Rural Disability and Rehabilitation Research Progress Report #3

Relatively little is known about the incidence and prevalence of injuries and other secondary conditions experienced by adults with developmental disabilities.

Understanding the risk factors for secondary conditions and strategies for their prevention is important to people with disabilities, rehabilitation providers, and public health agencies. Many secondary condition prevention strategies require direct involvement of the individual with a disability. However, the nature of some disabling conditions requires help from an intermediary facilitator, frequently known as a "Personal Care Attendant" (PCA) or a "Personal Assistant" (PA).

Montana's Developmental Disabilities Planning and Advisory Council (DDPAC) and the Office on Disability and Health of the Centers for Disease Control, supported RTC: Rural's development of a secondary conditions surveillance instrument. PAs completed this instrument, which assessed the secondary conditions of 266 adult Montanans with developmental disabilities and found that these individuals experienced an average of 9.7 secondary conditions annually. To calculate inter-observer reliability, a second monitor also completed the instrument for many of the participants. Using a conservative point-by-point method of calculation, agreement averaged 89% and suggested that PAs serving adults with developmental disabilities can accurately report the health status of their consumers.

A PA may be a consumer's friend, family member, a paid employee, or a service provider paid by a third party. Their relationship is an important, complex, human connection. However, personal assistance focuses on instrumental purposes, and PAs also become part of the disabled person's environment as an extension of, or an agent for, the individual. Preventing and managing secondary conditions requires that the PA understand the individual's goals, his or her preferred strategies for reaching those goals and expectations for outcomes. The PA also needs the knowledge, skills and resources to arrange programs consistent with the individual's interests and abilities.

Salaries are notoriously low for those who provide personal assistance to adults with developmental disabilities living in group homes and other supported living arrangements. Staff turnover is high and is a potential risk factor for injuries to both consumers and PAs ­ injuries which can be expensive, reduce consumers' independence and quality of life, affect PAs' ability to work, and increase the cost of Workers' Compensation coverage for agencies. If so, salary increases that decrease staff turnover may be cost effective.

Analyses of pilot study data show that, in the past two years, 66% of our sample's 266 adults with developmental disabilities had a change of PA and 17% had changed case managers. Generally, one might expect that new PAs are less likely to be familiar with an individual's lifestyle, prevention strategies, and way of communicating, and that consumers experiencing such a change might have different outcomes. Our analyses did reveal that individuals who experienced a change in PA had significantly more secondary conditions that limited participation, more emergency room visits and more hospitalization days during the past year than did individuals not changing PAs. Furthermore, individuals who experienced a change in PA had significantly more injury-related secondary conditions than did individuals without a change in PA (see Table 1). Interestingly, changes in case manager had no significant impact on health-related measures.

Consumers who have a change in PA and those who did not may also differ in the types of care they receive during hospital, emergency room (ER), and physician visits. For example, a new PA, unfamiliar with a consumer's mode of communication, might consult a physician for any suspected pain or ailment. These services might be minimal and less-expensive than those received by consumers with more experienced PAs. In another scenario, a new PA may lack skills for supporting a consumer's preventive lifestyle choices, leading to a need for more-costly acute care. We need to investigate further to fully understand how these two consumer groups (those experiencing or not experiencing a change in PA) differ in their health concerns and types of care. How is PA turnover affected by, or contributing to, these issues?

Assuming, however, that types and costs of care are distributed equally across the two groups of consumers, we looked at average costs of care (over all diagnosis-related groups) for a one-day inpatient hospital stay, for one ER visit, and for one physician visit (based on 1997-98 Montana Medicaid data). Translated into dollars, the differences between average costs for consumers who have experienced a change in PA and those who did not are:

Average Cost of Hospital Stays per Year

Change in PA...........................$900.80
Same PA....................................$140.98

Average Cost of ER Visits per Year

Change in PA............................$73.81
Same PA.....................................$16.77

Average Cost of Physician Visits per Year

Change in PA............................$327.29
Same PA.....................................$206.44

Additional future data should clarify how higher injury rates in consumers experiencing a change in PA contribute to the greater use of these health care resources. Injuries can drain community-based service agency budgets and deflect their resources toward Workers' Compensation costs. Knowing the prevalence of care-related injuries and the importance of injury risk factors (such as PA turnover), can help us design injury intervention strategies and reduce costs.

Table 1:Prevalence Rate (PR) and Average Severity of Care-related Injuries Reported by Adults with Developmental Disabilities
Description

*Severity was rated on a 0-3 functional limitation scale. Zero indicated no limitation due to injury and a three indicated significant or chronic limitation due to an injury.

Conclusion:

Preventing secondary conditions in people with significant disabilities helps them lead healthier, more independent, more integrated lives and is a new tool for improving programs. PA retention strategies, such as career ladders, training opportunities, and higher salaries could reduce the incidence and severity of secondary conditions and could potentially be cost-effective.

The Research and Training Center on Rural Rehabilitation Services conducts applied research that builds upon the strengths of real individuals and communities to solve life's daily problems.  This series of reports makes research results available as soon as is practical.  Please note that data are preliminary and must be interpreted with caution.  The major limitations are reported.  Please contact project staff to more fully discuss issues presented.

This report is available in Braille, large print and ASCII DOS text formats.

For more information, contact:

Health Promotion Project for Adults with Developmental Disabilities
Donna Bainbridge,
Project Director
Research and Training Center on Disability in Rural Communities
The University of Montana Rural Institute: A Center for 
Excellence in Disability Education, Research and Services
52 Corbin Hall, The University of Montana
Missoula, MT 59812-7056
888-268-2743 (toll-free) or 406-243-5647 (V)
406-243-4200 TTY
email the Rural Institute

This research is supported by Office on Disability & Health, Centers for Disease Control  grant no. R04/CCR814162-01, with additional support from DDPAC and the National Institute on Disability and Rehabilitation Research.

Opinions are those of the authors and do not necessarily reflect those of the funding agencies.
© RTC: Rural, 1999

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