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Public Health Considerations of People with Disabilities
Arun Karpur, MBBS, MPH, Melissa J. Bjelland, PhD, and Susanne M. Bruy ere, PhD, CRC
INTRODUCTION
The Institute of Medicine (IOM) [1] refers to disability as ‘‘the nation’s largest pub- lic health problem,’’ one that affects not only the health of people with disabilities, but also their immediate families and the population at large. Between 40 and 50 million Americans report a disability,[2] with various studies projecting an increas- ing trend in prevalence of disabilities in the United States and globally.[3–6] People with disabilities account for the single largest demographic group with unique needs for maintaining health and effective daily functioning that deserve due consideration when examining challenges to the public health system.
Traditionally, the function of a public health agency is described across three areas: (1)assessment(that is, systematically collecting and compiling health-related information); (2)policy development(that is, developing policies that are designed to improve the health and well-being of people); and (3)assurance(that is, assuring people that services necessary to maintain their health and well-being are provided through regulations, encouraging individual action, or through direct service deliv- ery).[7] With respect to people with disabilities, public health has not performed adequately across these three central roles because federal databases have been inconsistent in the use of disability identifiers and in recording public health issues of concern to persons with disabilities; policy development has tended to marginal- ize the needs and rights to social participation of persons with disabilities; and assurances have been minimal.[2]
The evolving definition of disability poses a key hurdle in understanding what is needed for people with disabilities to maintain good health and functioning.
The medical model of disability adopted within public health defines disability as a condition resulting from an underlying pathology. This model proposes only individual-level etiological factors (for example, injuries, accidents, and congenital abnormalities) and equates disability with a state of being ‘‘unhealthy.’’ Conse- quently, much of the focus in public health has remained in the area of ‘‘disability
prevention,’’ with a lack of attention to the health needs of people living with disabilities.
The social model recognizes disability as a dynamic state resulting from the interplay between individual functioning and societal and environmental reactions to a person with disability. This model emphasizes the idea that people with disabil- ities can lead a healthy and productive life with necessary supports. The U.S. sur- geon general’s call to improve the health and well-being of people with disabilities and the inclusion of several health and wellness indicators in national surveys are indications that the broader social model of disability is gradually being adopted within the field of public health.[5]
Health care policies grounded in the medical model, however, continue to pose barriers to accessing health care, prevention, and rehabilitation-related services for people with disabilities. Although advances in assistive technologies have, in gen- eral, enhanced access for people with disabilities to most public facilities and trans- portation, they have not immensely increased their access to health care facilities (for example, many health care facilities and clinics remain physically inaccessible and many lack adaptive medical equipment to adequately serve the health care needs of people with disabilities). Contributing to this could also be the wariness of people with disabilities to be serviced by a system so medically model driven.
Longer life spans and the aging of the baby boomers will combine to double the population of Americans ages 65 and older during the next 25 years. By 2030, the projected 72 million older adults will account for nearly 20 percent of the U.S.
population.[8] Older age is often accompanied by an increased risk of chronic dis- eases and disorders, with large proportions of older Americans reporting a variety of chronic health conditions such as hypertension and arthritis.[9] The nation’s health care spending is projected to grow by 25 percent as a result of these demo- graphic changes.[3] The public health system needs to be better equipped to effec- tively deal with these challenges.
This chapter highlights the role of public health in improving the health, well- being, and overall quality of life for people with disabilities through the considera- tion of epidemiological trends in disability prevalence, including issues related to health disparities, the legal and regulatory environment affecting access to preven- tive and curative health services, methods of measuring and tracking the population of people with disabilities, and specific priorities in public health. Future directions describing ongoing efforts (in the United States and globally) in public health pol- icy, program development, and research to improve health and well-being of people with disabilities are addressed as well.
MEASURING THE DISABILITY POPULATION
The multifaceted nature of disability makes it a challenge to adequately define, which limits the ability of public health agencies to systematically respond to the health care needs of people with disabilities. Over the years, the perception of disabil- ity has evolved from a treatable condition, initially, to a dynamic process manifested through the interactions of pathologies, impairments, activity limitations, and the envi- ronment, including social expectations.[1, 10, 11, 12, 13] Despite refinements to its meaning, no concise formal definition comprehensively encompasses all individuals 182 GLOBAL ISSUES IN PUBLIC HEALTH
affected by disability. Currently, the federal government outlines 67 disparate legal definitions across its many programs,[14] while population surveys generally tend to contain broad questionnaire items designed to identify the population with disabilities.
The range of classifications results in many unique, noncomparable indicators of the aspects of disability from these myriad sources.[15]
Over the past few years, there has been a movement toward a universal lan- guage and a common framework to describe health and health-related states, includ- ing disability.[13] Several U.S. national surveys recently have implemented or proposed new survey designs to address the changing needs of disability advocates, including the incorporation of a standard set of six disability indicators.1While re- vised questionnaires may hinder longitudinal characterizations of the community of individuals with disabilities in the years immediately surrounding survey redesign, the standardization of disability questions is anticipated to enhance our understand- ing of the variation in measurement and outcomes across surveys for this population going forward.[16]
In addition to addressing inconsistencies in survey measures, another priority is establishing a framework to develop a global common nomenclature.[17, 18] The International Classification of Functioning, Disability, and Health (ICF) provides a consistent language to describe the components of health and health-related condi- tions for people with disabilities across disciplines and between countries.[19] The ICF not only includes functional assessment, but also considers environmental and contextual factors that affect a person’s functioning.[13]2
MEASURING HEALTH STATUS
Similar to disability, health is complex to describe because it embodies physi- cal, mental, and social well-being and not merely the absence of disease.[20] Most measures of health status rely on a medical model measuring functional limitations [21] and disability is equated with ill health.[22] A widely used concept in meas- uring health is health-related quality of life (HRQOL). HRQOL is defined as the extent to which health affects an individual’s (1) ability to function and (2) per- ceived physical, mental, and social well-being.[23] The functional component of HRQOL includes the Activities of Daily Living (ADL) and the Instrumental Activities of Daily Living (IADL).3The HRQOL measures are used to understand health disparities among disadvantaged populations, and to assess the impact of public health interventions.[24] They also are used to describe the ‘‘burden of disease,’’ or the extent of morbidity among people with chronic illness.[25]
1. The surveys include the American Community Survey (ACS), Current Population Survey (CPS), National Health Interview Survey (NHIS), and Survey of Income and Program Participation (SIPP). The six measures cover hearing, visual, mental, physical, self-care, and go-outside-home disabilities.
2. A review of the literature regarding the ICF can be found in Bruyere, Nan Looy, and Peterson.[137]
3. ADLs are personal care activities such as bathing, dressing, eating, walking across the room, transferring, and going to toilet. IADLs are activities essential to maintain independent living such as shopping, managing money, and doing household work (for example, cooking, laundry, and cleaning).