Stephen P. Gulley

Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

Objectives: To extend what is known about parent reports of their childs need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). Methods: Using data from a 1998–1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. Results: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. Conclusions: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.

The Complex Web of Health: Relationships Among Chronic Conditions, Disability, and Health Services

Objectives. A critical issue in health-care reform concerns how to realign health-care delivery systems to manage medical care services for people with ongoing and costly needs for care. We examined the overlapping health-care needs of two such population groups among the U.S. working-age population (those aged 18–64 years): people with chronic medical conditions and people with disabilities. Methods. Using the Medical Expenditure Panel Survey (2002–2004), we examined differences in health status, service use, and access to care among and between working-age adults reporting disabilities and/or one or more chronic conditions. We also analyzed people with three key chronic conditions: arthritis, diabetes, and depression. Results. More than half of working-age people with disabilities reported having more than one chronic condition. Among those with activities of daily living or instrumental activities of daily living limitations, 35% reported four or more chronic conditions at a time. We found considerable variability in access problems and service use depending on how we accounted for the overlap of multiple conditions among people with arthritis, diabetes, and depression. However, disability consistently predicted higher emergency department use, higher hospitalization rates, and greater access problems. Conclusions. The overall prevalence of chronic conditions among the U.S. working-age population, coupled with the high concentration of multiple chronic conditions among those with disabilities, underscores the importance of reforming health-care delivery systems to provide person-centered care over time. New policy-relevant measures that transcend diagnosis are required to track the ongoing needs for health services that these populations present.

Convergence and divergence: Differences in disability prevalence estimates in the United States and Canada based on four health survey instruments

An analysis of data from the Joint Canada/United States Survey of Health (JCUSH), allows us to compare prevalence estimates that result from four different question sets designed to assess disability from a group of respondents residing in either Canada or the United States. Depending upon the question set used and the coding applied to the responses, age-standardized prevalence estimates varied widely in both countries. In the U.S. noninstitutionalized adult population, disability prevalence estimates ranged from as low as 15.3% to as high as 36.4%, while in Canada the estimates ranged from 13.4% to 37.3%. Concordance and discordance in identification as disabled among these question sets were also examined. In both countries, less than 20% of those identified as disabled by any question set were identified as disabled on all four question sets when using conservative response coding to define disability. Concordance in answers to these questions was also found to be associated with older age, single marital status, low education and low income in both countries. Discordance between question set pairs was similar across both countries whether among measures based on the same domains of disability or different domains of disability. The theory, methods and future of disability measurement in health surveys are discussed in light of these findings. We conclude that understanding and interpreting national prevalence estimates requires more thoughtful attention to the purposes for which data are being collected, the specific definition and operationalizations of disability for those purposes, the methodology used in the data collection and analysis process and the areas of both commonality and difference in the populations identified by each question set. In terms of cross-cultural comparisons, the use of a common set of questions and answer categories and similar survey methodologies provides much more robust results.

Disability in two health care systems: access, quality, satisfaction, and physician contacts among working-age Canadians and Americans with disabilities.

BACKGROUND An overarching question in health policy concerns whether the current mix of public and private health coverage in the United States can be, in one way or another, expanded to include all persons as it does in Canada. As typically high-end consumers of health care services, people with disabilities are key stakeholders to consider in this debate. The risk is that ways to cover more persons may be found only by sacrificing the quantity or quality of care on which people with disabilities so frequently depend. Yet, despite the many comparisons made of Canadian and U.S. health care, few focus directly on the needs of people with disabilities or the uninsured among them in the United States. This research is intended to address these gaps. Given this background, we compare the health care experiences of working-age uninsured and insured Americans with Canadian individuals (all of whom, insured) with a special focus on disability. Two questions for research guide our inquiry: (1) On the basis of disability severity level and health insurance status, are there differences in self-reported measures of access, utilization, satisfaction with, or quality of health care services within or between the United States and Canada? (2) After controlling covariates, when examining each level of disability severity, are there any significant differences in these measures of access, utilization, satisfaction, or quality between U.S. insured and Canadian persons? METHODS Cross-sectional data from the Joint Canada/United States Survey of Health (JCUSH) are analyzed with particular attention to disability severity level (none, nonsevere, or severe) among three analytic groups of working age residents (insured Americans, uninsured Americans, and Canadians). Differences in three measures of access, one measure of satisfaction with care, one quality of care measure, and two varieties of physician contacts are compared. Multivariate methods are then used to compare the healthcare experiences of insured U.S. and Canadian persons on the basis of disability level while controlling covariates. RESULTS In covariate-controlled comparisons of insured Americans and Canadians, we find that people with disabilities report higher levels of unmet need than do their counterparts without disabilities, with no difference in this result between the nations. Our findings on access to medications and satisfaction with care among people with disabilities are similar, suggesting worse outcomes for people with disabilities, but few differences between insured U.S. and Canadian individuals. Generally, we find higher percentages who report having a regular physician, and higher contact rates with physicians among people with disabilities than among people without them in both countries. We find no evidence that total physician contacts are restricted in Canada relative to insured Americans at any of the disability levels. Yet we do find that quality ratings are lower among Canadian respondents than among insured Americans. However, bivariate estimates on access, satisfaction, quality, and physician contacts reveal particularly poor outcomes for uninsured persons with severe disabilities in the United States. For example, almost 40% do not report having a regular physician, 65% report that they need at least one medication that they cannot afford, 45% are not satisfied with the way their care is provided, 40% rate the overall quality of their care as fair or poor, and significant reductions in contacts with two types of physicians are evident within this group as well. CONCLUSION Based on these results, we find evidence of disparities in health care on the basis of disability in both Canada and the United States. However, despite the fact that Canada makes health insurance coverage available to all residents, we find few significant reductions in access, satisfaction or physician contacts among Canadians with disabilities relative to their insured American counterparts. These results place a spotlight on the experiences of uninsured persons with disabilities in America and suggest further avenues for research.

If We Build It, Who Will Come?: Working-Age Adults With Chronic Health Care Needs and the Medical Home

Background:Currently, there is a call to implement and test the patient-centered medical home in adult populations, particularly among those with chronic conditions. However, the size, composition, and service use of the population who might require this coordinated care model need to be assessed, as does the way they are defined and identified. Objectives:Using nationally representative data from the 2002 to 2004 Medical Expenditure Panel Survey, we provide a preliminary profile of the population of working-age adults with chronic health care needs (ACHCN), including those with chronic health conditions and disabilities. Results:ACHCN comprised the majority (52%) of the working-aged population. Relative to persons without chronic health care needs, they had significantly more service use, access problems, and 4 times more health care expenditures. Of the 2 disability groups within the larger population of ACHCN, those reporting need for help or supervision with activities of daily livings (ADLs) or instrumental ADLs (IADLs) had the highest rates/percentages of the following: mean chronic (3.5) and acute (4.4) conditions during the year, service use (all services), and access problems. The ADL/IADL-limited group reported annual medical expenditures totaling 100 billion dollars, more than what was spent on the entire working-age population without chronic health care needs. Conclusions:These data reveal the drawbacks of selecting the potential population targeted for a medical home on the basis of diagnosis alone. New measurement approaches on the basis of shared need for ongoing health and related services are required to bridge the division between disability and chronic health conditions.

Ongoing Coverage for Ongoing Care: Access, Utilization, and Out-of-Pocket Spending Among Uninsured Working-Aged Adults with Chronic Health Care Needs

OBJECTIVES We sought to determine how part-year and full-year gaps in health insurance coverage affected working-aged persons with chronic health care needs. METHODS We conducted multivariate analyses of the 2002-2004 Medical Expenditure Panel Survey to compare access, utilization, and out-of-pocket spending burden among key groups of persons with chronic conditions and disabilities. The results are generalizable to the US community-dwelling population aged 18 to 64 years. RESULTS Among 92 million adults with chronic conditions, 21% experienced at least 1 month uninsured during the average year (2002-2004). Among the 25 million persons reporting both chronic conditions and disabilities, 23% were uninsured during the average year. These gaps in coverage were associated with significantly higher levels of access problems, lower rates of ambulatory visits and prescription drug use, and higher levels of out-of-pocket spending. CONCLUSIONS Implementation of health care reform must focus not only on the prevention of chronic conditions and the expansion of insurance coverage but also on the long-term stability of the coverage to be offered.

Diagnosis isn't enough: Understanding the connections between high health care utilization, chronic conditions and disabilities among U.S. working age adults

BACKGROUND Under the ACA, new programs are being developed to enhance care coordination and reduce health care costs among people with chronic conditions, disabilities, and high utilization of health care. However, the relationships between these groups are not well understood. OBJECTIVES Our aims were to (1) identify high utilizers of health care in the U.S. working age (18-64) population, (2) examine the overlap between this group and people with chronic conditions and/or disabilities, (3) identify predictors of high service use or cost among these subpopulations, and (4) recommend approaches for stratification of individuals with high health care utilization. METHODS Using pooled national data from the Medical Expenditure Panel Survey (2006-2008), we created indices to identify elevated or high utilization and cost groups. We performed descriptive analyses, bivariate comparisons and multivariate analyses to examine the relations between these populations and individuals with chronic conditions and/or disabilities. RESULTS While the large majority of persons with high use/cost had chronic conditions, the minority of persons with chronic conditions had high health care utilization. However, among persons with chronic conditions, disability was a significant predictor of high utilization. Annual expenditures were significantly elevated among people with disabilities, particularly when activities of daily living were limited. CONCLUSIONS We conclude that medical diagnosis alone is insufficient for the development of eligibility criteria for, or the evaluation of, programs intended to better the delivery or coordination of services for high utilizers of health care services. New approaches are needed to assess functional limitations and identify ongoing needs for services and supports.

Difference, disparity, and disability: a comparison of health, insurance coverage, and health service use on the basis of race/ethnicity among US adults with disabilities, 2006-2008.

Background:In the United States, research on health disparities has begun to include people with disabilities as a minority population. However, there is a gap in our knowledge of whether, and to what extent, racial and ethnic disparities may affect the health or health care access of people with disabilities. Objectives:We examined potential disparities in overall health, insurance coverage status, and health service use between non-Hispanic whites, non-Hispanic blacks, and Hispanics, among a nationally representative US sample of adults with and without disabilities (N=63,257), using both bivariate and multivariate methods. We tested 2 definitions of disparity. Results:Under the more conservative definition, we confirmed the presence of both racial and ethnic disparities in overall health, total annual health care visits, and the percentage reporting no doctor visit during the year among people with less severe disabilities; Hispanics also evidenced a disparity in rates uninsured relative to non-Hispanic whites in this group. Racial/ethnic disparities were less common among persons with more severe disabilities that affected activities of daily living or instrumental activities. Conclusions:We conclude that the reduction of disparities between the populations of people with and without disabilities will require specific attention to racial and ethnic disparities in health, insurance coverage, and service use.