Care vs. Empowerment
by Jack Priester
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.
