Care vs. Empowerment

Health care professionals and people with disabilities agree that the health care system for disabled individuals has room for improvement. How to proceed with designing and implementing an improved system appears to present a daunting challenge for both parties involved because of the differences over goals, timelines, roles, needs and expectations. Getting a better understanding of both sides of the spectrum may be useful for building a framework that empowers everyone.

Dimensions of the Problem

Care vs.Empowerment

Health care professionals are trained to work in a system that emphasizes care for diseases that can typically be cured. People with disabilities come to this system with conditions that often impact their lives in ways requiring more than a cure for an impairment. This creates a need for access to the kind of information that will empower the disabled person to have maximum control over their life and ensure support for their decisions. The goal is to find an appropriate balance because sometimes the disabled patient is simply needing the care that the health professional can offer.

Whole Person Treatment

Too often the standard response of the health care system is to “fix the problem.” A deaf person, for example, may need a cochlear implant to hear better, yet this solution does not address the social and psychological aspects of the person’s hearing impairment. Focusing solely on the person’s medical problem and not addressing the emotional and social needs of “the whole person” is the narrow viewpoint that our present health care system still may take. The diagnosis and medical problems are not the only means of defining patients. Elements of self-definition may also include: lifestyle, identity, and culture.

Cultural Diversity

Minorities with disabilities encounter greater difficulties with the present health care system. A cultural divide separates the two groups and doesn’t allow the group space to get to know each other better. There is no “common language” to talk about goals, expectations and roles. Seven-minute clinic visits provide little opportunity for creating better understanding between both parties.

Structure and Financing

The current health care system structure and its financial approaches hamper comprehensive and appropriate responses to the needs of people with disabilities. Clinicians who must follow the guidelines that are in place often are not able to treat their patients with the respect and dignity that they give to an able-bodied patient.

Differing Needs

A person’s disability may complicate their interactions with the health care system. For instance, a blind patient may need extra assistance getting up on the examining table. Recovery from surgery may take longer for the disabled individual.

Strategies to Bridge the Differences

Several strategies can make patient/clinician encounters more productive. Changes are needed on both sides of the relationship to improve the response towards the patient’s needs and expectations.

Empowerment Strategy

Clinicians can begin by sharing power and information with their patients, treating them with respect, valuing their insights about their condition, and involving them in all aspects of decision-making.

Persons with disabilities, as empowered patients, can assume a more proactive role in managing their care and the medical consequences of their disability. To make the most of their brief encounters with clinicians, they can prepare for their office visits (rehearsing their questions, if necessary) and strive to keep the visit focused on their – not their clinician’s – agenda.

Getting more and better factual information about conditions and treatments can benefit the disabled individual as well as the clinician. A person with disabilities is the logical source for information about the impact on their disability on their lives and any changes in their health that occur between visits to their clinicians. This information gives the clinician a chance to become more educated about what to look for and how to respond to changes.

Pilot Centers

Strategies to change clinicians’ perceptions and behavior must be sustained over time, such as repeated exposure to patients with disabilities during their clinical training. Even then, however, it may not be unrealistic to expect all clinicians to become adept at treating persons with disabilities. An alternative strategy may be to concentrate care in a few clinicians who are good at treating such patients and create well-recognized and accessible centers of excellence.

Disabilities Advocate

Identify a Special Advocate to help persons with disabilities navigate the health care system.

Current programs that have begun to better serve persons with disabilities already exist. The AXIS Healthcare program is a coalition of a health plan, the Minnesota Department of Human Services, providers, and the disability community. The program would not be possible without the active involvement of each party. For more information, visit their website at www.axishealth.com.

Another program, the Region 10 Quality Assurance Commission in southeast Minnesota, was designed to assure that health and supportive services are more responsive to the needs and values of persons with developmental disabilities. This program relies heavily on consumer and family involvement. More information is also available on their website at www.mn-voice.org/index.php.

The current push for change in health and supportive care programs in the public sector, driven primarily by fiscal constraints, provides an opportunity for positive change. Despite the differences between persons with disabilities and clinicians, there is significant agreement between these two groups on the outline of an improved health care system for persons with disabilities. There is less agreement on how to move towards such a system. The information presented in this article will hopefully provide suggestions and steps for moving in the right direction.