is a publication of the American Nurses Association and was developed in collaboration with the American Association on Intellectual and Developmental Disabilities, Nursing Division. The second document was developed by the Standards of Nursing Practice Committee of the Developmental Disabilities Nurses Association. A third document with relevance to nurses working with persons with intellectual disabilities is "Genetics/Genomics Nursing: Scope and Standards of Practice," which was developed by the International Society of Nurses in Genetics Scope and Standards Workgroup in collaboration with the American Nurses Association (13).

Further research is urgently needed to explore the availability of services for persons with intellectual disabilities and their families and to confirm or refute the findings reported in the Atlas-ID. That one fourth of all countries have no available inpatient health and specialized health services available for children, adolescents, and adults with intellectual disabilities is troubling. Also of concern is the finding that more than 10% of countries reported having no primary health care available for persons with intellectual disabilities. This translates into the likelihood that an unknown and large number of persons with intellectual disabilities are living without basic health services. Physical rehabilitation services for persons with intellectual disabilities may be more available because physical disabilities are easily recognized and may be more easily managed than invisible disabilities such as intellectual disabilities without accompanying physical disabilities. These differences in available health services could be examined by the nursing profession represented in the WHO regions and countries.

Immediate attention should be given to examining the services available for families of persons with intellectual disabilities. The findings that 39 of the 147 countries (26%) provide no psychological support to families, 63 of these countries (43%) provide families with no support for rights and advocacy, and 49 of these countries (33%) do not provide families with education about intellectual disabilities demand our attention. The results showing that a large majority of countries do not provide respite care and home aids may be related to culture, economics, and other factors that should be examined along with the impact of the unavailability of these services on families and persons with intellectual disabilities. Factors such as urban versus rural location, geographic location, and socioeconomic status that reportedly determine access to intellectual disabilities services should be explored as should the ability of NGOs and international organizations to address these factors.

Research should focus on strategies for integrating content on intellectual disabilities into in-service training and formal education for nurses and into undergraduate and graduate education programs. The impact of this education on nurses and, more importantly, on persons with intellectual disabilities and their families should be measured and modified on an ongoing basis. While nursing education can address broad issues related to health of persons with disabilities across regions, countries, and territories, nurses need support and guidance as they tailor their knowledge and skills to practice in their unique settings. Identifying components of nursing that are broad and relevant across multiple settings and strategies that will assist nurses with adapting existing knowledge and science to local areas are needed.

Krahn, Hammond, and Turner (14) described challenges to providing health care to persons with intellectual disabilities through a conceptual framework that includes factors that contribute to health and health disparities for persons with intellectual disabilities. This framework separates disabilities from health and differentiates among three types of health conditions (i.e., associated health conditions, comorbid conditions, and secondary conditions) that can contribute to health disparities. Associated health conditions include medical conditions such as Down syndrome or cerebral palsy that have resulted in the intellectual disabilities. Comorbid conditions are diseases such as hypertension that have adverse effects on a person's health but are neither caused by nor occurring from the intellectual disabilities. Secondary conditions are those conditions such as constipation or depression that occur with increased frequency for persons with intellectual disabilities but are usually preventable. The framework also includes determinants of health which are genetic, social circumstances, environment, individual behavior/health promotion, and health care access. Separating the determinants of health from disabilities can help nurses differentiate among the categories of health conditions and identify factors that contribute to health disparities in persons with intellectual disabilities.

Building on this framework and findings from their review of the literature, Krahn et al. (14) described a cascade of disparities that adversely affect the health status of persons with intellectual disabilities. First, the effects of different prevalence rates of adverse health conditions and behavior disorders are increased by the disparities in attention to care needs. Next, the health of persons with intellectual disabilities is further impacted by disparities in preventive care and health promotion practices. Last, inequitable access to health care impacts health. Krahn et al. assert that "it is the culminating effect of this cascade of disparities that results in the poor health status of persons with ID (intellectual disabilities)" (p. 72). Persons with intellectual disabilities have higher prevalence of associated health conditions, inadequate attention from caregivers to their needs, inadequate focus on health promotion, and inadequate access to quality health services. Krahn et al. point out that recognition of the complexity of issues contributing to health disparities of persons with intellectual disabilities is crucial. Strategies to address health disparities for persons with intellectual disabilities and their access to health care have been reported by others (15)(16)(17)(18)(19). Efforts must focus on the persons with intellectual disabilities, their health providers, and the policies that result in changes in programs and systems.

Nurses have a responsibility to shape policy and collaborate with others to promote international efforts to meet health needs (20). As nursing increases awareness of gaps and disparities, nurses should advocate in local, national, regional, and international venues for improved health services for persons with intellectual disabilities, improved services to families, access to intellectual disabilities services, and improved and expanded nursing education about intellectual disabilities. Advocacy can occur through individual or collective efforts in organizations such as the Developmental Disabilities Nurses Association (DDNA) (21), the International Association for the Scientific Study of Intellectual Disabilities (IASSID) (22), and the American Association on Intellectual and Developmental Disabilities (AAIDD) (23). Along with being a strong advocate, nurses can influence and initiate policy changes to address the disparities in health care. Becoming a successful policy advocate requires knowledge and skills that many nurses may not possess or be hesitant to use. Publications such as the article by Abood (24), a recent publication by the American Nurses Association's Associate Director for Government Affairs, discussed strategies for effectively influencing health policy. The International Council of Nurses' (ICN) representation of nurses from more than 128 countries is consistent with ICN goals: "To bring nursing together worldwide, to advance nurses and nursing worldwide, and to influence health policy" (25).

According to the WHO Office of Nursing and Midwifery, nurses and midwives are the largest category of health workers and provide up to 80% of direct patient care (26). Strengthening of nursing and midwifery has been identified as a priority of the World Health Assembly, with attention given to recruitment and retention of nurses and midwives and active involvement of nurses and midwives in developing health systems and framing health policy (27). The WHO Office of Nursing and Midwifery's mandate is to strengthen nursing and midwifery by responding to country efforts and "providing policy and technical; facilitating capacity-building and collaborative partnerships; and supporting the enhancement of evidence generation for decision-making" (26). Although many nurses have established themselves in significant positions in the areas of practice, education, research, and policy, nurses and all health professionals worldwide must undertake efforts to address significant disparities in health services and resources available to persons with intellectual disabilities and their families. The WHO Office of Nursing and Midwifery's mandate to strengthen nursing and midwifery is an ideal opportunity to increase educational opportunities, improve practice, conduct research, and establish policies to improve health care for persons with intellectual disabilities while supporting diverse approaches and respecting cultural uniqueness and difference.

CONCLUSIONS

The Atlas-ID report is the result of a very important collaborative effort by the WHO and PAHO/WHO to examine and identify gaps in services and resources for persons with intellectual disabilities (1). This report can serve as the beginning of intensive and ongoing efforts to address the health of persons with intellectual disabilities. The strengths of the Atlas-ID study include the large sample size, the Atlas-ID Questionnaire that was developed in consultation with experts from around the world, a glossary to clarify terms used in the questionnaire, and careful attention to verifying and coding the data.

The authors of the Atlas-ID identified several limitations of the Atlas-ID Questionnaire. The data collection tool and process need to be refined. The lack of common terminology related to intellectual disabilities across all countries influenced the reliability of the findings. Although the glossary was an attempt to address misunderstanding and reduce error related to interpretation of the questions, it was impossible to assume that all respondents would understand one term in the same way. Another limitation was related to the agency reporting the data and the fact that several agencies and levels of government might be responsible for providing services in one country. The analysis of data according to WHO regions disguises the differences within a region. For example, the variation by country within a WHO region is large and represents heterogeneity in terms of culture, economics, and geography. The absence of reliable data on the international prevalence and incidence of intellectual disabilities, and concerns about incomplete data on resources and services for persons with intellectual disabilities, are major challenges. Support of existing programs and development of appropriate services and resources to address the health of persons with intellectual disabilities will be hindered by this lack of information. Additional limitations of this survey can be found in the Atlas-ID report (1).

Table 1. Income Category of Countries, Areas, or Territories in the Africa WHO Region Completing the Atlas-ID Questionnaire (N = 35)

Country, Area, or Territory	Low Income (n = 28)	Lower-Middle Income (n = 3)	Upper-Middle Income (n = 4)	High Income (n = 0)
Algeria		X
Angola		X
Benin	X
Botswana			X
Burundi	X
Cameroon	X
Chad	X
Comoros	X
Republic of Congo	X
Cote d'lvoire	X
Democratic Republic of Congo	X
Ethiopia	X
Gabon			X
Gambia	X
Ghana	X
Guinea	X
Kenya	X
Lesotho	X
Madagascar	X
Malawi	X
Mali	X
Mauritania	X
Mauritius			X
Mozambique	X
Namibia		X
Niger	X
Nigeria	X
Rwanda	X
Senegal	X
Sierra Leone	X
South Africa			X
Uganda	X
United Republic of Tanzania	X
Zambia	X
Zimbabwe	X

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 77-81).

Table 2. Income Category of Countries, Areas, or Territories in the Americas WHO Region Completing the Atlas-ID Questionnaire (N = 25)

Country, Area, or Territory	Low Income (n = 1)	Lower-Middle Income (n = 12)	Upper-Middle Income (n = 10)	High Income (n = 2)
Argentina			X
Barbados			X
Belize			X
Bolivia		X
Brazil		X
Canada				X
Chile			X
Colombia		X
Costa Rica			X
Cuba		X
Dominican Republic		X
El Salvador		X
Guatemala		X
Honduras		X
Jamaica		X
Mexico			X
Nicaragua	X
Panama			X
Paraguay		X
Peru		X
Saint Lucia			X
Suriname		X
Trinidad and Tobago			X
United States of America				X
Uruguay			X

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 77-81).

Table 3. Income Category of Countries, Areas, or Territories in the South-East Asia WHO Region Completing the Atlas-ID Questionnaire (N = 5)

Country, Area, or Territory	Low Income (n = 2)	Lower-Middle Income (n = 3)	Upper-Middle Income (n = 0)	High Income (n = 0)
Bangladesh	X
India	X
Indonesia		X
Sri Lanka		X
Thailand		X

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 77-81).

Table 4. Income Category of Countries, Areas, or Territories in the Europe WHO Region Completing the Atlas-ID Questionnaire (N = 47)

Country, Area, or Territory	Low Income (n = 3)	Lower-Middle Income (n = 12)	Upper-Middle Income (n = 10)	High Income (n = 22)
Albania		X
Armenia		X
Austria				X
Belarus		X
Belgium				X
Bosnia and Herzegovina		X
Bulgaria		X
Croatia			X
Cyprus				X
Czech Republic			X
Denmark				X
Estonia			X
Finland				X
France				X
Georgia		X
Germany				X
Greece				X
Hungary			X
Iceland				X
Ireland				X
Israel				X
Italy				X
Kazakhstan		X
Kyrgyzstan	X
Latvia			X
Lithuania			X
Luxembourg				X
Malta				X
Montenegro		X
Netherlands				X
Norway				X
Poland			X
Portugal				X
Republic of Moldova	X
Romania		X
Russian Federation			X
Serbia		X
Slovakia			X
Slovenia				X
Spain				X
Sweden				X
Switzerland				X
Former Yugoslav Republic of Macedonia		X
Turkey			X
Ukraine		X
United Kingdom of Great Britain and Northern Ireland				X
Uzbekistan	X

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 77-81).

Table 5. Income Category of Countries, Areas, or Territories in the Eastern Mediterranean WHO Region Completing the Atlas-ID Questionnaire (N = 13)

Country, Area, or Territory	Low Income (n = 3)	Lower-Middle Income (n = 6)	Upper-Middle Income (n = 1)	High Income (n = 3)
Afghanistan	X
Egypt		X
Iran		X
Iraq		X
Lebanon			X
Pakistan	X
Qatar				X
Saudi Arabia				X
Syrian Arab Republic		X
Tunisia		X
United Arab Emirates				X
West Bank and Gaza Strip		X
Yemen	X

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 77-81).

Table 6. Income Category of Countries, Areas, or Territories in the Western Pacific WHO Region Completing the Atlas-ID Questionnaire (N = 22)

Country, Area, or Territory	Low Income (n = 6)	Lower-Middle Income (n = 6)	Upper-Middle Income (n = 2)	High Income (n = 8)
Australia				X
Brunei Darussalsm				X
Cambodia	X
China		X
China–Hong Kong Special Administrative Region				X
Cook Islands		X
Japan				X
Lao People’s Democratic Republic	X
Malaysia			X
Mongolia	X
Myanmar	X
New Caledonia				X
New Zealand				X
Palau			X
Papua New Guinea	X
Philippines		X
Republic of Korea				X
Samoa		X
Singapore				X
Tokelau		X
Tonga		X
Viet Nam	X

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 77-81).

Table 7. Health Services Available for Children and Adolescents with Intellectual Disabilities by World, WHO Regions, and Income Categories

	Inpatient Health (n = 126)	Physical Rehabilitation (n = 132)	Primary Health Care (n = 132)	Specialized Health (n = 127)
World	71%	84%	88%	76%
WHO regions Africa Americas South-East Asia Europe Eastern Mediterranean Western Pacific	59% 73% 60% 87% 73% 58%	83% 91% 80% 88% 92% 65%	76% 87% 100% 95% 91% 85%	65% 73% 80% 91% 78% 63%
Income categories Low-income Lower-middle income Upper-middle income High income	57% 68% 83% 84%	74% 90% 87% 87%	75% 87% 96% 97%	64% 76% 75% 91%

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 41-42).

Table 8. Health Services Available for Adults with Intellectual Disabilities by World, WHO Regions, and Income Categories

	Inpatient Health (n = 120)	Physical Rehabilitation (n = 124)	Primary Health Care (n = 131)	Specialized Health (n = 127)
World	75%	77%	85%	73%
WHO regions Africa Americas South-East Asia Europe Eastern Mediterranean Western Pacific	63% 86% 40% 90% 70% 59%	64% 83% 80% 85% 85% 63%	70% 95% 80% 93% 80% 85%	61% 82% 50% 84% 80% 60%
Income categories Low-income Lower-middle income Upper-middle income High income	65% 71% 86% 83%	61% 75% 83% 91%	70% 89% 96% 91%	60% 76% 71% 86%

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (p. 42).

Table 9. Services Available to Families of Persons with Intellectual Disabilities by World, WHO Regions, and Income Categories (N = 147)

	Advocacy Support	Education about ID	Home Aid	Psychological Support	Respite Care
World	57%	67%	44%	73%	30%
WHO regions Africa Americas South-East Asia Europe Eastern Mediterranean Western Pacific	40% 56% 20% 72% 61% 59%	43% 68% 80% 81% 77% 64%	31% 28% 40% 62% 38% 50%	60% 72% 80% 87% 69% 68%	14% 12% 20% 55% 15% 32%
Income categories Low-income Lower-middle income Upper-middle income High income	31% 41% 48% 80%	46% 59% 74% 94%	28% 29% 41% 86%	60% 62% 81% 97%	9% 17% 26% 74%

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 48-49).

Table 10. Factors Impacting Access to Intellectual Disabilities Services by World, WHO Regions, and Income Categories

	Ethnicity (n = 140)	Geographical Location (n = 141)	Religion (n = 138)	Socioeconomic Status (n = 141)	Urban/Rural Location (n = 140)
World	14%	54%	6%	52%	56%
WHO regions Africa Americas South-East Asia Europe Eastern Mediterranean Western Pacific	23% 25% 0% 4% 8% 18%	64% 75% 80% 46% 46% 32%	10% 4% 0% 0% 8% 14%	78% 79% 80% 20% 54% 41%	66% 75% 60% 44% 61% 43%
Income categories Low-income Lower-middle income Upper-middle income High income	18% 12% 19% 9%	61% 70% 52% 29%	8% 5% 11% 0%	75% 67% 44% 14%	65% 68% 58% 32%

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 49-50).

Table 11. In-Service Training and Education Related to Intellectual Disabilities Available to Nurses by World, WHO Regions, and Income Categories (N = 146)

	Inservice Training	Undergraduate Education	Graduate Education
World	44%	40%	25%
WHO regions Africa Americas South-East Asia Europe Eastern Mediterranean Western Pacific	41% 44% 40% 49% 38% 41%	35% 36% 80% 36% 61% 36%	21% 20% 60% 17% 46% 32%
Income categories Low-income Lower-middle income Upper-middle income High income	45% 36% 30% 63%	38% 40% 30% 49%	26% 31% 18% 20%

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 57-59).

Table 12. Nongovernmental Organizations' (NGOs) Activities in the Field of Intellectual Disabilities by World, WHO Regions, and Income Categories (N = 126)

	Family	Health	Prevention	Professional Development
World	70%	60%	42%	51%
WHO regions Africa Americas South-East Asia Europe Eastern Mediterranean Western Pacific	60% 82% 80% 74% 54% 67%	60% 77% 40% 49% 82% 53%	43% 50% 20% 40% 54% 33%	43% 45% 60% 65% 54% 27%
Income categories Low-income Lower-middle income Upper-middle income High income	71% 67% 74% 70%	62% 69% 52% 51%	38% 39% 43% 48%	41% 41% 52% 70%

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 60-62).

Table 13. International Organizations’ Activities in the Field of Intellectual Disabilities by World, WHO Regions, and Income Categories (N = 93)

	Family	Health	Prevention	Professional Development
World	28%	34%	31%	42%
WHO regions Africa Americas South-East Asia Europe Eastern Mediterranean Western Pacific	32% 25% 25% 24% 33% 27%	32% 50% 25% 17% 75% 27%	36% 42% 25% 21% 50% 18%	40% 58% 50% 34% 33% 54%
Income categories Low-income Lower-middle income Upper-middle income High income	30% 28% 35% 18%	40% 28% 41% 29%	37% 24% 23% 41%	37% 45% 35% 53%

Note: From WHO (2007). Atlas: Global resources for persons with intellectual disabilities (Atlas-ID). Geneva, Switzerland: World Health Organization (pp. 60, 63-64).