Caring for People with Disabilities: A Career-Long Commitment to Growth

Providing proficient and equitable healthcare for people with disabilities is imperative to healing the bodies and minds of patients. Research continues to demonstrate a mismatch in the experiences of both patients and physicians in terms of objective health outcome disparities for people with disabilities and equally valid subjective experiences. Longitudinal commitment to growth from each physician is crucial to the osteopathic model of medicine, as part of its uniqueness is emphasis on the value of developing diverse approaches to providing patients options to reach preventative health, functional, and quality of life goals for their unique bodies and minds. Physicians must use their significant positions of influence in each patient's life to become their advocates. 

The best options to improve access, equity, and inclusivity will change as the ability of each group to express their opinions grows. Physicians should expect how people with disabilities prefer to be addressed, prefer to be treated, and prefer to be advocated for to change over time. The presence of a disability must not impede a physician's ability to treat anyone with foundational respect. This discussion may provide a springboard for each reader's further research with select tips on improving the healthcare experiences of people with disabilities. The following sections contain guidance regarding improvements a physician can make for patients with disabilities in the family medicine setting. 

Choosing Equitable Language

Disability can be acquired or developmental and exists across a spectrum of differences in a person's body, mind, or both compared to what is considered typical. When speaking to or about patients who belong to one of these categories, the language physicians choose can impact a patient's sense of trust and confidence that their physician is considering their unique situation and has their best interests in mind.  

Person-centered language prioritizes an individual's identity as a person over other factors. For example, one would use the phrase "person with a disability" to describe someone who prefers to be addressed this way. On the other hand, identity-centered language prioritizes a person's identity. For example, many disabled people prefer to include disability as a part of their identity and would prefer to be addressed as a "disabled person." Similarly, people who do not belong to one of the mentioned groups should be referred to as "people without disabilities" or "non-disabled" people. No singular correct answer exists when it comes to how disabled people prefer to be addressed, as each person's understanding and integration of disability status with their identity is valid. Preference for language broaches the larger topic of prioritizing the opinions of disabled people when it comes to what is said about them or chosen on their behalf. 

When searching for the best way forward in medical management, policy, or learning about preferences, search for resources from organizations led by individuals who belong to the disability status their organization represents. Embodying the crucial disability rights mantra "nothing for us without us," the Autistic Self-Advocacy Network is a great example of a resource physicians can explore to stay up to date on community preferences, healthcare equity issues, and human rights topics regarding the autistic community. When learning how to support a disabled person medically, socially, and as a friend, it may feel daunting to keep every medical best practice and community preference in mind. However, it is important to recognize we will make mistakes when learning new skills, so we should celebrate them as a signal that we are making the choice to learn a new skill on top of our continuing medical training. Cori Poffenberger, MD, is a physician and a mother to her daughter who has spina bifida. She summarizes her lived experience navigating equitable language in the following quote, "The language we use around disability should ensure people feel valued and not objectified. My daughter has spina bifida, she does not suffer from spina bifida. My daughter does not use a handicapped restroom; she uses an accessible restroom. Her wheelchair is an important tool that enables her freedom and independence; she is not 'wheelchair-bound.' She is not an inspiration nor is she a burden. Her twin brother is not the 'normal' one. He is a child without a disability."  

Tools for Access

Accommodations in daily life help people with disabilities gain more equitable access to education, health services, employment, and their personal goals for quality of life. The following discussion includes a few examples of how physicians can help people with disabilities access accommodations. 

Supported Decision-Making 

Historical practices, such as defaulting to guardianship, often restrict the right of people with disabilities to be decision-makers about their living situations and healthcare. Physicians can help maximize their patients' autonomy by initiating discussions about and assisting with documentation regarding supportive decision-making as a less restrictive alternative to guardianship. Guardianship, sometimes called conservatorship, is a legally-binding process that takes away an individual's right to make decisions for themselves and gives that authority to another individual. Guardianship is sometimes chosen for people, especially when they are children, as some healthcare or legal professionals may present it as the only option to ensure their safety and livelihood. Guardianship limits a disabled person's autonomy in all decisions. It can affect the medical care they receive, where and if they work, and how they live, so it should be reserved only for people who absolutely require it. Supported decision-making, in contrast, is a non-legally-binding process that maximizes autonomy by affirming that with the right support, people with disabilities can and prefer to make decisions for themselves whenever possible. The National Resource Center for Supported Decision-Making is a great place to learn how to integrate supportive decision-making for people with disabilities that you may care for. 

Disability Placards 

Disability placards and plates permit vehicles to park in designated spaces that are often more accessible to building entrances/exits. They also allow more space for wheelchairs, meaning a patient who does not have access to this accommodation may not be able to board or exit a vehicle when traveling. Considering the immense potential impact, physicians must take the task of evaluating for and providing disability placards seriously. Patients may approach you to approve their placard, as they require medical certification by an authorized medical provider. Both temporary and permanent disability placards are available. Physicians should stay updated on individual state laws for qualifying conditions and when placards expire. Providing support for patients in applying for disability placards to access equitable travel accommodations should remind us it is important to assume the best in our patients and believe what they say about their experiences and condition. Everyone benefits when organizations provide improved access to fair and equitable accommodation for people with disabilities. 

Emotional Support and Service Animals 

Patients with disabilities may ask their physician about emotional support animals and service animals, so it is important to prepare to provide direction for people seeking this path to accessibility. The American Disabilities Act (ADA) states that service animals include any dog specifically trained to perform tasks that assist the individual with needs specific to their disability status. Examples of these tasks include guiding people who are blind, alerting people who are deaf, providing improved mobility for people who use wheelchairs, and alerting and protecting a person experiencing a seizure. The ADA protects the right to use service animals, meaning they are permitted fair and equal access to public areas, housing, and places of employment. Emotional support animals provide different services but are still important and valid means of accessibility many people rely on. Emotional support animals provide support and comfort for people who experience disabling distress in their minds or bodies. Regulating agencies may permit emotional support animals in housing, but they may still deny them access to public areas due to a lack of legal protection. If patients have a qualifying disability, they can apply their diagnosis to follow individual state regulations to have a service or emotional support animal approved. Physicians can support patients by providing guidance on applying for approval. 

While this discussion introduced a few topics to provide medical care for people with disabilities, many more important topics exist. Physicians and medical students should commit to continued learning and be open to changing our perspectives as we give our utmost to creating a world of equitable access to healthcare for people with disabilities. Disabled people belong, and physicians should affirm this fact with their words and actions whenever possible. Our patients, loved ones, and physician colleagues are all groups that contain people with disabilities, and we should be highly motivated to devote our personal growth through continuing medical education to empower them. 

Additional Resources

Americans with Disabilities Act 

Disability Rights Education & Defense Fund 

Your state's Department of Motor Vehicles