Learning Objectives
By the end of this section, you will be able to:
- Define the common obstacles to health care access for chronically ill patients
- Explain the social and financial considerations for patients with chronic diseases
- Summarize the role of the home care nurse and criteria for patients to receive home care services
Many barriers may limit health care access for individuals with disabilities. These barriers can be financial, geographic, or social, in addition to other external environmental factors. These barriers are closely related to the social determinants of health, which are defined as the conditions in which people are born, work, grow, live, and age (see Figure 2.2) (CDC, 2022b). These determinants can significantly influence not only an individual’s access to health care but their general health status as well.
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Race and ethnicity can have a significant impact on an individual’s access to and ability to afford quality health care. This fact sheet lists data on health disparities for members of various racial ethnic groups.
Access to Health Care
Health care access has been and continues to be an important issue both in the United States and globally. Some individuals, especially those with disabilities and chronic illnesses, may have more difficulty obtaining adequate health care services. This can be due to many factors, including lack of health insurance, low socioeconomic status, limited (or lack of) transportation, geographic location (e.g., patient lives in a rural area without nearby health care services), and work and schedule constraints.
Social and Financial Considerations
Social and financial factors that may influence an individual’s ability to access health care include employment status, transportation, and geographic location. Coupled with a chronic illness or disability, these factors become even more complex, making it more difficult to access necessary health care services and manage their illness. For example, members of a lower socioeconomic class may struggle to afford health care or to physically access it due to geographic remoteness.
Employment
Employment status can contribute to lack of health care access in many ways. First, individuals with chronic illness and disabilities may have limited employment options, forcing them to take lower paying jobs without adequate health insurance coverage. Though employers are required to provide reasonable accommodations because of the ADA, they do not always comply with the law, and government regulators may lack the resources to catch and remedy noncompliance. Additionally, some jobs, such as those involving manual labor, may not be able to provide accommodations that allow for certain individuals to effectively complete the work required. Individuals with severely debilitating chronic conditions may not be able to work at all.
Some individuals may have to take lower-paying jobs and end up living in poverty, making it nearly impossible to afford health insurance or pay for health care services out of pocket. Additionally, many of the job opportunities available to individuals with disabilities are only offered part-time and, therefore, do not provide benefits such as health insurance coverage. This further reduces health care access because these individuals are unable to pay for their own private insurance or afford out-of-pocket costs for services. Though there are financial resources available for these individuals (as shown in Table 9.2), they often do not receive enough assistance and are unable to afford adequate health care.
Transportation
A lack of, or limited access to, transportation is another factor that can negatively affect health care access. Findings from a 2020 national survey show that 5.8 million Americans annually delay health care because they do not have transportation (Wolfe et al., 2020). This survey also determined that individuals living in poverty and those with chronic health conditions are disproportionately affected. This factor is compounded when many individuals with disabilities cannot use public transportation options. The ADA requires reasonable accommodations, including public transportation, but the provided accommodations are not always adequate to allow all people with disabilities to use them. This inadequacy of resources is related to multiple factors, including a lack of funding and the wide diversity of disabilities experienced in society. There may also be other constraints, such as the financial cost of taking public transportation, limited routes that do not service certain places, or limited schedules that do not coincide with an individual’s availability.
The private sector has made some efforts to address this problem. For example, modern vehicles are increasingly built with adaptive equipment, including greater integration of hand controls and assistance straps, and ramps for exiting and entering the vehicle (National Highway Traffic Safety Administration, n.d.). However, more is needed. Federal legislation to expand the availability of low-cost transportation has been discussed over the past several years but is still being developed (Federal Transit Administration, 2023). Until major improvements are made to increase access to public transportation throughout the United States, this remains a major barrier for many people, especially those with chronic conditions and disabilities.
Residence (Geographic Location)
Geographic location is another factor that can affect an individual’s access to health care. Just as with a lack of transportation, living too far away from health care facilities can decrease an individual’s ability to obtain necessary services. An additional challenge in rural areas is the lack of the appropriate health care specialists. Partly to address this problem, there has been a shift in recent years to use more telehealth, which refers to the provision of health care remotely via telecommunication devices and technology. Insurance plans are increasingly providing coverage for telehealth services (US Department of Health and Human Services, 2023). Unfortunately, they are not always appropriate or practical, because not all individuals have access to high-speed Wi-Fi or other necessary technology for telehealth. Furthermore, not every medical service or procedure can be administered remotely. Even so, for individuals who lack convenient, in-person access to health care providers, the use of telehealth can be quite beneficial.
Self-Care and Personal Assistance
Another factor that can influence health care access is related to the individual’s ability to perform self-care and the degree of personal assistance they require from others. Although some people with disabilities and chronic conditions can live independently or with family members, others may reside in skilled nursing facilities or other assisted living institutions, where they require extra help in performing ADLs and getting to and from appointments. This makes health care access more difficult because these individuals may have to rely on others to take them to their appointments or to interpret or implement their treatment plan. Most assisted living facilities have programs in place to help with these needs, but many facilities are short-staffed, and caregivers are not always able to effectively assist patients with their health care needs (Heiks & Sabine, 2022).
This factor becomes even more complex when you consider that many individuals with disabilities are still living on their own at home and do not have access to caregivers or other services that would be provided in a facility setting. These individuals often must rely on family or friends for transportation or other help, which can be a significant barrier to health care access.
Home Care
Although some people with disabilities are unable to work, those with severe, debilitating disabilities may not even be able to leave their homes. In these situations, home nursing care may be required, but certain criteria must be met first. These criteria will vary slightly depending on the agency providing the care and the patient’s insurance. For example, Medicare has the following requirements for home care (CMS, n.d.):
- leaving the home is not recommended because of the patient’s condition (e.g., severe immunocompromised)
- leaving the home requires major effort
- patient has trouble leaving the home without assistance (e.g., walker, cane, wheelchair, crutches, special transportation) because of substantial illness or injury
Medicare covers the following home care services, though some benefits are temporary or require patients to meet certain criteria:
- medical equipment and supplies for use at home
- medically necessary skilled nursing and/or home aide care
- medication administration
- physical and occupational therapy
- social services
- speech-language pathology services
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Reimbursement for home care services from Medicare and Medicaid requires strict criteria for patients to qualify for the service. The Outcome and Assessment Information Set (OASIS) tool was created in 1999 and has been proven to be a reliable and valid instrument to determine reimbursement. The tool collects subjective and objective data on the patient’s disease profile; physical, psychological, and psychosocial functioning; and living arrangements. The assessment is conducted at the initial intake visit when a patient is seen for home care (CMS, 2023). Visit this manual for more information about the OASIS.
Level of Skilled Care Required
It is important to note that patients with chronic illness and disability who are admitted to an inpatient setting for care will require an evaluation before discharge to determine the appropriate level of care after leaving the hospital. Often, patients with disabilities have been living at home alone, but after assessment in the hospital, they are determined to be unsafe in the home setting and to require a higher level of care, such as home health care or transfer to an assisted living or rehabilitation facility.
For example, many older adult patients living with musculoskeletal disabilities related to age have been living alone but are brought to the hospital after a fall or other injury. While in the hospital, a discharge evaluation is performed in which the safety of the patient being returned to their prior living situation is assessed. This evaluation process is conducted by care providers from many different disciplines, including medicine, nursing, and physical and occupational therapy. After determining what level of care the patient will require upon discharge, an interdisciplinary team, usually led by social services, works to find the patient the necessary resources to obtain this level of care. The main goal of the interdisciplinary team is to ensure safe patient discharge.