Disability and its prevention in Indian populations: is it someone else's responsibility?

Disability and its Prevention in Indian Populations: is it someone else's responsibility?

Despite a well coordinated and eminently successful federal, state and Indian tribal effort aimed at combatting health problems in American Indians and Native Alaskans (Indians), prevention and amelioration of disabilities in these populations continue to pose questions regarding provider responsibility and service coordination. Obscure jurisdictional boundaries and absence of service coordination among responsible agencies constitute one of the major factors impeding the development of viable habilitation and rehabilitation programs in the majority of reservation and urban Indian communities. In the light of the high prevalence of chronic illness and disability in these populations, it may be assumed that the disabled Indian today is not receiving an equitable share of the benefits that are available to disabled citizens.

Among federal agencies, the Indian Health Service (IHS) plays a central role in meeting the health needs of Indians. The agency's role in disability (or its correlate, chronic illness), however, has been at issue for at least a decade. Although its legislative mandate addresses comprehensive health and rehabilitation needs of Indians, its role in these areas has been blurred not only by a public health delivery model, but by new laws affecting disabled U.S. citizens and by responsibilities ascribed to other federal agencies under these laws. Considering the high costs associated with treatment of chronically ill and disabled people and the number of agencies that are either directly or indirectly involved in the provision of services to these populations, questions arise as to whose responsibility is the disabled Indian.

This article will examine issues associated with disability and its prevention in Indian populations (see Note). The assumption is made that, since IHS has the primary responsibility for ensuring the availability of comprehensive health services to Indians, it is the agency most likely to ensure the provision of comprehensive care for disabled Indians, as well as the one most able to play a major role in the prevention of disability in these populations. This responsibility resides in the agency's mission, its operational objectives and in its historic and legal relationship with Indians.

Disability and its Prevention

The subject of Indian health care and the controversies surrounding it are well documented in a recent Congressional report titled, Indian Health Care.(1) While the intent of this paper is neither to trace the history of Indian health care nor to assess its relative impact on the overall health of Indians, acquaintance with this report may be useful in understanding the crucial role that IHS plays in the broad area of health care in Indian populations, particularly in disability and its prevention.

Among the three operational objectives of IHS are two which have a direct impact on disability and its prevention in Indian populations. These are:

* to deliver the highest quality of comprehensive health care to Indian people; and

* to act as the Indians' federal advocate in health matters.

In implementing these objectives, IHS avails Indians of hospital and ambulatory medical services; preventive and rehabilitative services; and community and environmental health programs. In their implementation, furthermore, the agency assumes the role of primary federal advocate for all Indian health and health-related needs.(2)

Historically, IHS strategies evolved from public health models extant when IHS was established. Activities under this model were directed toward prevention of illness, chiefly through sanitation and control of contagious diseases and environmental hazards. With changing patterns of disease, resulting from either further exposure of Indians to the Anglo-American culture or the changing Indian lifestyle, IHS modified its health delivery model, incorporating new elements in response to dynamic Indian population needs. The focus on alcoholism, otitis media and diabetes are recent IHS foci reflecting the agency's response to these needs. Notwithstanding, elements of the original model have persisted. Despite an overall shift in the philosophy of public health in America, IHS philosophy continued to reflect perceptions of illness that are inconsistent with those of other public health agencies. This is particularly evident in the agency's manpower mix where the focus clearly reflects overemphasis on health manpower in service provision and in the management of IHS programs.

Prior to the establishment of IHS, U.S. public health agencies were increasingly focusing their attention on the health problems of individuals and society, directing much of their efforts toward breaking the barriers between prevention and treatment, and personal and community health. The greatest strides were made in the area of prevention. Operationally, prevention became a process that incorporated both the classical definition of prevention of disease onset with a new concept, that which emphasized prevention of the adverse sequelae of disease. This concept effected a broadening of public health programs to include services for the prevention, diagnosis and treatment of communicable diseases; protection of the health of mothers, infants and children of school age; prevention, detection and amelioration of dental, visual, hearing, and other problems; promotion of mental health; and, most importantly, control of chronic disease through more appropriate treatment strategies.

Even though the IHS mission and objectives address elements of the revised U.S. public health and model, there is little evidence to date to indicate that these elements permeate the IHS delivery system or its administrative structure. A case in point is the role of the agency in serving disabled Indians. Despite progressive legislation affecting these populations dating to the 1950's, and despite an unprecedented increase in the number of Indians with these conditions over the past two decades, IHS today has neither a specific focus on these conditions, nor a database allowing it to meet the challenges presented by them.

It may be argued that the responsibility for the care of the disabled Indian is not that of IHS. Certainly, based on current allocation of funds for disability among federal agencies, IHS can claim the role of a David, managing only a fraction of these allocations, often through a complex, tedious and costly process of reimbursement for services it either renders or contracts out with private practitioners. It may also be argued that since the agency's services are residual to other sources, and since Indians are citizens of the U.S. and, therefore, eligible for services provided to other U.S. citizens, the agency's responsibility toward the disabled Indian is limited by law and policy. Both arguments are valid; and both have been advanced by IHS. Responsibility, however, transcends issues of Indian health needs, health conditions and their actual or potential costs. It is derived from IHS's unique attributes.

Responsibility is inherent in the role of IHS in the overall health of Indians, the perception of that role by tribal and community entities, and the agency's proclaimed mission, goals and operational objectives. Outside the Bureau of Indian Affairs, no other federal agency has either the experience of IHS in Indian communities or has as close a rapport. In matters of Indian health, IHS is paramount. It is the only agency to whom Indians can turn. It is the Indian's health delivery system by Congressional mandate, notwithstanding responsibilities of other agencies, or policies created for or by IHS. Considering the limits of IHS's human and pecuniary resources, however, the question arises as to whether or not the agency can assume such a broad responsibility in the health of Indians. The answer is: it cannot.

Programs for disabled citizens permeate the federal bureaucracy. They reside in the various federal and independent agencies of the executive branch and constitute a complex network of organizations that administers more than $60 billion annually in behalf of disabled citizens.(3) Regardless of the uniqueness of its role in Indian health, or the perception of that role by Indians, IHS cannot assume responsibilities that transcend its own mandate. The area of prevention, however, is an exception. It is one that is historically linked to the IHS role in the overall health of Indians. The agency already has the mechanisms in place to carry out prevention responsibilities. With minimal support from other sources, it has the capacity to expand its current foci to embrace the needs of chronically ill and disabled Indians. This expansion would be consonant with its dual role as federal advocate and provider of comprehensive health services to Indian populations.

IHS: State of the Art in Disability and

its Prevention

The responsibility for prevention and alleviation of chronic illness and disability in IHS today is a function of local facility administrators. Because this responsibility is not based on an IHS servicewide policy, its assumption by these administrators is subject to local policies. As a rule, disabling conditions are considered high cost, non-emergent, and low priority conditions, subject to budgetary thresholds and to IHS servicewide management philosophy, constraints which limit not only the range of services rendered, but the number of people served by local facilities. Across IHS areas, prevention activities targeted at disability are limited and disparate.

While there is little disagreement within IHS today over the need for an articulated policy that would address the needs of disabled Indians, there is disagreement over the nature and extent of IHS involvement in disability and over the potential adverse effect that such involvement would have on IHS extant operations. The issues of concern, however, are overwhelmingly administrative and do not take into consideration changing health needs of Indian populations, particularly those related to disability.

The health of Indians today is a minor reflection of what it was three decades ago when IHS was established.(1,4-8) Life expectancy has been extended, infant mortality has been reduced and many infectious diseases that once plagued these populations are under control. Today's needs are different. The price paid for acculturation and improved health care has been an increase in the prevalence of disability. Changes in diet, for example, have increased the susceptibility of Indians to diabetes, which, in turn, has effected increases in end-stage renal disease, retinopathy and loss of limb. Decreases in mortality at either end of the age spectrum have increased the prevalence of mental retardation, epilepsy, congenital abnormalities, stroke, heart disease, and cancer. In addition, Indian accessibility to alcohol has led to increases in fetal alcohol syndrome and its related problems. These examples represent the tip of a larger iceberg of problems that have not bee lored b IHS, and ones that, nonetheless, are now being felt by Indian leadership and service providers.

The absence o a ge scale epidemiologic studies on disability in Indian populations is an indication that IHS has not, to date, considered its priorities in the light of the increasing prevalence and incidence of these conditions in these populations. An analysis of the agency's priorities indicates continued emphases on primary medical care, generally described as health maintenance and promotion activities. Although the agency employs a limited range of support staff, including social workers, nutritionists, audiologists, and health educators, staff activities are confined to health treatment and continuity of health care plants. The absence of a priority on disability has inhibited the development of essential activities to meet current needs. Its absence moreover, has negated the evolution of prevention schemes at any stage - primary, secondary or tertiary (see Note). It is in this specific area that change is needed and where change can directly affect the benefits that Indians receive from the immense pecuniary resources allocated by Congress for disability.

A Strategy for Change

Stemming disability requires a comprehensive and an interdisciplinary approach that would involve all administrative components of IHS as well as other agencies of the Federal Government with responsibility in disability. IHS, as primary advocate, would assume a lead role in defining its responsibility first. It would then elicit, from each agency, specific responsibilities that would support its role in meeting the needs of disabled Indians. The outcome of this approach is define in terms of a shared responsibility that, in the long run, would ensure provision of comprehensive and continuous services to Indians through gradual elimination of jurisdictional barriers. Action taken by IHS can ensure the success of this effort. Six action steps are proposed:

1. Establish an Interagency Task Force (ITF) on chronic illness and disability in Indian populations to address trends and issues affecting these populations.

2. Establish a clear policy to address the broad needs of chronically ill and disabled Indians, consistent with the agency's mandate, mission and operational objectives as well as with those of other federal agencies having jurisdiction over chronically ill and disabled citizens.

3. Establish within IHS program management structure an Office on Chronic Illness and Disability (OCID) with responsibilities that would cut across IHS programs that either serve or have a potential to serve chronically ill and disabled Indians.

4. Establish an areawide information system on chronic illness and disability in Indian populations to serve Indian tribes and communities, IHS Area offices, federal and state agencies, the private sector, and the range of planners, practitioners, researchers, and others who serve these populations.

5. Develop a plan to delineate agency responsibilities in chronic illness and disability and their prevention. This plan should include identification of IHS program components that might contribute to the implementation of the plan.

6. Establish a liaison and initiate dialogue with the Chair of the National Council on Disability on policy issues to address the needs of chronically ill and disabled populations. This dialogue should focus specifically on the mandate of the council and the manner in which such a mandate can effect improved (or expanded) services for Indians within the context of the Indian-Federal relationship.

The proposed steps are interrelated. A timetable for their implementation, however, will depend largely on the priorities that the IHS places on each, the time required to assemble a cadre of specialists to tackle each step and the availability of human and pecuniary resources to support their implementation. It may be assumed, based on recent Congressional actions, President Bush's address to Congress,(9) and federal and state agencies' interest in issues related to disability in Indian populations, that once IHS shows intent through appropriate internal agency action, other agencies would cooperate and contribute to the IHS effort.

The proposed action steps are complex, requiring policy decisions at the highest level of IHS, internal agency programmatic review and interagency cooperation. When examined from the narrow perspective of disability and its prevention, however, their implementation should not present problems considered unmanageable by IHS. Following is a description of the range of tasks and topics that might be considered under each step.

1. Guided by the Director of the IHS, a select, interdisciplinary group composed of IHS staff would be convened to define the parameters of responsibility of the Interagency Task Force within the context of disability and its prevention; identify federal agencies that have the highest contributory potential to the IHS effort on behalf of disabled people; select appropriate agency and tribal representatives for the ITF; outline responsibilities of the ITF; and establish a schedule for ITF meetings.

The range of issues to be considered by the ITF could include the mandates of agencies regarding disabled people, with emphasis on Indians; the available resources to carry out the mandates; jurisdictional responsibilities of agencies; and feasible areas of cooperation with the IHS at national, state and tribal levels.

While the ITF initial focus would be on defining responsibilities among federal agencies, in the long run it could provide a forum for discussion of a range of topics, guide the IHS in the initial phases of plan implementation, and provide other agencies with information about disability in Indian populations.

The ITF would be chaired by either the Director of IHS or someone appointed by him.

2. The IHS role as federal advocate for and provider of comprehensive health and rehabilitation services to Indians would be delineated within the

constraints of the agency's mandates. Based on this delineation, the IHS Director would issue a policy statement regarding this role. Its purpose would be to guide other agencies in their respective role as provider of services to disabled Indians; ensure consistency in the provision of services to chronically ill and disabled Indians at IHS area and facility levels; and guide tribes and Indian communities in their effort to plan effective local programs for disabled members.

3. As the IHS presently has no clear focus on disability, the establishment of a freestanding office on Chronic Illness and Disability would give focus to these activities. It could also be a seat for agency, interagency and tribal activities in this regard, providing guidance and information on a range of topics and acting as a policymaking and coordinative body.

The OCID would be staffed by experts representative of those activities in which the IHS will be involved. Selection of the team would be based on IHS guiding policy in prevention of and in disability. The structure and composition of the OCID could also comprise the model upon which IHS area offices would structure and staff their respective chronic illness and disability programs.

4. Current databases on chronic illness and disability in IHS area offices are severely limited in scope and purpose. As a major provider of comprehensive services to Indian populations, IHS is in the unique position to track health conditions in Indian populations, to compile state-of-the-art information and to focus attention on the provision of medical, habilitative and rehabilitative services.

5. The purpose of this action is to create a coordinative role for the Office on Chronic Illness and Disability. Through examination of program components of the IHS at the headquarters and area levels, administrators can assess and direct contributions of each group to the goals, financial structure and creative force behind the OCID.

Activities under this step would be guided by the IHS Director or his designate, in coordination with the associate directors of the Offices of Health Programs; Planning, Evaluation and Legislation; Health Program Development; Tribal Activities; and Environmental Health and Engineering.

6. The establishment of liaison and dialogue with the National Council on Disability is based on the mandate of the council and its recent focus on Indian disability issues. The council is the only federal agency with responsibility to address, analyze and make recommendations to the President and Congress on issues of public policy which affect people with disabilities. Hence, it is important for IHS to keep the council apprised of the needs of the chronically ill and disabled Indian.

The representative selected for the position of liaison should have access to the IHS Director or his designate, understand disability, have knowledge about habilitation and rehabilitation, and be experienced in federal and state programs that serve disabled citizens.

Conclusion

Policy coordination at federal and state levels creates jurisdictional barriers that impede service delivery to Indian citizens. Although these policies have not adversely affected the provision of medical care, their impact on services to the disabled Indian has been significant. As a federal advocate, IHS has the responsibility to ensure that this underserved population receives its share of this resource. The proposed IHS involvement is in disability and its prevention. To carry out its responsibility, six steps are recommended and discussed. In summary, these are: the establishment of an interagency task force on disability; an Office on Chronic Illness and Disability; an IHS-wide policy on disability; an areawide database and information system on disability; a liaison with the National Council on Disability; and the development of an agency management plan to ensure that the prevention initiative is carried out in a coordinated manner within the various components of the agency.

Opinions expressed in this article are those of the author and do not necessarily reflect the views of the Indian Health Service, the Department of Health and Human Services or the Department of Education.

Note

Within the context of this article, disability is defined as either a health condition which imposes limitations on an individual's normal development and activities or one which prevents or limits an individual's ability to lead a productive life; the latter is most often associated with work. Prevention is the elimination or reduction of those factors which either result in or contribute to disability. It is intervention before disability to ensure against further complications. Prevention may be primary, secondary or tertiary.

Primary prevention is the elimination of those factors that lead to disability. The process, however, is complex, since societies, and particularly individuals within those societies, vary in their susceptibilities to disabling conditions as a function of their unique behaviors, technologies and other attributes. The term primary implies the potential of development of disability, hence its strategy is based in affecting (specifically, reducing) the prevalence and incidence of the condition through indirect means. Public education and sanitation are examples of primary prevention.

Secondary prevention is early detection and treatment of a potentially disabling condition before permanent disability occurs. The term implies a high probability that a disabling condition will occur in the absence of specific and direct intervention activities. The primary tool of secondary prevention is screening; its target, individuals (or groups of individuals) at high risk of incurring disability or who exhibit symptoms of physical or mental abnormalities. Examples are periodic screening of Indian infants for otitis media and diabetes, conditions which are known to result in disability and to affect Indians more than other populations.

Tertiary prevention is the reduction of the potential adverse consequences of a disabling condition. The term implies the existence of a disabling condition, knowledge about the effects of that condition and strategies to ameliorate its potential adverse effects.

References

(1) U.S. Congress, Office of Technology Assessment, Indian Health Care, OTAH-290 (Washington, D.C.: U.S. Government Printing Office, April, 1986).

(2) U.S. Department of Health and Human Services, Public Health Services, Indian Health Service, A Comprehensive Health Care Program for American Indian and Alaska Natives, undated.

(3) U.S. National Council on Disability. Toward Independence: An Assessment of Federal Laws and Programs Affecting Persons with Disabilities - Legislative Recommendations, February, 1987.

(4) U.S. Department of Health and Human Services, Public Health Service, Indian Health Service, Summary of Leading Causes of Outpatient Visits: Indian Health Service Facilities, FY 1987. Doc #3799K(0223K), June 10, 1988.

(5) O'Connell JC (Ed). A Study of the Special Problems and Needs of American Indians with Handicaps Both On and Off the Reservations (I, II, III). Flagstaff and Tucson, AZ: Northern Arizona University and University of Arizona, September 14, 1987.

(6) Toubbeh JI, Handicapping and disabling conditions in Native American populations, American Rehabilitation, 11(1), January-March, 1985.

(7) Toubbeh JI, Larks and Wounded Eagles, American Rehabilitation, 13(1), January-March, 1987.

(8) Manson SM, Tatum E & Dinges NG, Prevention research among American Indian and Alaska Native communities; charting future course for theory and practice in mental health. In Manson SM (Ed), New Directions in Prevention among American Indian and Alaska Native Communities. Portland, OR: Oregon Health Sciences University, 1982.

(9) Building a Better America. Supplement to the President's Message to the Joint Session of Congress, February 9, 1989.

Dr. Toubbeh is Deputy Director, Sensory Disabilities Program, Indian Health Service, HQ-West, Albuquerque, New Mexico.