Workshop on Disability in America A New Look: Summary and Background Papers (2006) / Chapter Skim
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Summary of Workshop Presentations and Discussions
Summary of Workshop Presentations and Discussions
Pages 4-38
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The first of the afternoon panels considered disability issues over the human life span, specifically, risk factors for disability late in life and transitions or transfers in care for adolescents and young adults. The other two afternoon panels provided perspectives on the nature and the prevention of secondary health conditions.
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. The step backward with ICF was the blurring of the conceptual distinctions between activity and participation (and between activity limitations and participation restrictions)
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to the ICF model as recommended by the 1997 IOM report; • provide more theoretical and empirical specificity about the nature and complexity of environmental factors as they affect participation; • identify and assess personal factors, including psychological and behavioral characteristics, that affect activity and participation; • refine the graphic representation of the model so it would better help people to understand and use the model's concepts and relationships; • develop a research strategy, including better measures and data resources, to test the model and its complex set of interrelations; and • design and test interventions that are consistent with the model to assess whether they improve the lives of people with disabilities. In the second presentation, Dr.
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Julie Keysor tackled the question raised by both earlier speakers: how does the environment influence social participation and disability? In the absence of data on participation and participation restrictions, she focused on conceptual work and research related to mobility limitations and the environment.
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Other self-report instruments, for example, the Measure of the Quality of the Environment developed by Fougeyrollas and the Quebec group, add a focus on environmental facilitators as well as barriers. Based on her search of the research literature from 1991 to 2005 related to rehabilitation, stroke, spinal-cord injury, and arthritis, Dr.
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For example, people with traumatic brain injury have cited family attitudes as an important barrier. A final
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Some have predicted increases in late-life morbidity and disability, some have predicted decreases, and others have hypothesized an increase in chronic conditions but a decrease in their progression to disability in late life.
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To the contrary, based on self-reports, the prevalence of many chronic diseases has increased, even as their disabling effects have declined. This pattern could reflect improved medical diagnosis and treatments, but studies thus far have yielded little insight.
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Although 60-year-olds with chronic disease showed decreased disability overall, the increase in obesity was a major countervailing influence in this group. Beyond the increased prevalence of obesity in the two younger age groups, other highlights were as follows: • for 30-year-olds, increased disability related to heart disease and the combination of heart disease and obesity; • for 45-year-olds, increased disability among those with hyperten
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and decreases in disability related to many chronic conditions but increased disability because of COPD and stroke combined with hypertension. In concluding, Dr.
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Based on one of those tools, the 1994–1995 NHIS Disability Supplement, 14.8 to 18.0 percent of children were identified as having special health care needs and about 50 percent of that group had functional limitations. The proportions of children affected increased with increases in age and poverty.
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Bhattacharya emphasized that successful steps to reduce the rates of obesity would have a very large effect on future disability rates and that reducing the prevalence of chronic diseases would also diminish disability.
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. By monitoring populations over time, it was possible to assess the developing incidence of mobility limitations and other problems and to identify chronic health conditions as risk factors for these problems.
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population to the youngest and from risk factors for disability to certain difficulties that children with disabilities or special needs may experience as they move from adolescence into adulthood and from pediatric to adult health care providers.
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He also cited the consensus statement by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians (2002) endorsing the provision of uninterrupted, high-quality, developmentally appropriate health care services to maximize individual functioning and support the transition of young people from pediatric to adult health care.
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He argued that we need youth leaders to advocate for an adult health care system that is more responsive to youth and young adults with special health care needs. Discussion The first question in the discussion focused on what the IOM committee should consider in terms of analysis and recommendations about making the transition to adult health care services work for children with disabilities or special health care needs.
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SECONDARY HEALTH CONDITIONS: PART I Presentations Dr. Margaret Turk led off the panel with an overview of secondary conditions.
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A secondary condition is directly related to a primary disabling condition; the primary condition is a risk factor for the secondary condition. An example for people with cerebral palsy is contractures.
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Sometimes, increased scientific knowledge leads to an understanding that what was thought to be an unrelated comorbidity is actually a related secondary condition. For example, spinal cord injury is now recognized as a risk factor for insulin-resistant diabetes.
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As they provide routine health care, medical professionals may not anticipate the early aging experienced by many people with disabling conditions such as cerebral palsy. Margaret Turk talked earlier about secondary conditions related to aging and living with disability.
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Rimmer and his colleagues covered the period from 1990 to 2005. For the literature search, key words included "exercise," "physical activity," "secondary conditions," and "disability," in addition to terms for specific disabling conditions, such as "multiple
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Among the important directions for research, one priority should be more efforts to conduct randomized controlled trials and longitudinal studies on exercise interventions for people with disabling conditions. Such studies will generate a stronger evidence base for guidelines and recommendations on exercise interventions for people with different disabling conditions.
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One situation is a catastrophic disability in an otherwise young and healthy person; that individual has a primary condition -- a medical diagnosis -- that is a risk factor for specific secondary conditions or diagnoses. In contrast is the situation in much geriatric care, in which the problem is general frailty rather than a clear, primary disabling condition and in which frailty-associated activity limitations are risk factors for further deterioration.
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She agreed that it is important to consider the role of pain, whether it is an inadequately treated aspect of a primary condition or an aspect of a related secondary condition. A participant then returned the discussion to the issue of exercise as an effective intervention in people's actual lives.
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More generally, bringing together what is known in the basic sciences with what is known in applied or clinical sciences and epidemiological sciences is important, and real opportunity exists in this area. One example involves research on the biology of muscle contractures among people with limited mobility, a secondary condition that is a major focus of clinical prevention and management efforts.
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Now the topic is firmly established in the field of spinal cord medicine. As in the broader population, heart disease and lung disease are common causes of mortality and morbidity for people with spinal cord injuries.
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Pressure ulcers are a tremendous source of morbidity in those with spinal cord injury and in the general population -- probably costing about $8 billion to $10 billion a year nationwide for all care provided for this condition. Again, much remains to be learned about the development of pressure ulcers; rates of ulcer healing; and the roles of nutrition, inflammatory, and endocrine factors.
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Data indicate that depression is more common in people with disabilities and, in some respects, is more serious in this group. Compared with the rates of depression among people with no disability, the rates of depression among those with post-polio syndrome, rheumatoid arthritis, cerebral palsy, spinal cord injury, or stroke have been reported to be higher.
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Dr. Tom Seekins made the final presentation, which covered secondary conditions among people with intellectual or developmental disabilities.
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The individual service plan directs the activities of personal assistants, who are critical environmental elements. Again, preliminary findings suggest that turnover and change involving assistants are risk factors for secondary conditions.
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The identification of coexisting or primary depression and the assessment of prevention and management needs in this context are important. Another question arose about the risk factors for depression as a secondary condition.
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One participant stated that the evidence base for understanding, preventing, and mitigating disabling conditions is getting stronger. She also cited a series of meetings that are being sponsored by the Agency for Healthcare Research and Quality and the Robert Wood Johnson Foundation to discuss alternative study designs to strengthen and promote research on these and other conditions.
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2004. Treatment of major depression in individuals with spinal cord injury.
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1986. Trends in activity-limiting chronic conditions among children.
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