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Introduction
Approximately 56.7 million persons (18.7%) in the United
States live with one or more communicative, mental, or
physical disabilities (1). Disability occurs when a person’s
environment does not accommodate their functional ability
(2). Persons with disabilities are at higher risk for poor health
(3–9). Evidence indicates that approximately half of all health
care expenditures can be accounted for by the 15%–20% of the
population who have a disability (10). However, persons with
disabilities often have not been included in health promotion
research or programs (6,11,12). Disability advocates and those
studying disability and health have demonstrated that, among
other factors, improved self-management skills among persons
with disabilities can lead to improved health and wellness and
improved ability to advocate for structural changes, which
can improve their access to quality health care in the United
States (12–14).
The definition and operationalization of disability is the
subject of ongoing discussion (15,16), which has helped to
clarify and distinguish disability status from health outcomes
(11,17,18). The International Classification of Functioning,
Disability, and Health combines medical and social models to
highlight the interaction of function and environment in the
creation of disability (2). This framework for understanding
disability presumes that disability and related health disparities
can be improved through improved physical and social
functioning (e.g., assistive technology, physical therapy,
peer support, and employment) and through modifications
that make the environment accessible to persons regardless
of functional ability (e.g., accessible buildings, information
technology, and social policy) (19,20).
A growing body of literature indicates that persons with
disabilities experience significant health disparities including
poorer overall health and more chronic conditions (6,21), some
of which have been referred to as secondary conditions (13,22).
Secondary conditions are health conditions that are more
frequent among persons who have disabilities than among those
without disabilities. Various studies have shown that persons
with disabilities frequently have to manage multiple secondary
conditions that might further limit activities and participation,
stress health-promoting routines, and lead to acute health care
episodes, including emergency care visits and hospitalizations
(5,23–25). In 2010, approximately five times more persons with
disability reported fair or poor health compared with persons
Living Well with a Disability, a Self-Management Program
Craig Ravesloot, PhD1
Tom Seekins, PhD1
Meg Traci, PhD1
Tracy Boehm, MPH1
Glen White, PhD2
Mary Helen Witten, MPH, MSW3
Mike Mayer4
Jude Monson4
1University of Montana, Missoula, Montana
2The University of Kansas, Lawrence, Kansas
3Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia
4Summit Independent Living Center, Missoula, Montana
Corresponding author: Craig Ravesloot, University of Montana. Telephone: 406-243-2992; E-mail: craig.ravesloot@mso.umt.edu.
Summary
Approximately 56.7 million persons in the United States have functional impairments that can lead to disability. As a group, persons with
disabilities show disparities in measures of overall health when compared with the general population. Much of this can be attributed to
secondary conditions rather than to the impairment itself. Persons with disabilities can prevent and manage many of the conditions that
contribute to these disparities. The Living Well with a Disability program was developed to support persons with disabilities to manage
their health. The curriculum helps participants achieve early success in self-management of quality-of-life goals to build confidence for
making health behavior changes; it includes 11 chapters that facilitators use to conduct an orientation session and 10 weekly, 2-hour
sessions. The program has been implemented by 279 community-based agencies in 46 states. On the basis of the data from the field trial,
these community applications have served approximately 8,900 persons since 1995, resulting in an estimated savings of $6.4–$28.8
million for health care payers. Persons with disabilities have unique needs that can be addressed through multiple levels of intervention
to reduce health disparities. The Living Well with a Disability program is a promising intervention that has demonstrated improvements
in health-related quality of life and health care use.
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without disability (39.4% versus 8.6%) (26). Furthermore,
persons with disability reported 10.2 days of poor physical health
in the past 30 days, whereas persons without disability reported
1.8 days of poor physical health (26).
Health disparities have led to a growing interest in public
health interventions that can have far-reaching effects and
that can make healthy behavior easier and more likely among
diverse populations (27). For persons with disabilities, multiple
levels of intervention are needed to address environmental,
health systems, and individual behavior determinants of
health (6). Many health problems experienced by persons with
disabilities can be prevented and managed by health education
interventions that target a person’s ability to self-manage chronic
disease risk and overall health status (11,14,28). Significant
improvements in health status following implementation of
health promotion programs have been reported for persons
with spinal injury (29), amputation (30), stroke (31), multiple
sclerosis (32), arthritis (33), and intellectual and developmental
disabilities (34,35). All of these studies focused on subsets of
the population with disabilities defined by a single specific
medical condition; few have investigated effects among diverse
populations with disabilities. To address this gap, the Living
Well with a Disability program was developed in partnership
with the national network of Centers for Independent Living
(CILs) as a self-management program intended to support
healthy living among persons with mobility impairments
irrespective of their medical condition.
CDC’s Office of Minority Health and Health Equity selected
the intervention analysis and discussion that follows to provide
an example of a program that might be effective in reducing
disability-related disparities in the United States. Criteria for
selecting this program are described in the Background and
Rationale for this supplement (36).
Methods
Intervention Methods
Living Well with a Disability was developed to address self-
management needs of persons with mobility impairments. A
community-based participatory research (CBPR) approach
was used to shape the curriculum content based on participant
input and epidemiological research (37–40). Input from this
process confirmed that adults with mobility impairments
experienced a wide range of secondary conditions (e.g., pain,
depression, and obesity) and social conditions that limited
their ability to participate in desired events and activities. These
findings led to discussions on the ecological context of persons
with mobility impairments to design suitable interventions.
Persons in the general population can learn skills to prevent
and manage chronic conditions (41,42). Because strategies for
effectively delivering health promotion content to persons with
functional impairments were unknown, CBPR methods were
used to help specify the nature of the problem more accurately
and to design an inclusive intervention.
Federally funded CILs are organizations that meet criteria
for having access to the target population and organizational
features that make these centers capable of meeting
intervention objectives (43,44). CILs are nonresidential
resource and advocacy centers that support the needs of
persons with disabilities to help them live independently in the
community. They are organized into a national network with
approximately 600 offices that share 1) a common philosophy
about the nature of disability consistent with the social model
of disability; 2) a consistent approach to helping persons live
independently that focuses on personal responsibility, choice,
and control; and 3) a core set of services including information
and referral provisions, peer support, independent living skill
development, and personal and systems advocacy to increase
the accessibility of community environments (45). Before
development of the Living Well with a Disability program,
health promotion was not a service commonly provided by
CILs (45).
Previous research suggested that an effective self-management
strategy should incorporate life skills that facilitate the
development of meaningful life activities to provide a context
for addressing health behavior change (46). This strategy
encourages persons with disabilities to set quality-of-life goals
that include health behavior changes as essential objectives.
The Living Well with a Disability curriculum is geared to
helping participants achieve early success in self-management
of quality-of-life goals that build confidence and motivation for
making health behavior changes (47). The program includes
11 chapters that facilitators use to conduct an orientation
session and 10 weekly, 2-hour sessions. The first chapter, an
orientation session, addresses the recruitment and retention
challenges identified by community sites (and identified in
research as barriers to program participation experienced by
persons with disabilities). In this session, participants explore
potential obstacles to attendance (e.g., fear and anxiety when
going to a venue that might not accommodate their needs,
such as having an accessible restroom), examine the potential
benefits of participating in the program, and consider strategies
they might use to overcome barriers. The next four sessions
encourage peer support through a supportive solution-
focused group process; they help participants develop hope
that they can achieve a more meaningful and healthy life
while addressing the early challenges of pursuing new goals.
These sessions build analysis and problem-solving skills (e.g.,
frustration management and self-monitoring for depression to
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identify needs for clinical intervention). The last six sessions
focus on specific self-management skills for improving health
status, including 1) strategies for effective communication with
health care providers, 2) strategies for information acquisition
and use, 3) strategies for increasing activity (through six levels
from sedentary to recommended levels of exercise), 4) strategies
for improving diet (based on U.S. Department of Agriculture
guidelines), 5) strategies for advocating for both personal
and health care systems improvements, and 6) cognitive and
behavioral strategies for maintaining health behavior changes
over time (Table 1). Additional program information is
available at www.livingandworkingwell.org.
Data Collection and Analysis
The Living Well with a Disability program has been
assessed in several published studies that are summarized
in this report. No new findings are presented. The program
was originally evaluated in a pilot study in 1992 (46) and
revised before evaluation (1998–1999) using a randomized,
quasiexperimental, staggered baseline design that included a
convenience sample of 246 CIL consumers from nine sites
geographically distributed across eight states in the United
States (California, Kansas, Mississippi, Montana, Missouri,
New Hampshire, New York, and Texas) (48,49). Participant
demographics (e.g., mean age: 45 years; range: 18–85 years;
82.4% white; 64.2% women) were representative of the U.S.
population of persons with mobility impairments. Participants
had been living with an impairment for an average of 17.5 years
(standard deviation [SD] = 15.7) (49).
Program effectiveness was evaluated by collecting data on
secondary conditions (23), symptom days, life satisfaction
(50), health care use as reflected by costs (e.g., primary care
and emergency department visits, outpatient surgery, and
hospital days), and healthy lifestyle (Table 2) (51). Data were
collected 2 months prior, immediately before the intervention,
immediately after the intervention, and at 2 months, 4
months, and 12 months after the intervention. Because of the
staggered baseline design that requires implementation of the
intervention with all participants, outcome data were analyzed
by using separate between-subject (i.e., logistic regression) and
within-subject procedures (i.e., repeated measures analysis of
variance). The level of statistical significance for all analyses
conducted was p<0.05.
Results
Between-subject results indicated that participants in the
intervention group were significantly more likely than those
in the control group to be below the median for secondary
conditions (adjusted odds ratio [AOR]: 3.05; 95% confidence
interval [CI]: 1.33–7.01), symptom days (AOR: 1.96; 95% CI:
0.91–4.26) and health care use (AOR: 1.94; 95% CI: 1.03–
3.67) after adjusting for demographics and preintervention
status with respect to the median of each variable (49).
The within-subject analysis indicated that observed changes
in all outcome measures occurred during the intervention
period and were maintained up to 12 months for secondary
conditions, healthy lifestyle, and life satisfaction. Symptom
days returned to baseline at 12 months, and health care costs
returned to baseline at 2 months (Table 2). No change was
observed over the extended baseline period (i.e., period without
treatment prior to the intervention) on any of the outcomes
measured, indicating that observed differences resulted from
the Living Well with a Disability program rather than from
instrumentation effects associated with the measurement
procedures (48).
Discussion
In addition to person-level outcomes, a cost analysis of
the Living Well with a Disability (Living Well) program was
conducted. The cost analysis used the payer perspective, which
reflects the costs incurred by health insurers and other payers
(52). Self-reported health care utilization data were used to
compute health care unit costs incurred by study participants
at each measurement period (53). Overall, cost outcomes for
the entire sample indicated a 6-month cost savings of $3,227.
To examine outcomes for participants without high health care
expenditures (i.e., more than three standard deviations above
the mean), a sample trimmed to include only persons with
seven or fewer hospital nights during any measurement period
was also reported. The 6-month health care cost savings for this
sample was $723. Overall, the Living Well program recovered
all costs of program implementation, including in-person
facilitator training and data collection ($596 per participant),
within 4 months of program delivery for both the complete
and the trimmed sample populations (53).
By May 2015, the Living Well program had been
implemented by 279 community-based agencies in 46 states
to approximately 8,900 persons with disabilities. On the basis
of the 6-month cost savings observed in the field trial (i.e.,
$723 and $3,227), these community applications are estimated
to have saved $6.4–$28.8 million, which would have been
incurred since February 1995 by health care payers without
program implementation.
Several factors might affect dissemination of this program.
Historically, health promotion has not been a mandated service
in the U.S. health care system. In addition, many organizations,
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64 MMWR / February 12, 2016 / Vol. 65 / No. 1 US Department of Health and Human Services/Centers for Disease Control and Prevention
such as CILs, that serve persons with mobility limitations
struggle to meet their core mission across a large geographical
area on small budgets. When they add a service, such as the
Living Well program, they do so with limited funds. For other
organizations, the functional approach adopted by the Living
Well program might be unfamiliar and substantially different
from the medical model of disability (2), which also might
limit their ability to implement it.
The Living Well program improved the health-related quality
of life and reduced health care utilization in a randomized
controlled trial. Some health-status and health-related,
quality-of-life improvements were still evident 12 months
after the intervention. Scalability of the program is possible
because it has been tested in geographically diverse parts of the
United States and implemented across various organizations,
including CILs, Aging and Disability Resource Centers,
outpatient rehabilitation centers, and interdisciplinary wellness
centers. In addition, three payers, L.A. Care Health Plan,
Inland Empire Health Plan, and the Montana 1915(c) Home
and Community-Based Waiver Medicaid programs, have
provided reimbursement to CILs for delivering the program.
The facilitator and client workbooks are available in English,
Spanish, and Korean.
The Living Well program was designed for compatibility with
implementation in rural areas that often lack health promotion
resources. Approximately 7.24 million noninstitutionalized
persons with disabilities live in rural areas of the United
States (54), and CILs have conducted Living Well trainings
successfully even in remote counties and frontier counties,
which have fewer than six persons per square mile. The
combination of a distance training program with a workbook
focused intervention has facilitated availability of the Living
Well program in areas where limited resources exist for persons
with disabilities.
The Living Well program has had a long history of
development with funding from various sources including
TABLE 1. Living Well with a Disability curriculum content, objectives, and rationale for intervention components
Chapter Primary objective Rationale
Orientation Provides introductory information about the program, so
persons can learn about it before committing to attend
Persons are reluctant to commit to a class and need information
to make an informed choice.
Goal setting Introduces the process for identifying and setting meaningful
quality-of-life goals; develops skills for writing goal statements
Setting meaningful quality-of-life goals provides motivation for
participants to improve their health and to achieve their goals.
Problem solving Teaches skills in identifying problems and generating solutions;
helps participants anticipate and plan for problems while
working toward goals
Problem-solving skills help participants anticipate problems and
identify solutions in support of making progress towards goals.
Healthy reactions Teaches cognitive-behavioral skills and encourages peer
support for dealing with frustration and setbacks as
participants work toward goals
Learning to be optimistic and develop healthy reactions to
setbacks supports goal-directed activity.
Beating the blues Provides an overview of discouragement and depression and
offers additional resources for seeking help with prevention
and management
Depressed mood can occur as a result of frustration and
discouragement and disrupts goal-directed activity.
Healthy communication Teaches the importance of clear communication with a focus on
developing skills for communicating health issues with
physicians and service providers
Goal-directed activity often depends on the help and support of
others in the community. Communication skills promote
cooperation in support of goal achievement.
Information seeking Provides resources for identifying needed health information,
evaluating the reliability of health information sources, and
effectively using the information once found
Learning to find and apply reliable information specific to the
individual needs of the participants is an important skill for
improving health in support of goal achievement.
Physical activity Presents information on and provides guidelines for increasing
healthy activity and motivates participants to make simple
changes to incorporate more physical activity into daily life
Secondary health conditions can be reduced or prevented
through healthy physical activity.
Eating well Provides information on nutrition and nutrition resources and
presents strategies for monitoring eating habits and
increasing the intake of healthy foods while limiting the intake
of unhealthy foods
Secondary conditions can be reduced or prevented through
improvements in nutrition.
Advocacy Provides information and resources for self and systems
advocacy and draws upon the skills learned in previous
chapters to support participants’ advocating for and meeting
their needs
Learning the steps and skills of self and systems advocacy can
solve problems that impede goal-directed activity (e.g.,
problems with access to exercise facilities).
Maintenance Offers information and strategies for monitoring progress
toward goals and maintaining health behavior changes
Health-behavior change must be supported with strategies for
maintenance.
Sources: Adapted from Ravesloot C, Seekins T, Young Q-R. Health promotion for people with chronic illness and physical disabilities: the connection between health
psychology and disability prevention. Clin Psychol Psychother 1998;5:76–85; Ravesloot C, Ruggiero C, Ipsen C, et al. Disability and health behavior change. Disabil
Health J 2011;4:19–23.
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the CDC. In September 2015, funding was received from
National Institute on Disability, Independent Living, and
Rehabilitation Research to develop and evaluate a multimedia
version of the Living Well program that will update delivery
methods, improve fidelity of program implementation in the
field, and extend programmatic reach. Additional program
information is available at http://rtc.ruralinstitute.umt.edu/
health-wellness/motivation-for-self-management.
Limitations
The findings in this report are subject to at least two limitations.
First, self-reported outcomes and convenience sampling can
produce biases not accounted for in the experimental design.
Second, the results are not generalizable beyond the population
of persons with disability using CIL services.
Conclusion
Persons with disabilities have unique needs that can be
addressed through multiple levels of intervention to reduce
health disparities (6). CDC has responded to these needs
by developing a novel effective intervention that has already
realized a return on investment through its many applications
at multiple sites. Because of the aging of the U.S. population,
this intervention might generate greater returns as the need
intensifies for interventions that address health disparities
experienced by persons with disabilities.
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