Health and Function of Individuals with Intellectual and Developmental Disabilities: National Health Outcomes Indicators Program
The national health outcomes indicators project proposes a coordinated, multi-center secondary analysis program agenda under the direction of three leading researchers in population studies and I/DD: Drs. Glenn Fujiura and Sandra Magana of UIC and Dr. Susan Parish of Brandeis. The proposed research agenda is organized around the first ever I/DD-focused analysis of linked Medical Expenditure Panel Survey (MEPS) data with National Health Interview Survey (NHIS) spanning 16+ years, from 1996 to 2011. As described in greater detail in the literature review, this linkage is a powerful and innovative approach with several critical research implications:
- Using the diagnostic codes embedded in the NHIS, the extensive array of MEPs health services and service cost data can be employed in a targeted analysis of I/DD. Previous applications of the MEPS have focused on the heterogeneous grouping of subgroups of persons with “cognitive” impairments – for example, dementia, brain injury, among others in addition to I/DD).
- Pre- and post comparisons are possible with the linkage. MEPS is a “panel” survey, that is, interviews are conducted repeatedly over a two year period. Each MEPS sample in turn is linked to the previous year’s NHIS sample data (since MEPS samples are drawn from the prior year NHIS). Thus, pre-post comparisons between a NHIS defined grouping and MEPS services, costs, and health outcomes data is possible. For example, the comparison of insurance coverage or lack of coverage in 2009 could be linked to health outcomes in 2011.
- Sixteen years of linked MEPS NHIS data provide significant opportunities for cross-sectional, longitudinal analyses. For example, the evaluations trends in the I/DD population from 1996 through 2011 can be explored. As noted below, sample size limitations may require the collapsing of multiple years and year-to-year comparisons may not be feasible. However, general trends over time can be evaluated.
- Most critically, the MEPS and NHIS are ongoing annual data collection programs of the federal government providing a sustainable and ongoing baseline of health data. The absence of a consistent base of information drawn from a sustainable data collection framework prevents us for example, from asking whether the Surgeon General’s initiatives at the outset of the 21st Century 53 have had an impact on the health of Americans with I/DD.
We (people with I/DD) are invisible in the data.
National Health Outcomes Indicators
The National Health Outcomes Indicators project is under the direction of three leading researchers in population studies and I/DD: Drs.Glenn Fujiura, Sandra Magana, and Henan Li of UIC and Dr. Susan Parish of Brandeis.