Of the data sources listed in Appendix 1, there are four that provided the inputs to allow us to construct our incidence, prevalence, and continuance factors that are key to the Model. We describe each of these data sources in greater detail below.
2004 Survey of Income and Program Participation (SIPP), Wave 5
- Use in the Avalere LTC Model: SIPP provided estimates of prevalence of disability in the community setting, as well as Medicaid coverage and amount of paid help
- Source: US Census Bureau
- Design: Annual survey of 14,000 to 36,700 households
- Demographics: U.S. civilian noninstitutionalized population over the age of 15
- Measuring disability: To construct our estimates of severe disability, we relied on the following data in SIPP:
- Count of activities of daily living (ADL) that the person needs the help of another person. ADLs include transfer, bathing, dressing, walking, eating, and toileting.
- We included an individual under cognitive impairment if they were not included under the ADL definition and SIPP indicated they had “Alzheimer’s disease or any other serious problem with confusion or forgetfulness”.
- We included an individual under mental retardation/development disability if they were not included under the ADL definition or the cognitive impairment definition and SIPP indicated the person had a mental retardation or a developmental disability such as autism or cerebral palsy.
2004 National Nursing Home Survey (NNHS)
- Use in the Avalere LTC Model: NNHS provided estimates of prevalence of disability in the nursing home setting
- Source: US Centers for Disease Control
- Design: Survey conducted every 5 years of 1,174 nationally representative nursing homes
- Demographics: All current residents of US nursing homes
- Measuring disability: To construct our estimates of severe disability, we relied on the following data in NNHS:
- Count of activities of daily living (ADL) that the person needs limited, extensive, or total assistance. ADLs include transfer, bathing, dressing, walking, eating, and toileting.
- We included an individual under cognitive impairment if they were not included under the ADL definition and NNHS indicated the person was either in specialty unit within the nursing home dedicated to Alzheimer’s disease or dementia or if the person had an impaired decision making ability.
- We included an individual under mental retardation/development disability if they were not included under the ADL definition or the cognitive impairment definition and NNHS indicated the person was either directly admitted to the nursing home from an intermediate care facility for the mentally retarded (ICF/MR) or the person was in a specialty unit within the nursing home dedicated to MR/DD.
Society of Actuaries (SOA) Individual Disability Experience Commission (IDEC)
- Use in the Avalere LTC Model: We used the IDEC tables to construct disability continuance estimates for the under-65 population
- Source: Society of Actuaries
- Design: Claim incidence and termination study of twelve individual disability income carriers. Claim experience used in analysis covers 1990-1999 time period.
- Demographics: Covered lives from twelve long-term care insurance carriers, representing approximately 64% of the US individual disability income market in 1995.
- Notes on IDEC: The IDEC tables are presented in spreadsheet format, which allow users to select key variables concerning the population in question, including age, gender, occupation, type and nature of disability, and any elimination period. Once a user selects these options, the Model provides estimated continuance rates until the person reaches the age of 65. We gathered these continuance rates for each age between 18 and 65 and each gender, allowing for any type of severe disability, requiring a 90-day elimination period (to exclude any short-term disabilities), and setting occupation to a equal mix of class 1 (white collar, professional, executive occupation) and class 2 (supervisory and other skilled clerical and skilled technical people). We then created a single continuance estimate for each age by weighting the output by the overall population.
National Long-Term Care Survey (NLTCS)
- Use in the Avalere LTC Model: We used transition matrices prepared by Eric Stallard, Robert Yee, and Ken Manton using different waves of the NLTCS to construct disability continuance estimates for the over-65 population
- Source: NLTCS is administered by the US Census Bureau and published by the National Institute of Aging and Duke University
- Design: The NLTCS is a longitudinal survey that tracks the same individuals every 5 years to determine health and functional status, health expenditures, Medicare service use, and the availability of personal, family and community resources for care giving.
- Demographics: NLTCS surveys a sample of over 35,000 US residents over the age of 65. As individuals in any survey drop from the sample due to mortality, NLTCS replaces with new individuals.
- Notes on NLTCS: Stallard, Yee and Manton have prepared a series of analyses using the subsequent waves of the NLTCS to estimate disability incidence, prevalence, and continuance. The continuance estimates are largely presented by the authors as transition matrices, which we have used in the Model to construct overall continuance estimates.
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