National Healthcare Disparities Report, 2008: Chapter 4 (continued)

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National Healthcare Disparities Report, 2008

Individuals With Disabilities or Special Health Care Needs

Individuals with disabilities or special health care needs include individuals with disabilities, individuals who use nursing home care and home health care or end-of-life health care, and children with special heath care needs (CSHCN). Many measures of relevance to individuals with special health care needs are tracked in the NHDR.

In this year's report, data on quality and access are presented for adults with disabilities and CSHCN. This is the second year in which the Adults with Disabilities section has been expanded to to include more analyses and additional data sources using a comparable measure of disability. In this year's report, the Adults With Disabilities section uses data from the National Health Interview Survey (NHIS) for the first time. In the 2007 report, this section used MEPS data.

The appendix tables in this year's report include activity limitations as a stub variable for all NHIS and MEPS appendix tables. The goal for future reports is to include more information about individuals with disabilities using NHIS, MEPS, and additional data sources. As in previous reports, data on quality and access are presented for CSHCN.

Adults With Disabilities

Component of health care need	Measure
Prevention	Pneumococcal vaccination for adults age 65 and over
Access to care	Private health insurance for adults ages 18-64; specific source of ongoing care; and use of hospital, emergency department, or clinic as a source of ongoing care

Children With Special Health Care Needs

Component of health care need	Measure
Management	Care coordination
Patient centeredness	Family-centered care
Access to care	Health insurance status; adequacy of health insurance

Additionally, findings for persons who utilize nursing home care are presented in the section on nursing home, home health, and hospice care in Chapter 2, Quality of Health Care.

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Adults With Disabilities

In reaching its goal to include more information about individuals with disabilities, AHRQ convened a disabilities subgroup of the NHQR/NHDR Interagency Work Group with the assistance of the Interagency Subcommittee on Disability Statistics of the Interagency Committee on Disability Research. The charge to this group was to advise AHRQ on measures of disabilities from existing data that could track disparities for disabled individuals in quality and access to care for the NHDR and that would be comparable across national surveys. For this initial effort, the subgroup focused on measures for adults, a population for which the most survey data are available.

Several ways of defining and measuring disability exist. Among the more common approaches are to identify individuals who have problems in performing everyday functions such as vision, hearing, communication, self-care, mobility, learning, and behavior; have difficulty with complex activities such as working; or meet the eligibility criteria for important income maintenance or training programs (e.g., Social Security Disability Income or vocational rehabilitation). However, a particular challenge in reporting on racial, ethnic, and socioeconomic differences related to disability is that many data collections do not capture disability. When collected, the collection methods are different.

The International Classification of Functioning, Disability and Health (ICF)⁶⁸ was adopted by the disabilities subgroup as a model to guide the deliberations. The subgroup carefully reviewed questions and response categories for three national surveys (NHIS, MEPS, and Medicare Current Beneficiary Survey) for consistencies and discrepancies in measurement of the major domains of disabilities in the ICF.

For the 2008 NHDR, as for the 2007 NHDR, AHRQ is using a broad, inclusive measure of disability that is intended to be consistent with statutory definitions of disability, such as the first criterion of the 1990 Americans with Disabilities Act, 42 U.S.C. §12181 et seq. (i.e., having a physical or mental impairment that substantially limits one or more major life activities^69-70) and Federal program definitions based on the Americans With Disabilities Act. For the purpose of the NHDR, people with disabilities are those with physical, sensory, and/or mental health conditions that can be associated with a decrease in functioning in such day-to-day activities as bathing, walking, doing everyday chores, and/or engaging in work or social activities. In displaying the data on disability, paired measures are shown to preserve the qualitative aspects of the data:

Limitations in basic activities represent problems with mobility and other basic functioning at the person level.
Limitations in complex activities represent limitations encountered when the person, in interaction with his or her environment, attempts to participate in community life.

The use of the subgroup's recommendation of these paired measures of basic and complex activity limitations is conceptually similar to the way others have divided disability^{3, 71} and is consistent with the ICF separation of activities and participation domains.¹ These two categories are not mutually exclusive; people may have limitations in both basic activities and in complex activities.

Prevention: Pneumococcal Vaccination for Adults Age 65 and Over

Vaccination is an effective strategy for reducing illness, death, and disparities associated with pneumococcal disease and influenza.^72-73 Receiving a pneumococcal vaccination is particularly important for high-risk individuals, including older adults, adults with specified chronic conditions, and residents of long-term care facilities.^74-75 Such groups are overrepresented by individuals with disabilities. In 2006, the overall percentage of adults age 65 and over who had ever received a pneumococcal vaccination was 57.3% (data not shown). The Healthy People 2010 target is to have 90% of adults age 65 and over receive a pneumococcal vaccination.

Figure 4.48. Adults age 65 and over who ever received pneumococcal vaccination by race, ethnicity, and family income, stratified by activity limitation, 2006

Basic = basic activity limitation (i.e., limitation in mobility or other basic person-level functioning)
Complex = complex activity limitation (i.e., limitation in ability to participate in community life)
Neither = neither basic nor complex activity limitations.
Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2006.
Reference population: Civilian noninstitutionalized population age 65 and over.
Note: Estimates are age adjusted to the 2000 U.S. standard population. Data for Asians and Hispanics with complex limitations did not meet criteria for statistical reliability.

For all adults age 65 and over, those with basic activity limitations were significantly more likely than those with neither limitation to have had a pneumococcal vaccination (63.1% compared with 54.4%; Figure 4.48).
For White, non-Hispanic White, poor, low-income, and middle-income adults age 65 and over, those with basic activity limitations were significantly more likely than those with neither limitation to have had a pneumococcal vaccination.
For middle-income adults age 65 and over, those with complex activity limitations were significantly more likely than those with neither limitation to have had a pneumococcal vaccination (70.7% compared with 55.3%). Differences between those with complex activity limitations and those with neither limitation were not significant for any other income, race, or ethnic group among adults age 65 and over.
For adults age 65 and over, Blacks were significantly less likely than Whites and non-Hispanic Blacks were significantly less likely than non-Hispanic Whites to have had a pneumococcal vaccination overall and within each of the three activity limitation groups (basic, complex, and neither). For adults age 65 and over, Asians were significantly less likely than Whites and Hispanics were significantly less likely than non-Hispanic Whites to have had a pneumococcal vaccination for those with basic activity limitations and those with neither limitation.
Poor adults age 65 and over were significantly less likely than high-income individuals to have had a pneumococcal vaccination among those with basic activity limitations and those with neither limitation. Poor adults age 65 and over were significantly less likely than those with high income to have had a pneumococcal vaccination among those with neither limitation (37.1% vs. 60.3%).

Access to Health Care: Private Health Insurance for Adults Ages 18-64

Health insurance facilitates entry into the health care system and private health insurance may be associated with the amount and quality of health care received.⁷⁶ Private health insurance is mainly associated with individuals' employment and may be less available to people with disabilities because individuals with disabilities are less likely to be employed.⁷⁷

Figure 4.49. Adults ages 18-64 with any private health insurance, by race, ethnicity, and family income, stratified by activity limitation, 2006

Basic = basic activity limitation (i.e., limitation in mobility or other basic person-level functioning)
Complex = complex activity limitation (i.e., limitation in ability to participate in community life)
Neither = neither basic nor complex activity limitations.
Key: NH = non-Hispanic.
Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2006.
Reference population: Civilian noninstitutionalized population ages 18-64.
Note: Estimates are not age adjusted to the 2000 U.S. standard population.

For all adults ages 18-64, those with complex activity limitations were significantly less likely than those with basic activity limitations to have any private health insurance (39.1% compared with 43.2%; Figure 4.49). Those with basic activity limitations were significantly less likely than those with neither limitation to have any private health insurance (43.2% compared with 72.0%). This same pattern (those with complex activity limitations being less likely than those with basic activity limitations to have private insurance and those with basic activity limitations being less likely than those with neither to have private insurance) holds for Blacks and non-Hispanic Blacks.
For White, Asian, non-Hispanic White, Hispanic, poor, low-income, middle-income, and high-income adults ages 18-64, those with basic or complex activity limitations were significantly less likely than those with neither limitation to have any private health insurance.
For adults ages 18-64, Blacks were significantly less likely than Whites, and non-Hispanic Blacks and Hispanics were significantly less likely than non-Hispanic Whites, to have any private health insurance within each of the three activity limitation groups (basic, complex, and neither).
Poor, low-income, and middle-income adults ages 18-64 were significantly less likely than high-income individuals to have any private health insurance within each of the three activity limitation groups (basic, complex, and neither). Adults ages 18-64 with basic activity limitations and high income were more than eight times as likely as those who were poor to have any private health insurance (80.7% vs. 9.3%).

Access to Care: Specific Source of Ongoing Care

People with a usual source of care (a facility where one regularly receives ongoing care) experience improved health outcomes and reduced disparities (smaller differences between groups)⁷⁸ and costs.⁷⁹ In 2006, the overall percentage of adults who had a specified source of ongoing care was 86.1 (data not shown). The Healthy People 2010 target is to have 96% of adults with a source of ongoing care.

Figure 4.50. Adults with a specific source of ongoing care, by race, ethnicity, and family income, stratified by activity limitation, 2006

Bar graph shows percent adults with a specific source of ongoing care, by race, ethnicity, and family income, stratified by activity limitation, 2006. Highlights are described below..

Basic = basic activity limitation (i.e., limitation in mobility or other basic person-level functioning)
Complex = complex activity limitation (i.e., limitation in ability to participate in community life)
Neither = neither basic nor complex activity limitations.
Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2006.
Reference population: Civilian noninstitutionalized population age 18 and over.
Note: Estimates are not age adjusted to the 2000 U.S. standard population.

For Hispanic, poor, or low-income adults age 18 and over, those with basic or complex activity limitations were significantly more likely than those with neither limitation to have a specific source of ongoing care (Figure 4.50). For Black or non-Hispanic Black adults age 18 and over, those with basic activity limitations were significantly more likely than those with neither limitation to have a specific source of ongoing care. Asian adults age 18 and over with complex activity limitations were significantly more likely than those with neither limitation to have a specific source of ongoing care (93.2% compared with 84.8%).
For adults age 18 and over with neither limitation, Hispanics were significantly less likely than non-Hispanic Whites to have a specific source of ongoing care. Poor and low-income adults with neither limitation were significantly less likely than high-income adults to have a specific source of ongoing care. None of the other racial, ethnic, or income differences were statistically significant within any of the three activity limitation groups.

Access to Care: Use of Hospital, Emergency Room, or Clinic as a Source of Ongoing Care

In many cases, individuals have a source of ongoing care, but it is not a primary care physician or other health professional who can be seen regularly. Some people use hospitals, emergency rooms, or clinics as a source of ongoing care. Although these may meet certain patients' needs, they may not always provide the continuity of care associated with a regular primary care provider.

Figure 4.51. Adults who identified a hospital, emergency room, or clinic as a source of ongoing care, by race, ethnicity, and family income, stratified by activity limitation, 2006

Bar graph shows percent adults who identified a hospital, emergency room, or clinic as a source of ongoing care, by race, ethnicity, and family income, stratified by activity limitation, 2006. Highlights are described below.

Basic = basic activity limitation (i.e., limitation in mobility or other basic person-level functioning)
Complex = complex activity limitation (i.e., limitation in ability to participate in community life)
Neither = neither basic nor complex activity limitations.
Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2006.
Reference population: Civilian noninstitutionalized population age 18 and over.
Note: Estimates are not age adjusted to the 2000 U.S. standard population. Data for Asians with complex limitations did not meet criteria for statistical reliability.

Among adults age 18 and over, those with basic activity limitations were more likely than those with neither limitation to use hospitals, emergency rooms, or clinics as their source of ongoing care (22.4% compared with 15.0%; Figure 4.51). This finding was also true for those with complex activity limitations (23.4% compared with 15.0%).
Among White, Hispanic, and low-income adults age 18 and over, those with basic or complex activity limitations were significantly more likely than those with neither limitation to use hospitals, emergency rooms, or clinics as a source of ongoing care. Among Black, non-Hispanic White, non-Hispanic Black, and poor adults age 18 and over, those with complex activity limitations were significantly more likely than those with neither limitation to use hospitals, emergency rooms, or clinics as a source of ongoing care. Asian adults age 18 and over with basic activity limitations were significantly more likely than those with neither limitation to use hospitals, emergency rooms, or clinics as a source of ongoing care (36.2% compared with 14.5%).

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Children With Special Health Care Needs

Addressing questions on access to and quality of care for children with chronic conditions is difficult due to the low prevalence of most conditions in children.^80-82 A standard definition of CSHCN was developed in 1995.^{80, 83} This definition was subsequently used to develop the CSHCN Screener Questionnaire⁸⁰ and was included in the 2001 and 2005-2006 National Survey of Children With Special Healthcare Needs (NSCSHCN),^84-86 among other surveys.

According to MEPS, in 2004, approximately 13.8 million children, or 20% of the child population ages 0-17, were identified as having a special health care need (i.e., a specific chronic condition with a functional limitation or other consequence). Among the most highly prevalent chronic conditions of childhood in 2005 were asthma (13% of children under age 18), upper respiratory allergies (12% of children under 18), learning disabilities (7% of children ages 3-17), and attention-deficit/hyperactivity disorder (7% of children ages 3-17).⁸⁷ Other conditions that may affect CSHCN include depression, spina bifida, hemophilia, HIV infection, cystic fibrosis, and metabolic disorders.⁸⁸

Having higher health care needs makes CSHCN susceptible to cost, quality, and access weaknesses in the health care system.⁸⁹ Because they need more medical care, CSHCN have higher medical expenses, on average, than other children.^{80, 84, 90} For more than one in five CSHCN, costs of care caused financial problems for their families.⁸⁵

In addition to financial burdens, families of CSHCN spend considerable time caring for them. An estimated 9.7% of CSHCN had families who spent 11 or more hours per week providing or coordinating care in 2005-2006.⁸⁵ Studies have documented that children with chronic conditions in poor families and racial and ethnic minority groups may experience lower quality care.^91-92 Children with chronic conditions are reported by their parents to be less likely than other children to receive the full range of needed health services.⁹³ Among CSHCN, minorities are more likely than White children to be without health insurance coverage or a usual source of care.⁹⁴

Two quality measures (care coordination and family-centered care) and two access measures (health insurance status and adequacy of health insurance) of relevance to CSHCN are tracked in this section of the NHDR.

Focus on Care Coordination

CSHCN often need access to multiple health professionals. The children's families may need assistance coordinating care across providers and settings. For families who use more than one health or related service and wanted or needed help with care coordination, effective care coordination requires receiving "as much help as a family wants with arranging or coordinating care."

Figure 4.52. Children with special health care needs who received wanted or needed care coordination, by race (top), ethnicity (middle), and family income (bottom), 2005-2006

Bar graph showing children with special health care needs who received wanted or needed care coordination, by race, 2005-2006. Total: 59.2%. White: 61.1%; Black: 55%; Asian: 52.5%; AI/AN: 53.9%; NHOPI: 58.5%; >1 Race: 57.4%.

Bar graph showing children with special health care needs who received wanted or needed care coordination, by ethnicity, 2005-2006. Non-Hispanic White: 62.0%. Hispanic: 49.9%.

Bar graph showing children with special health care needs who received wanted or needed care coordination, by family income, 2005-2006. Poor: 53.3%. Near Poor: 55.1%. Middle Income: 61.9%. High Income: 63.5%.

Overall, 59.2% of CSHCN were reported to have received needed or wanted care coordination (Figure 4.52).
AI/AN and Asian CSHCN were reported to have the lowest levels of care coordination among racial groups (53.9% and 52.5%, respectively, compared with White CSHCN, 61.1%).
Hispanic CSHCN received less care coordination than non-Hispanic White CSHCN (49.9% compared with 62.0%).
CSHCN in high- and middle-income families had higher rates of care coordination (63.5% and 61.9%, respectively) than CSHCN in poor and near-poor families (53.3% and 55.1%, respectively).

Focus on Family-Centered Care

Family-centered care requires providers who:

Spend adequate time with the child.
Listen carefully to the parent.
Show sensitivity to family values and customs.
Communicate specific needed health information.
Help the family feel like a partner in the child's care.
Help the family with language interpretation when needed.

Figure 4.53. Children with special health care needs without family-centered care, by race (top), and ethnicity (bottom), stratified by income, 2005-2006

Bar graph showing children with special health care needs without family-centered care,, by race, stratified by income, 2005-2006. Highlights are described below.

Key AI/AN = American Indian or Alaska Native; NHOPI = Native Hawaiian or Other Pacific Islander.
Source: Health Resources and Services Administration, Maternal and Child Health Bureau; Centers for Disease Control and Prevention, National Center for Health Statistics, National Survey of Children With Special Health Care Needs (CSHCN), 2005-2006.
Reference population: Civilian noninstitutionalized population ages 0-17 with special health care needs.
Note: Data for low-income and high-income Native Hawaiians and Pacific Islanders did not meet criteria for statistical reliability.

Overall, 34.5% of CSHCN were without family-centered care in 2005-2006 (data not shown).
The contribution of income to differences in family-centered care by race and ethnicity was significant. For example, 43.9% of poor White CHSCN lacked family-centered care, compared with 29.4% of White CSHCN overall (Figure 4.53). More than half of poor Black CSHCN (56.4%) lacked family-centered care, compared with 47.8% of Black CSHCN overall. More than 60% of poor Hispanic CSHCN (62.4%) lacked family-centered care, compared with 35.4% of high-income Hispanic CSHCN.
Significant differences between racial and ethnic groups remained overall. More than half (52.6%) of Hispanic CSHCN lacked family-centered care, compared with 28.0% of non-Hispanic White CSHCN, not accounting for variations in income.

Access to Care

Access to care for CSHCN is especially critical since they may require more frequent and costly visits than other children. Having health insurance is an important facilitator to accessing needed medical care.

Figure 4.54. Children with special health care needs who were without health insurance at some point in the last 12 months, by race, ethnicity, and income, 2005-2006

Bar graph showing percent children with special health care who were without health insurance at some point in the last 12 months, by race, ethnicity, and income, 2005-2006. Total: 8.8%. By Race: White: 7.6%; Black: 11.1%; AI/AN: 15.3%; More than 1 Race: 9.1%. By Ethnicity: Non-Hispanic White: 7.1%; Hispanic: 15.1%. By Income: Poor: 14.2%. Low Income: 14.1%. Middle Income: 7.1%. High Income: 2.9%.

Key AI/AN = American Indian or Alaska Native.
Source: Health Resources and Services Administration, Maternal and Child Health Bureau; Centers for Disease Control and Prevention, National Center for Health Statistics, National Survey of Children With Special Health Care Needs (CSHCN), 2005-2006.
Reference population: Civilian noninstitutionalized population ages 0-17 with special health care needs.
Note: Data for Asians and Native Hawaiians and Pacific Islanders did not meet criteria for statistical reliability.

Overall, 8.8% of CSHCN were without health insurance at some point during 2005-2006.
White CSHCN were less likely to be without health insurance (7.6%). Black (11.1%), AI/AN (15.3%), and multiple-race (9.1%) CSHCN were more likely to be without insurance at some point during 2005-2006. Among Hispanic CSHCN, 15.1% were without insurance at some point during 2005-2006, compared with 7.1% of non-Hispanic White CSHCN.
Poor and low-income CSHCN were more likely to be without health insurance (14.2% and 14.1%, respectively) than middle- and high-income CSHNC (7.1% and 2.9%, respectively).
Compared with data from 2001, in 2005-2006, the percentage of CSHCN without health insurance at some point during the past year declined for White CSHCN (10.4% in 2001 and 7.6% in 2005-2006) and CSHCN of more than one race (14.3% in 2001 and 9.1% in 2005-2006) but did not change between 2001 and 2005-2006 for Black CSHCN (11.1% at both time points) (data not shown). The 2001 data are insufficient to make comparisons for other racial groups.
The percentage of Hispanic CSHCN without health insurance declined between 2001 and 2005-2006 (19.4% and 15.1%, respectively; data not shown, available at http://www.ahrq.gov/qual/nhdr04/fullreport/Appd.htm).
Similarly, the percentage of poor and low-income CSHCN without health insurance declined between 2001 and 2005-2006 (21.8% and 20.3%, respectively, in 2001, and 14.2% and 14.1% in 2005-2006), as did the percentages for middle- and high-income CSHCN (2001 data not shown).

Figure 4.55. Currently insured children with special health care needs whose insurance is not adequate, by race (top), ethnicity (middle), and income (bottom), 2005-2006

Bar graph showing percent currently insured children with special health care needs whose insurance is not adequate, by race, 2005-2006. Total: 33.1%; White: 32.5%; Black: 33.2%; Asian: 30%; AI/AN: 40.7%; NHOPI: 40.8%; More than one race: 29.7%.

Bar graph showing currently insured children with special health care needs whose insurance is not adequate, by ethnicity, 2005-2006. Non-Hispanic White: 32.3%. Hispanic: 37.3%.

Bar graph showing currently insured children with special health care needs whose insurance is not adequate, by income, 2005-2006. Poor: 35.8%; Low Income: 34.0%; Middle Income: 34.6%; High Income: 29.0%.

Key AI/AN = American Indian or Alaska Native; NHOPI = Native Hawaiian or Other Pacific Islander.
Source: Health Resources and Services Administration, Maternal and Child Health Bureau; Centers for Disease Control and Prevention, National Center for Health Statistics, National Survey of Children With Special Health Care Needs (CSHCN), 2005-2006.
Reference population: Civilian noninstitutionalized population ages 0-17 with special health care needs who have health insurance.
Note: Among CSHCN with insurance, adequacy of health insurance assesses the degree to which benefits cover the child's needs, uncovered costs are reasonable, and the child is able to see the providers he or she needs.

Overall, the percentage of CSHCN with less than adequate insurance was 33.1% in 2005-2006 (Figure 4.55).
In 2005-2006, the percentage of CSHCN with less than adequate insurance was higher for AI/ANs and NHOPIs (40.7% and 40.8%, respectively) than for Whites (32.5%).
Hispanic CSHCN were more likely to have less than adequate insurance than non-Hispanic White CSHCN (37.3% compared with 32.3%). Poor, low-income, and middle-income CSHCN were more likely to have less than adequate insurance (35.8%, 34.0%, and 34.6%, respectively) than high-income CSHCN (29.0%).
From 2001 to 2005-2006, the overall percentage of CSHCN with less than adequate insurance remained the same (33.5% in 2001, 33.1% in 2005-2006).^xvii However, the percentage for Hispanic CSHCN decreased (from 45.9% to 37.3%; data not shown). The percentage for poor CSHCN also decreased (from 43.0% to 35.8%; data not shown).

^xvii The 2001 data not shown are available at http://www.ahrq.gov/qual/nhdr04/fullreport/Appd.htm.

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