Case Study 2
Disabilities
State governments face many issues related to assessing the safety and efficacy of the programs that they provide and fund. Also, different constituent groups outside of government monitor events occurring in these programs and advocate for change where they see problems. These groups communicate their concerns to their government in many ways including formal letters as well as verbal contact. The state government must evaluate these claims in regard to their accuracy and develop a plan to approach addressing the findings. This case study provides the opportunity to apply principles of public health to this scenario.
You are the director of the Division of Epidemiology for a large state. In your state the Division of Epidemiology provides statistical support to all of the program offices in the Department of Health and Welfare. This includes the Office of Programs for People with Disabilities (OPPD), which provides services and supports for people with developmental disabilities, including intellectual disabilities (formerly called mental retardation), cerebral palsy and other physical disabilities, and autism spectrum disorders.
The director of the OPPD comes to you with the information that the advocates for the OPPD are concerned that people living in residential settings, which are licensed by the state and run by private provider entities, use emergency departments and are admitted to the hospital more than people without disabilities living in the same geographical areas. These residential settings generally consist of three or four individuals with disabilities living in the same home with paid staff members who work in the home and provide their care. These homes are houses or apartments located in communities. The advocates maintain that this is because the staff members working with these individuals have little knowledge about health and medical conditions, and they have asked that the director of the OPPD address these concerns. The director is asking you for help in analyzing and addressing them. Outline your recommendations for analyzing the accuracy of these concerns, using the following questions to guide your response:
1. What types of data would you look at in order to evaluate this concern?
2. What demographic characteristics of this population might be different from those of the general population and require adjusting the data?
3. What health characteristics and medical conditions might need to be considered when analyzing this information?
Your analysis of the data reveals that indeed this population has a higher rate of use of both emergency departments and hospital care. In addition, this care is related to conditions common to the general population like congestive heart failure, diabetes, and respiratory illnesses as well as those more common to the population of people with developmental disabilities, such as seizures and problems requiring orthopedic surgery. The literature shows that people with greater health knowledge about particular medical conditions are more likely to get better health care and have better control of their disease condition. You present this information to the director of the OPPD and suggest that increasing the health knowledge of the people responsible for the day-to-day support of these individuals with disabilities might result in better care and control of their chronic diseases. Describe some ways to provide health education to this population.
The director of the OPPD took your suggestions and created a group of units across the state to provide health education to the staff working with people with disabilities in residential settings. These units assess the health and medical conditions of the population of people living in their area and then develop educational activities to teach the staff members how to better manage common diseases like congestive heart failure, diabetes, and chronic lung disease. Some of the classes include specific information about a disease, whereas others address some of the barriers to better management and provide training in how to give medication consistently. The units have nurses that gather health data from a random sample of people living in residential settings. They have identified that of the people in residential settings with a diagnosis of high blood pressure who are on medication, about 84 percent of them have a normal blood pressure compared with 28 percent of the general population who are not in residential settings (Centers for Disease Control and Prevention, 1999a; Morrow and Breen, 2001). One of the reasons for this difference is probably individuals' level of compliance with taking prescribed medication, given that staff members giving medication in the licensed residential settings document each dose of medication administered as taught to them in a course about medication administration. Thus, health knowledge can have a significant impact on chronic disease management.
You are the director of the Division of Epidemiology for a large state. In your state the Division of Epidemiology provides statistical support to all of the program offices in the Department of Health and Welfare. This includes the Office of Programs for People with Disabilities (OPPD), which provides services and supports for people with developmental disabilities, including intellectual disabilities (formerly called mental retardation), cerebral palsy and other physical disabilities, and autism spectrum disorders.
The director of the OPPD comes to you with the information that the advocates for the OPPD are concerned that people living in residential settings, which are licensed by the state and run by private provider entities, use emergency departments and are admitted to the hospital more than people without disabilities living in the same geographical areas. These residential settings generally consist of three or four individuals with disabilities living in the same home with paid staff members who work in the home and provide their care. These homes are houses or apartments located in communities. The advocates maintain that this is because the staff members working with these individuals have little knowledge about health and medical conditions, and they have asked that the director of the OPPD address these concerns. The director is asking you for help in analyzing and addressing them. Outline your recommendations for analyzing the accuracy of these concerns, using the following questions to guide your response:
1. What types of data would you look at in order to evaluate this concern?
- Discussion should include evaluation of hospitalization and emergency department use for both this population and the general population in order to make a comparison between the two. Possible sources of information include Behavioral Risk Factor Surveillance System (RFSS) data, data from the National Center for Health Statistics, such state-specific sources as unusual incident reporting systems common to many state developmental disability offices, hospitalization data reported to the state, claims data from Medical Assistance or Medicare, and so on.
2. What demographic characteristics of this population might be different from those of the general population and require adjusting the data?
- Demographic issues include age differences in sample populations, as many developmental disability agencies only serve adults in residential settings, and also because a number of individuals with genetic conditions die as infants or young children as a consequence of their disability. Gender is important because many developmental disorders including intellectual disabilities and autism spectrum disorders are more prevalent in males than females. Race or ethnicity may be important if those characteristics differ between the residential and general populations (for example, there may be cultural factors that would predict that the racial makeup of the residential population would not be representative of that of the state as a whole if a particular racial or ethnic group tended not to use residential settings). Urban versus rural populations could also be considered.
3. What health characteristics and medical conditions might need to be considered when analyzing this information?
- Some medical conditions are more prevalent in a population of people with developmental disabilities. These include hypothyroidism, seizure disorders, congenital heart disease with congestive heart failure, and chronic respiratory disease.
- People with motor disorders like cerebral palsy or spina bifida tend to have more surgical procedures related to their developmental disability. For example, individuals with spina bifida often have hydrocephalus and require shunts. These shunts may fail, thus necessitating replacement. People with cerebral palsy develop contractures of the muscles and need to have surgery to release them.
- People with disabilities also have the same chronic medical conditions that are present in the general population—including diabetes, heart disease, and so on.
Your analysis of the data reveals that indeed this population has a higher rate of use of both emergency departments and hospital care. In addition, this care is related to conditions common to the general population like congestive heart failure, diabetes, and respiratory illnesses as well as those more common to the population of people with developmental disabilities, such as seizures and problems requiring orthopedic surgery. The literature shows that people with greater health knowledge about particular medical conditions are more likely to get better health care and have better control of their disease condition. You present this information to the director of the OPPD and suggest that increasing the health knowledge of the people responsible for the day-to-day support of these individuals with disabilities might result in better care and control of their chronic diseases. Describe some ways to provide health education to this population.
- Students should provide some thoughts about how to effectively identify the appropriate topics and develop education materials, and describe how to get this type of knowledge to this population. Ideas might address the following:
- Strategies to identify appropriate topics based on the information gathered about health conditions
- Strategies to develop training materials, including such issues as who will develop the materials (internal departmental staff members or a contractor), what separate groups will be created, who will prepare materials for use, and what formats would be most effective for those materials
- Methods of providing the information, including face-to-face training, electronic training, train-the-trainer modules, and so on
- The use of focus groups and other similar entities to best identify how to get the information to people in this group
- Ways to assess the impact of the provision of this information
- Ways to make the educational materials available to people, taking into account appropriate reading level and so on
The director of the OPPD took your suggestions and created a group of units across the state to provide health education to the staff working with people with disabilities in residential settings. These units assess the health and medical conditions of the population of people living in their area and then develop educational activities to teach the staff members how to better manage common diseases like congestive heart failure, diabetes, and chronic lung disease. Some of the classes include specific information about a disease, whereas others address some of the barriers to better management and provide training in how to give medication consistently. The units have nurses that gather health data from a random sample of people living in residential settings. They have identified that of the people in residential settings with a diagnosis of high blood pressure who are on medication, about 84 percent of them have a normal blood pressure compared with 28 percent of the general population who are not in residential settings (Centers for Disease Control and Prevention, 1999a; Morrow and Breen, 2001). One of the reasons for this difference is probably individuals' level of compliance with taking prescribed medication, given that staff members giving medication in the licensed residential settings document each dose of medication administered as taught to them in a course about medication administration. Thus, health knowledge can have a significant impact on chronic disease management.
1. What types of data would you look at in order to evaluate this concern?
2. What demographic characteristics of this population might be different from those of the general population and require adjusting the data?
3. What health characteristics and medical conditions might need to be considered when analyzing this information?