42.2 Healthcare Approach to Disability

Moral Model

The moral model of disability is a long-standing belief pattern that explains disability as a defect in functioning related to the individual’s moral character. Traditionally, this model described individuals with a disability as weak and often having brought about the disability through some negative action or inherent weakness in their character. Although this model does not represent the current social acceptance of disability, some core aspects persevere in specific cultures and general society. Stigma related to obesity, drug addiction, and type 2 diabetes are examples of lingering beliefs in the moral model. For example, an individual in recovery who is receiving addiction treatment and remaining drug-free is covered under the ADA employment and disability benefits, but an individual who continues to use drugs or relapses into drug use after recovery is not (ADA National Network, 2024b). Overall, the moral model does not uphold inclusion, equality, or individual rights but rather blames the individual for disability and promotes stigma and negative social attitudes toward disability. By recognizing this model and associated stigma, nurses can better advocate for individuals with a disability.

Medical Model

The medical model of disability explains disability as a consequence of a trauma, illness, or congenital health condition that is out of the control of the individual. The medical model views disability as a problem stemming from a disorder within a body system (UCSF, n.d.). This disorder causes the individual to have physical or cognitive abilities outside the established norm for age, gender, and demographic group. Medical diagnoses often guide the intervention and treatment processes in the medical model rather than focus on the individual's lived experience of disability. Therefore, interventions based on the medical model focus on identifying the cause of the disability, treating this cause, preventing complications, and, in some cases, curing the disability. The medical model also assumes that individuals with disabilities (Association of University Centers on Disabilities, n.d.):

• compare their functional level with that of others
• have problems associated with their disability
• must learn to cope with physical and cognitive differences
• must rely on experts for treatment and health
• need help and support from others

Although the medical model does have merits in working toward treating and curing disability to help individuals integrate into society, there is also a high potential for the creation of a stigma by assuming there is something wrong with individuals with a disability and that the disability needs to be fixed. Individuals with disability, particularly those with long-standing or congenital disability, may not see themselves as having a problem; rather, they accept their cognitive and physical functions for what they are and learn to move through life in a way that is normal for them. Consider an individual born with deafness. The medical model will try to apply assistive devices and create a hearing pattern closest to what is considered normal. However, individuals with deafness may not see treatment or cure as a path. They may accept their hearing impairment and use accommodations and specialized language to interact in society.

Functional Model

The functional model of disability is closely related to the medical model and assumes a cause-and-effect relationship between a physical or cognitive deficit and limitations in daily function. The functional model of disability emphasizes the interaction between individuals and their environment, focusing on removing barriers and accommodating diverse abilities to promote equal participation and access. It considers disability as a social construct shaped by environmental factors, rather than solely focusing on individual impairments. The functional model focuses more heavily on the impairment caused by an underlying medical disease or condition and the way this impairment affects an individual ability to perform necessary daily functions. In contrast to the medical model, in which the medical condition itself is the focus of treatment, interventions, and support, the functional model focuses on impairments experienced by the individual, such as (UCSF, n.d.):

• difficulty with self-care activities
• impaired decision-making skills
• impaired mobility
• inability to live independently
• inability to work or produce income

Rehabilitation Model

The rehabilitation model of disability, sometimes referred to as the functional limitations model, conceptualizes disability as a single impairment or a collection of impairments or deficits experienced by an individual that can be improved through rehabilitation. In this model, rehabilitation, or returning to a previous state of health, assumes that a disability can be cured or treated to bring an individual back to better health. This model focuses on restoring function and maximizing independence through medical interventions, therapies, and assistive devices. It views disability as a result of impairments that can be mitigated or managed through rehabilitation efforts. The goal of this model is to enable individuals to adapt to their impairments, learn new skills, and maximize their participation in various aspects of life. The rehabilitation model operates under the assumption that individuals have previously experienced little to no impairment. However, this premise may not be true for individuals with congenital impairments or progressive diseases leading to disability. This model also relies on the idea that specialized rehabilitation caregivers and specialists are necessary for the treatment and care of patients with disability. It may apply, however, to some individuals with acquired disability or impairments that are expected to improve over time, for example, in some instances of TBI, musculoskeletal injuries, and stroke.

Social Model

The social model of disability focuses on disability in the context of the individual’s physical and social environment rather than on an individual bodily impairment. The social model explains limitations and difficulties experienced by individuals with disabilities due to environmental, social, and community factors (Association of University Centers on Disabilities, n.d.). In the social model of disability, the individual's physical condition is considered an impairment and becomes a disability when physical and social environments create barriers to functional life. Consider an individual with MS who uses a wheelchair and is attempting to enter a restaurant with a stairway at the entrance. In the social model, disability is viewed only because no alternate access (e.g., a ramp) is available, in contrast to a medical model view, which explains the disability in terms of the physical impairment of the individual causing the inability to climb the stairs. Although disabilities are seen as individual impairments in the medical and functional models, the social model views disabilities in a more generalized sense. This way, accommodations to buildings, educational platforms, schools, hospitals, and other public spaces can be equipped with accommodations that will benefit many people who struggle with similar barriers regardless of their specific disability.

Biopsychosocial Model

The biopsychosocial model of disability views impairments as the interplay between medical diagnoses and associated impairments and societal barriers. This model combines ideas and concepts from the medical and social models of disability. In this framework, medical diagnoses associated with impairments are considered in conjunction with societal barriers that individuals with these impairments face. By incorporating both concepts, the biopsychosocial model creates a more comprehensive view of disability as experienced by the individual and within society. This theory was first proposed by George Engle in 1980 and is currently used as the framework for the WHO ICF (Petasis, 2019). By addressing the specific impairments of each individual and incorporating techniques to reduce societal barriers, individuals with a disability can experience more inclusion, fewer obstacles, and limited discrimination on a community level. The ICF model considers similar concepts as the biopsychosocial model, including (CDC, n.d):

• ability of individuals to participate in society
• activity limitations
• beliefs and attitudes about impairment (psychosocial)
• environmental factors that are obstacles to individuals with disabilities (social)
• impairments in body function and structure (biological)

Structural Barriers to Accessibility

Structural barriers to health care depend on rural versus urban settings, transportation options, and building layout. Specific structural barriers in and around healthcare facilities include narrow doorways, manual doors, high countertops, elevated exam tables, lack of bathroom grab bars, street curbs, stairways, and lack of public transportation. Structural barriers compound other limitations in healthcare access. These are often the last barriers encountered after an individual has overcome stereotypes and secured an available location to acquire healthcare services.

Stereotypic Attitudes

A stereotypic attitude is a fixed, oversimplified, and generalized perception of individuals in a specific demographic group that stems from internal and external biases. Although stereotypes are the generalizations themselves, stereotypic attitudes are the individual perceptions or responses influenced by those generalizations. The term internal bias refers to individual thinking patterns that affect how an individual person views and treats others. An external bias is based on societal attitudes and cultural beliefs but also affects how others treat individuals. Stereotypes contribute to discrimination, both unintentional and overt, as well as stigma and prejudice. Unfortunately, stereotyping often leads to prejudice, in which an individual, even a healthcare provider, makes a judgment or opinion about a person with a disability before obtaining knowledge of their circumstance. These prejudices may be based on prior personal interactions, cultural perceptions, or lack of knowledge. Stereotyping and prejudice lead to stigma related to disability. A common stereotype of individuals with disabilities is the assumption that disability parallels a poor quality of life. In addition, some individuals see disability as an unhealthy state. Stigma may also affect the way individuals with disabilities perceive themselves within a social environment. Stigma leads to labeling and can harm the mental health of individuals with disabilities if care providers do not take special care to address and reduce stigma. Nurses must provide inclusion and support without overcompensating and contributing to the additional stigma of overdependence.

Stigma and stereotyping can lead to both internal and external consequences, such as social avoidance, internalizations, shame, discrimination, blaming, and violence. In contrast, individuals with disabilities who feel empowered may find strength in positive interactions, including diversity pride, social integration, acceptance, patience, inclusion, and education.

The most important role of the nurse in recognizing, preventing, and avoiding stereotypes and bias is advocating for patients. Nurses must strive for an atmosphere of respect. In developing an attitude of advocacy, the nurse tries to deeply understand the patient experience, with empathy and compassion, and build a framework of care and planning around this.

Lack of Access

Lack of access may occur on a small or large scale. Individuals may encounter inaccessibility or trouble with communication at one facility or on a systemic level in a community without updated infrastructure and funding to provide these updates. Specific access concerns include living environment, transportation, and information access.

Transportation barriers may be associated with inaccessible vehicles, lack of public transport, lack of affordable transportation options, and inclement weather–associated issues. These may be affected by urban versus rural living, because rural-living adults experience significantly more physical barriers to care than their urban-dwelling counterparts (RHIhub, 2024). Another important factor that affects individuals’ willingness to seek health care is financial security. Individuals who are uninsured or underinsured with a lack of adequate health insurance often delay seeking healthcare treatment until dire circumstances require entry into the healthcare system. Although disabilities are not rare overall, many conditions with associated disabilities are rare. This may limit individual healthcare providers’ knowledge of specific conditions. This can be overcome by healthcare provider education, but initial encounters may present a barrier to care for these individuals.

Communication Strategies

Individuals with disabilities have legal rights to accessible care. This care must include appropriate communication to provide the individual with a treatment plan and health recommendations that they can understand. Using person-first language, such as referring to “individuals with disabilities” rather than labeling them by their disabilities, emphasizes their personhood and dignity (CDC, 2022). For instance, it is best to say an “individual with diabetes” instead of a “diabetic patient,” as this approach emphasizes their identity as a person first, with diabetes being only one aspect of who they are. For individuals with intellectual disabilities, treatment, and care planning may directly involve a caregiver or family member. However, many people with disabilities live independently and manage their own health care and daily lives.

Regardless of whether a disability is sensory, intellectual, or physical, appropriate communication is critical. Some effective communication strategies are universal and can be applied to individuals with varying impairments. Other disabilities, such as vision and hearing impairment, or developmental, cognitive, or intellectual disabilities, require specific communication techniques and accommodations (Table 42.2).

Qualified sign language interpreters, assistive listening devices, and Braille or large-print reading material are other possible accommodations for these sensory disabilities. Ensuring that an interpreter is accessible is required by law.

Accessibility of the Health Care Facility

All individuals, despite their physical, cognitive, or psychological ability level, have the right to access safe, quality health care in their community. Full and equal access for all individuals is required by law under the ADA. This encompasses physical accessibility, appropriate communication, and other reasonable modifications to ensure access by all. All healthcare facilities, including hospitals, outpatient primary care and specialty clinics, pharmacies, and dental practices, must comply with ADA rules for providing accommodations. In addition to the ADA regulations, legislation is in place to maintain the accessibility of health care for individuals with disabilities. The Rehabilitation Act protects individuals against discrimination based on disability at any federally funded facility or any facility receiving federal financial assistance. This includes many hospitals, clinics, and ancillary healthcare facilities. Although they are not held to stricter requirements, healthcare facilities must ensure accommodations similar to that provided in other public spaces. The U.S. Department of Justice upholds enforcement to ensure that requirements are met.

Accommodations

In some cases, policy modifications may be necessary to accommodate individuals with a disability, such as allowing a companion to accompany the patient into a procedure for assistance and allowing for service animal access. Adjusting schedule flow and timing to accommodate psychological impairments such as anxiety is another possible accommodation. Accessible health care also includes allowing for and ensuring adequate digital access to records. Creating options for video telehealth and telephonic visits, as appropriate, for individuals with a significant disability that limits their ability to present in person for healthcare evaluation is crucial. Facility accessibility focuses primarily on physical aspects of the building environment and includes the following specific factors outlined by the ADA (ADA National Network, 2024a):

• appropriate width of doorways and passages
• dedicated disability-accessible parking spaces
• lever-style door handles
• wheelchair-accessible bathrooms with grab bars (Figure 42.3)
• wide and clear pathways through the facility

This may mean that facilities make changes to improve physical access, such as installing ramps, revising entry and doorways to comply with ADA requirements, or providing an alternative entrance.

Figure 42.3 A community park provides an ADA accessible bathroom and a pool access chair for individuals with disabilities. (credit: modification of “Pool access chair in accessible toilet, Runcorn Swimming Pool, Runcorn DSCF6197” by John Robert McPherson/Wikimedia Commons, CC0 1.0 Public Domain)

The concept of universal design emphasizes an inclusive approach to structural building and design. Instead of adding accommodations after the structural design, a universal design begins with a plan to make the environment accessible and functional for most individuals. Due to building age, this idea may only be standard in some healthcare buildings. However, it is essential to consider accessibility when creating new spaces, upgrading medical buildings and environments, and considering community infrastructure upgrades (CMS, 2017).