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6

Disability and
Secondary Conditions

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Co-Lead Agencies:

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Centers for Disease Control and Prevention
National Institute on Disability and Rehabilitation Research, U.S. Department of Education

[Note: The Healthy People 2010 Information Access Project provides dynamic, pre-formulated PubMed searches for selected objectives in this focus area so that current information and evidence-based strategies related to these objectives are easier to find. The National Library of Medicine has also provided PubMed links to available references that appear at the end of this focus area document.]

Contents

GoalPage 6-3

Overview. Page 6-3

spacerIssues. Page 6-3

spacerTrends. Page 6-4

spacerDisparities. Page 6-5

spacerOpportunities. Page 6-6

Interim Progress Toward Year 2000 Objectives. Page 6-7

Healthy People 2010—Summary of Objectives. Page 6-8

Healthy People 2010 Objectives. Page 6-9

Related Objectives From Other Focus Areas. Page 6-22

Terminology. Page 6-25

References. Page 6-26



Goal

Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population.

Overview

Because disability status has been traditionally equated with health status, the health and well-being of people with disabilities has been addressed primarily in a medical care, rehabilitation, and long-term care financing context. Four main misconceptions emerge from this contextual approach: (1) all people with disabilities automatically have poor health, (2) public health should focus only on preventing disabling conditions, (3) a standard definition of “disability” or “people with disabilities” is not needed for public health purposes, and (4) the environment plays no role in the disabling process. These misconceptions have led to an underemphasis of health promotion and disease prevention activities targeting people with disabilities and an increase in the occurrence of secondary conditions (medical, social, emotional, family, or community problems that a person with a primary disabling condition likely experiences).

Issues

Challenging these misconceptions will help to clarify the health status of people with disabilities and address the environmental barriers that undermine their health, well-being, and participation in life activities. A broad array of health promotion activities are relevant to all people experiencing a disability, whether they are categorized by racial or ethnic group, gender, and primary conditions or diagnoses, such as major depression, cerebral palsy, diabetes, spinal cord injury, or fetal alcohol syndrome. The similarities among people with disabilities are as important as or more important than the differences among clinical diagnostic groups. Caregiver issues also have been considered, as well as environmental barriers. Environmental factors affect the health and well-being of people with disabilities in many ways. For example, weather can hamper wheelchair mobility, medical offices and equipment may not be accessible, and shelters or fitness centers may not be staffed or equipped for people with disabilities. Compliance with the Americans with Disabilities Act (ADA) would help overcome some of these barriers. A crosscutting goal is to eliminate disparities with the nondisabled population.

The International Classification of Functioning and Disability (ICIDH-2), developed by the World Health Organization (WHO) with the input of numerous nations—including the United States—provides uniform language and a framework for describing functioning, health, and disability status among all people.[1] This framework clarifies definitional issues and includes environmental factors.

Trends

An estimated 54 million persons in the United States, or nearly 20 percent of the population, currently live with disabilities.[2] Data for the period 1970 to 1994 suggest that the proportion is increasing.[3] The increase in disability among all age groups indicates a growing need for public health programs serving people with disabilities.

From 1990 to 1994, disability rates increased among youth under age 18 years.3 There was a 33 percent increase in activity limitations among girls, from 4.2 percent to 5.6 percent, and a 40 percent increase in activity limitations among boys, from 5.6 percent to 7.9 percent.

Among adults aged 18 to 44 years, there was a 16 percent increase in activity limitations, from 8.8 percent in 1990 to 10.3 percent in 1994.3 This increase suggests that 3.1 million more people aged 18 to 44 years were limited in 1994 than in 1990.

The absolute number of adults aged 65 years and older with disabilities increased from 26.9 million in 1982 to 34.1 million in 1996.  Because the total number of adults aged 65 years and older increased even faster, the proportion of those with disabilities declined from 24.9 percent in 1982 to 21.3 percent in 1994.3 However, the rise in numbers indicates a growing need for programs and services to serve this older population.

The direct medical and indirect annual costs associated with disability are more than $300 billion, or 4 percent of the gross domestic product.[4] This total cost includes $160 billion in medical care expenditures (1994 dollars) and lost productivity costs approaching $155 billion.

The health promotion and disease prevention needs of people with disabilities are not nullified because they are born with an impairing condition or have experienced a disease or injury that has long-term consequences.[5] People with disabilities have increased health concerns and susceptibility to secondary conditions. Having a long-term condition increases the need for health promotion that can be medical, physical, social, emotional, or societal.

People who have activity limitations report having had more days of pain, depression, anxiety, and sleeplessness and fewer days of vitality during the previous month than people not reporting activity limitations.[6] Increased emotional distress, however, does not arise directly from the person’s limitations. The distress is likely to stem from encounters with environmental barriers that reduce the individual’s ability to participate in life activities and that undermine physical and emotional health. In view of the increased rates of disability among youth, it is particularly important to target activities and services that address all aspects of health and well-being, including promoting health, preventing secondary conditions, and removing environmental barriers, as well as providing access to medical care. For an older person with a disability, it is important to target worsening coexisting conditions that may intensify and thus threaten general well-being. For example, declining vision combined with declining hearing can greatly impair mobility, nutrition, and fitness.[7]

Disparities

Disability can be viewed as a universal phenomenon everyone experiences at some time.[8] Disability also can be viewed as representing a minority of the population, in that people with disabilities may be less visible, undercounted, and underserved.[9] As a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population. People with disabilities may experience lack of access to health services and medical care and may be considered at increased risk for various conditions.


Disability graph

Few data systems identify people with disabilities as a subpopulation. Disparities need to be identified to plan appropriate public health programs. Despite the paucity of data, some disparities between people with and without disabilities have been noted. These disparities include excess weight, reduced physical activity, increased stress, and less frequent mammograms for women over age 55 years with disabilities.[10]

Opportunities

Health promotion programs that focus on improving functioning across a spectrum of diagnoses and a range of age groups are effective in reducing secondary conditions and outpatient physician visits among people with disabilities.[11], [12], [13] For example, a focus on improving muscle tone, flexibility, and strength can accrue benefits for mobility-impaired people in wheelchairs and mobility-impaired people with arthritis.[14] For people with communication disabilities and disorders, interventions can improve access to health-enhancement programs. People with sight impairments can have access to readable job applications, food labels, and medications. People with hearing impairments can have access to televised or videotaped exercise programs that are captioned or signed by interpreters depicted within an inset of a video screen. Often, the most effective interventions may be environmental rather than medical.

Many health promotion interventions already in place for the population at large may be easily adapted to the needs of people with disabilities. New strategies can be influenced by results from studies that describe risk factors for secondary conditions or protective factors against additional impairments. For example, the number of cases of secondary osteoporosis among able-bodied women and their range of bone mineral density deficits can be estimated by using existing Federal data sets. The degree to which women exercise and ingest calcium or estrogen supplements also can be estimated, leading to measurements of the influence of both risk and protective factors associated with osteoporosis in the able-bodied population. Because women with mobility impairments experience an elevated risk for secondary osteoporosis at earlier ages, their risk factors, including diminished bone mineral density, and their potential protective factors, including optimal calcium or estrogen supplementation and types of exercise, become critically important epidemiologic parameters.[15], [16] The results of investigations of secondary osteoporosis already influence health promotion strategies among able-bodied women. Similar investigations can augment the development of health promotion strategies among women with disabilities.

Current guidelines provide opportunity to design health promotion interventions targeting people with disabilities that accommodate ongoing evidence-based evaluation[17] and demonstrate cost-effectiveness.[18], [19] For example, clinical interventions that focus on appropriate and timely medical care can be equally accessible for people with and without disabilities. Mammography screening is recommended every 1 to 2 years, with or without an annual clinical breast examination, for able-bodied women aged 50 to 69 years.[20] This recommendation also can be adapted for women with disabilities. Clinical providers, however, must first recognize the reasons women with disabilities often refrain from seeking mammography services, such as the lack of adaptive equipment on mammography screening machines or unfamiliarity with the needs of people with disabilities expressed by clinicians. Counseling to prevent injuries among all adults also is recommended. For example, men and women with disabilities, especially those with skeletal insufficiencies or calcium deficits, are at increased risk for fractures. Adding bone mineral screening and fitness counseling during clinical encounters may be beneficial in preventing injuries. In these ways, evidence-based health promotion and disease prevention programs can be developed, implemented, and evaluated to target the health and injury disparities between people with and without disabilities.

Health promotion interventions for people with disabilities—in the community, clinical settings, or elsewhere—should include culturally and linguistically appropriate elements.

Interim Progress Toward Year 2000 Objectives

Healthy People 2000 did not have a chapter specifically establishing health objectives for people with disabilities. However, some objectives targeted people with disabilities, including leisure-time physical activity, use of community support programs by people with severe mental disorders, treatment for depression, activity limitations associated with chronic conditions and back conditions, and receipt of recommended clinical preventive services. A progress review held in January 1997 showed that none of these specific objectives relevant to people with disabilities had been met,10 and parity with the nondisabled population will continue to be monitored.

People with disabilities reporting no leisure-time physical activity declined from the 1985 baseline of 35 percent to 29 percent in 1995, short of the target of 20 percent for 2000. In addition, the review noted several disparities: 40 percent of people with disabilities aged 20 years and older reported being overweight compared with 35 percent of the general population and short of the goal of 25 percent; 49 percent of people aged 18 years and older with disabilities reported adverse health effects from stress compared with 34 percent of the general population; and clinical preventive services showed disparities for data on tetanus boosters (56 percent versus 59 percent for the general population), Pap tests (69 percent versus 77 percent of women aged 18 years and over in 1994), and breast exams and mammograms (50 percent versus 56 percent for women aged 50 years and over).

Note: Unless otherwise noted, data are from the Centers for Disease Control and Prevention, National Center for Health Statistics, Healthy People 2000 Review, 1998–99.


Healthy People 2010—Summary of Objectives

Disability and Secondary Conditions

Goal: Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population.

Number

Objective Short Title

6-1

Standard definition of people with disabilities in data sets

6-2

Feelings and depression among children with disabilities

6-3

Feelings and depression interfering with activities among adults with disabilities

6-4

Social participation among adults with disabilities

6-5

Sufficient emotional support among adults with disabilities

6-6

Satisfaction with life among adults with disabilities

6-7

Congregate care of children and adults with disabilities

6-8

Employment parity

6-9

Inclusion of children and youth with disabilities in regular education
programs

6-10

Accessibility of health and wellness programs

6-11

Assistive devices and technology

6-12

Environmental barriers affecting participation in activities

6-13

Surveillance and health promotion programs

 


Healthy People 2010 Objectives

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6-1.

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Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify "people with disabilities."

Target: 100 percent.

Baseline: No Healthy People 2010 surveillance instruments include a standard set of questions that identify people with disabilities in 1999.

Target setting method: Total coverage.

Data source: CDC, NCEH.

The call for statistics on people with disabilities is longstanding and increasing. Various Federal agencies have attempted to collect these data in several research areas.[21] Two separate issues exist regarding data collection: (1) using different operational definitions of disability and (2) not collecting information from people with disabilities during surveys. None of the federally funded surveys attempting to collect data on people with disabilities is using the same definition of disability. This lack of standardization has made it difficult to (1) identify and include individuals with a disability, (2) measure the nature and extent of disability in the United States, (3) assess the impact of various disabilities on the person’s ability to participate in society, (4) assess the extent of secondary conditions among people with disabilities, and (5) identify environmental barriers to participation and risk factors for poor health in this population.

The issue of not including people with disabilities is reflected in the initial survey design. Most studies are not designed to include, target, and analyze data on people with disabilities. People with disabilities could be included as a select population if, for example, the data collection method ensured appropriate access and outreach.

To remedy these gaps, a set of survey questions has been developed and is being tested to identify individuals with varying degrees of disability in terms of activity limitations.[22] This short set of questions may be placed in the core of all Healthy People surveillance instruments that collect demographic data to include and standardize information on people with disabilities. On the basis of standardization and inclusion in the Nation’s disability data collection activities, the call for disability statistics may be satisfied. Once collected, these data will help government policymakers, consumers and advocates, researchers, and clinicians make better informed choices to promote the health status and well-being of people with disabilities.

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6-2.

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Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed.

Target: 17 percent.

Baseline: 31 percent of children and adolescents aged 4 to 11 years with disabilities were reported to be sad, unhappy, or depressed in 1997.

Target setting method: 45 percent improvement (parity with children and adolescents without disabilities in 1997).

Data source: National Health Interview Survey (NHIS), CDC, NCHS.

Children and Adolescents Aged 4 to 11 Years, 1997

Reported To Be Sad,
Unhappy, or Depressed

With
Disabilities

Without
Disabilities*

Percent

TOTAL

31

17

Race and ethnicity

American Indian or Alaska Native

DSU

DSU

Asian or Pacific Islander

DSU

13

Asian

DSU

16

Native Hawaiian and other Pacific Islander

DSU

DSU

Black or African American

DSU

16

White

31

17

 

Hispanic or Latino

32

16

Not Hispanic or Latino

30

17

Black or African American

DSU

17

White

31

18

Gender

Female

32

16

Male

30

18

Family income level

Poor

37

20

Near Poor

31

17

Middle/high income

27

17

Geographic location

Urban

27

17

Rural

39

16

DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
*The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.

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6-3.

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Reduce the proportion of adults with disabilities who report feelings such as sadness, unhappiness, or depression that prevent them from being active.

Target: 7 percent.

Baseline: 28 percent of adults aged 18 years and older with disabilities reported feelings that prevented them from being active in 1997 (age adjusted to the year 2000 standard population).

Target setting method: 75 percent improvement (parity with adults aged 18 years and older without disabilities in 1997).

Data source: National Health Interview Survey (NHIS), CDC, NCHS.

Adults Aged 18 Years and Older, 1997

Reported Feelings That
Prevent Activity

With
Disabilities

Without
Disabilities*

Percent

TOTAL

28

7

Race and ethnicity

American Indian or Alaska Native

22

15

Asian or Pacific Islander

30

7

Asian

DSU

6

Native Hawaiian and other Pacific Islander

DSU

14

Black or African American

31

8

White

28

7

 

Hispanic or Latino

40

9

Not Hispanic or Latino

27

7

Black or African American

31

8

White

27

6

Gender

Female

30

8

Male

26

6

Family income level

Poor

38

13

Near Poor

30

10

Middle/high income

21

6

Education level (aged 25 years and older)

Less than high school

34

10

High school graduate

29

7

At least some college

25

5

Geographical location

Urban

29

7

Rural

26

6

DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
Note: Age adjusted to the year 2000 standard population.
*The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.

Children and adults with disabilities and their families face issues of coping, adapting, adjusting, and learning to live well with the disability—a dynamic, ongoing process. Good mental health, including refusing to internalize the social stigma of disability and developing a positive attitude and strong self-esteem, is a key ingredient to overcoming these issues.[23] Improving mental health status among people with disabilities and their families will help address psychological barriers and enhance their ability to participate fully in society.[24]


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6-4.

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Increase the proportion of adults with disabilities who participate in social activities.

Target: 100 percent.

Baseline: 95.4 percent of adults aged 18 years and older with disabilities participated in social activities in 1997 (age adjusted to the year 2000 standard population).

Target setting method: Total participation (parity with adults aged 18 years and older without disabilities in 1997).

Data source: National Health Interview Survey (NHIS), CDC, NCHS.

Adults Aged 18 Years and Older, 1997

Participation in Social Activity

With
Disabilities

Without
Disabilities*

Percent

TOTAL

95.4

100.0

Race and ethnicity

American Indian or Alaska
Native

87.4

100.0

Asian or Pacific Islander

99.6

100.0

Asian

99.5

100.0

Native Hawaiian and other Pacific Islander

100.0

100.0

Black or African American

95.0

99.8

White

95.6

100.0

 

Hispanic or Latino

93.9

100.0

Not Hispanic or Latino

95.5

100.0

Black or African American

95.0

99.8

White

95.7

100.0

Gender

Female

95.2

99.9

Male

95.7

100.0

Family income level

Poor

93.1

99.9

Near Poor

95.8

99.9

Middle/high income

96.5

100.0

Education level (aged 25 years and older)

Less than high school

94.1

99.9

High school graduate

94.8

99.9

At least some college

96.0

100.0

Geographic location

Urban

95.3

100.0

Rural

95.6

99.9

DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
Note: Age adjusted to the year 2000 standard population.
*The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.

People with disabilities report significantly lower levels of social participation compared with people without disabilities.[25] Participating in social activities routinely requires personal interaction with the environment, a component of life that is vital to the well-being of all humanity. ICIDH-2, the International Classification of Functioning and Disability, highlights the importance of participating in social activities as a measurable outcome of living well with a disability.1 The ICIDH-2 framework indicates that the environment should be examined as a barrier to participation.

Social participation can include activities such as volunteering, shopping, going to the movies, or attending sporting events. Targeting increased participation in regular social activities such as traveling, socializing with friends and family, attending church or community events, and voting can result in improved functional status and well-being.

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6-5.

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Increase the proportion of adults with disabilities reporting sufficient emotional support.

Target: 79 percent.

Baseline: 71 percent of adults aged 18 years and older with disabilities reported sufficient emotional support in 1998 (data from 11 States and the District of columbia; age adjusted to the year 2000 standard population).

Target setting method: 11 percent improvement (parity with adults aged 18 years and older without disabilities in 1998).

Data source: Behavioral Risk Factor Surveillance System (BRFSS), CDC, NCCDPHP.

Adults Aged 18 Years and Older, 1998

Reported Sufficient
Emotional Support*

With
Disabilities

Without
Disabilities
**

Percent

TOTAL

71

79

Race and ethnicity

American Indian or Alaska Native

56

72

Asian or Pacific Islander

49

66

Asian

DSU

DSU

Native Hawaiian and other Pacific Islander

DSU

DSU

Black or African American

53

68

White

74

82

 

Hispanic or Latino

44

68

Not Hispanic or Latino

72

80

Black or African American

DNA

DNA

White

DNA

DNA

Gender

Female

70

79

Male

70

78

Education level (aged 25 years and older)

Less than high school

58

70

High school graduate

74

76

At least some college

74

83

DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable.
Note: Age adjusted to the year 2000 standard population.
*Data are from 11 States and the District of Columbia.
**The total represents the target. Data for population groups by race, ethnicity, gender, socioeconomic status, and geographic location are displayed to further characterize the issue.

Emotional support often is derived from a person’s social support systems. Two hypotheses suggest that social support helps a person cope with stress and that supportive relationships are a protective factor in various life situations.[26] With the information gained by monitoring the personal perspective, the United States may better meet the needs of people with disabilities.

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6-6.

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Increase the proportion of adults with disabilities reporting satisfaction with life.

Target: 96 percent.

Baseline: 87 percent of adults aged 18 years and older with disabilities reported satisfaction with life in 1998 (data from 11 States and the District of Columbia; age adjusted to the year 2000 standard population).

Target setting method: 10 percent improvement (parity with adults without disabilities in 1998).

Data source: Behavioral Risk Factor Surveillance System (BRFSS), CDC, NCCDPHP.

Adults Aged 18 Years and Older, 1998

Reported Satisfaction
With Life*