OBJECTIVES. Although considered critical to facilitate the successful transition from pediatric to adult health care, the continuity of insurance coverage for young adults with disabilities as they make the transition to adulthood has not been well characterized. The purpose of this work was to compare the continuity of insurance coverage reported by a nationally representative sample of young adults 16 to 25 years old with and without disabilities during a consecutive 36-month period.
METHODS. We performed secondary analysis of data from the 2001 Survey of Income Program and Participation. Data for the survey were collected at 4-month intervals from February 2001 through January 2004 for 5170 young adults. Subjects with disabilities were those who reported limitations in activities of daily living or work, used assistive devices, and/or had learning disabilities, mental retardation, or other mental disorders. The primary outcome was uninsurance defined for each study month in which there was no coverage by private, public, or military programs. We present bivariate analyses of the months of uninsurance according to disability status using longitudinal weights and design-effect adjustments to account for the complex sample design.
RESULTS. The sample consisted of 599 subjects with and 4571 without reported disabilities, representing 3970000 and 30800000 young adults in the United States, respectively. At study entry, 22% of the young adults with disabilities were uninsured. During the 36-month follow-up period, 56% of the young adults with disability reported gaps in insurance coverage with a mean of 15 months of uninsurance. The proportion of uninsured subjects did not significantly differ by disability status.
CONCLUSIONS. The majority of young adults with disabilities reported gaps in insurance coverage, and many were uninsured for a substantial portion of the study period. As an increasing number of children with special health care needs make the transition to adulthood, improving the continuity of health insurance coverage for this population warrants specific attention.
Because an estimated 500000 children with disabilities and other special health care needs reach adulthood each year, the health care transitions of these youth have garnered increasing attention.1–4 Among the many life and health care transitions that characterize this period, young adults must also negotiate changes in health insurance coverage. Many of these youth have ongoing health issues; therefore, continuous health insurance coverage is desirable to allow timely access to health care during young adulthood and to facilitate the transition to adult health care.5–7
The continuity of health insurance coverage for young adults with disabilities has not been well characterized to date. Many become ineligible for the public coverage or their parent's private health insurance at age 19 years. Full-time students may be eligible for continued coverage on their parents’ policy until they complete college.8 However, as they age out of the coverage that they held as children, young adults are twice as likely to be uninsured as children or older adults,9–11 and studies suggest that young adults with disabilities have rates of uninsurance that are similarly high.8,12,13 Most current studies of health insurance coverage for young adults with disabilities are limited to cross-sectional data that fail to capture discontinuities in health insurance coverage over time and may underestimate the numbers who are uninsured during young adulthood.
The 3 specific aims of this study were to use longitudinal survey data to compare the continuity of health insurance coverage and the number of months of uninsurance reported by adolescents and young adults with and without disabilities during a 36-month period and to assess the continuity of health insurance for different age groups of young adults with disabilities.
We performed secondary analyses of data from the 2001 Survey of Income Program and Participation (SIPP). The SIPP is a federally funded longitudinal multiyear panel survey of the civilian noninstitutionalized population administered by the US Census Bureau.14 The purpose of the SIPP is to collect information on income, labor force, and program participation of individuals and households in the United States. The 2001 SIPP included in-person and telephone interviews conducted at ∼4-month intervals from February 2001 through January 2004 for a total of 9 interviews over 36 months. Because of budget constraint, the US Census Bureau cut the size of the survey sample by ∼25% between waves 1 and 2 (from 40500 eligible households to 30500 eligible households).15 The sample was not cut for the remaining waves (waves 3–9).15 Original sample members were followed regardless of subsequent changes in residence. The US Census Bureau used imputation procedures to handle missing data. Longitudinal weights were provided by the US Census Bureau to account for panel attrition and poststratification adjustments to make the weighted sample totals conform to population totals for key variables.14 The survey weights permit estimations that project to the noninstitutionalized population in the United States. SIPP data are publicly available as microdata files and may be downloaded from www.sipp.census.gov.
We included all of the respondents who were 16 to 25 years old at the time of the first interview and for whom information was available for the entire 36 months of the survey. We chose to include respondents with the entire 36 months of data to allow for a longitudinal assessment of insurance status for longer periods of time. Of the 9234 young adults who completed wave 2 of the 2001 SIPP, 5170 subjects (56%) had complete data for the entire 36 months.
Definition of Disability
Respondents were asked about physical and mental limitations during interviews conducted at months 8, 20, and 32. Using survey data, we defined disability as a reported learning or mental impairment (including learning or developmental disability and mental retardation) or limitations in activities of daily living (ADL), instrumental activities of daily living (IADL), or work because of a physical or mental condition and/or the use of assistive devices, such as hearing aids or canes for ≥6 months. ADL included getting around inside the home, getting in or out of a bed or chair, bathing, dressing, and toileting. IADL included getting around outside the home, taking care of money and bills, preparing meals, doing light housework, or using the telephone. This definition of disability has been used previously to estimate rates of disability in the United States.16
The comparison group included 16- to 25-year-olds without reported limitation. Based on cell size requirements published by the US Census Bureau, the sample was sufficient to provide reliable national estimates of the entire US population of young adults with and without disabilities.17
Health Insurance Coverage and Sociodemographic Variables
The primary outcome was health insurance coverage, which was determined for each study month and expressed as a dichotomous variable. Respondents were considered insured for every month that they reported coverage by private, public, or military programs. Continuously insured young adults reported insurance coverage for each month of the 36-month period, whereas those with gaps reported ≥1 month of noncoverage.
We used survey data to identify the respondent's age at study entry, gender, race, ethnicity, employment and student status, and household income. Young adults often age out of public and private coverage held as children at age 19 or 22 years8; therefore, we stratified young adults into 3 age categories based on their age at the initial interview: 16 to 18 years, 19 to 21 years, and 22 to 25 years. Household income was expressed as a percentage of the US Census Bureau's poverty threshold for each survey year after considering overall family size and number of children in the household.18 For reference, the weighted average poverty threshold for a family of 4 was $18104 in 2001 and $19307 in 2004.18
We used design effect adjustments provided by the US Census Bureau to account for the complex sample design and longitudinal weights to project the sample to the US noninstitutionalized population.17 We calculated SEs of the estimates of sociodemographic and insurance characteristics for young adults with and without disabilities using generalized variance parameters provided by the US Census Bureau.17 To test for differences in the characteristics of young adults with and without disabilities, we calculated SEs of the difference of sample estimates using formulae provided by the US Census Bureau.17 We report significance at the 5% level when the estimates differed by >1.96 times the calculated SE of the difference and at the 1% level when estimates differed by >2.57 times the calculated SE of the difference.17 The study was approved by the institutional review board of Vanderbilt University Medical Center.
In the study population, 11.4% of 16- to 25-year-olds reported having a disability, representing ∼4 million young adults with disabilities in the United States. Among those with disabilities, 48% had learning or mental impairments, 45% were limited in functional activities, 37% reported limitations in the ability to work, 16% had limitations in ADL or IADL, and 7% used assistive devices. Overall, 58% of young adults with disabilities reported being limited in >1 of these disability domains. Young adults with disabilities did not differ from peers without disabilities in terms of age, Hispanic ethnicity, or marital status at the time of the initial interview (Table 1). Young adults with disabilities were significantly more likely than peers without disabilities to be black and to live in a household with an income <200% of the poverty threshold and were less likely to be attending school or to be employed at the time of the initial interview.
Insurance Coverage According to Disability Status
Table 2 displays the health insurance characteristics of young adults with and without disabilities. Young adults in both groups were equally likely to be insured at the start of the study. Compared with peers without disability, young adults with disabilities were significantly less likely to have private health insurance (P < .01) and significantly more likely to have public coverage at the start of the study (P < .01).
Continuity of Insurance Coverage According to Disability Status
The majority of young adults with disabilities reported gaps in health insurance coverage, and young adults with disabilities were as likely as those without disabilities to report having a gap in health insurance coverage (56% vs 54%). Twenty-eight percent of young adults with disabilities were uninsured between 1 and 12 months, and another 28% were uninsured for ≥13 of the 36 months of the study period. Youth with disabilities who experienced gaps in coverage reported being uninsured for a mean of 15 months out of the 36-month period. The mean number of months without health insurance did not significantly differ for young adults with or without disabilities.
Insurance Coverage of Young Adults With Disabilities According to Age
When stratified by age at the start of the study, youth who were 16 to 18 years old were significantly less likely than older peers to be uninsured at the start of the study. They were also less likely to report a gap in coverage during the 36-month period (P < .05). As shown in the Fig 1, 5% of 16- to 18-year-olds were uninsured at the start of the study, and 46% reported a gap in coverage during the next 36 months. Among 19- to 21-year-olds, 30% were uninsured at the start of the study, and 62% reported a gap in coverage during the study period. Similar rates were seen for 22- to 25-year-olds, with 30% reporting uninsurance at the start of the study and 60% reporting a gap in coverage during the study period. Although 18% of 16- to 18-year-olds were uninsured for >12 months, one third of 19- to 21- and 22- to 25-year-olds were uninsured for >12 months.
In this study, we used longitudinal data to assess characteristics of insurance coverage during a 36-month period for a nationally representative sample of young adults with and without disabilities. We found that the majority of young adults in our study experienced a gap in health insurance coverage during the study, and many were uninsured for a substantial period of time. The proportion of young adults with disabilities who experienced gaps in coverage and the mean number of months of uninsurance did not differ from the group of youth without disabilities.
Previous studies using cross-sectional data provide estimates that 20% to 26% of young adults with disabilities are uninsured at a point in time.8,12,13 The findings of our study add to the literature by using longitudinal data to assess insurance status over time. Although the proportion of young adults who were uninsured at the start of the study is consistent with previous point-in-time estimates, the longitudinal data show that 56% of young adults with disabilities were uninsured during the 3-year study. Because they are more likely to have ongoing health issues, we hypothesized that young adults with disabilities would have greater incentive to maintain continuous health insurance coverage than their peers without disability. Our study findings did not support this hypothesis but rather suggest that the chasm between health insurance coverage options for children with disabilities and those for adults creates a period of particular vulnerability for young adults with disability.
In our study, young adults over age 18 years at the start of the study were more likely than those less than age 18 years to experience gaps in coverage. Most children with disabilities are insured through public coverage or as a dependent on their parent's private health insurance, and the majority will lose eligibility for both of these types of coverage during young adulthood.5,8,19 Medicaid coverage is not available to most young adults unless they are parenting. Supplemental Security Income provides coverage for only one fourth of children with disabilities, and requirements become more stringent at age 19 years. Consequently, approximately one third of adolescents who receive Supplemental Security Income do not qualify for similar coverage in adulthood.5 Young adults with disabilities may be less likely to have access to private health insurance than peers without disability as demonstrated by the differences in insurance coverage at baseline in our study. The majority of adults obtain private health insurance through employment-based coverage. Youth with disabilities are less likely to be employed or to work full-time than peers without disability,20 thus, it is likely that they would have greater difficulty procuring employment-based health insurance coverage.
Our study also demonstrates that youth with discontinuous health insurance coverage are uninsured for extended periods of time. We found that young adults with disabilities who experienced gaps in coverage were uninsured for a mean of 15 of the 36 months. Many youth with disabilities require ongoing health care to reduce morbidity and improve functioning. As young adults with disability transfer from pediatric to adult health care providers, lack of health insurance may limit their options for adult health care.1,21,22 In addition to its effects on access to health care for disability management, lack of health insurance is likely to reduce access to preventive health care.11,23
We anticipated that a greater need and awareness for health care might positively affect insurance rates for young adults with disabilities relative to those without disabilities. However, it is also possible that persons with disabilities may have less opportunity to gain health insurance through employment or full-time student status, the means by which most young adults are covered. Thus, it is also plausible that disability status could result in lower rates of insurance and higher rates of discontinuity. These social determinants of health and health care access are important issues, and additional study to assess the potential health impact of discontinuities in health insurance in this population will be important.
Some states have proposed or enacted policies that may reduce gaps in health insurance coverage during young adulthood. Several states have enacted or are considering legislation to raise the age limit for dependent health insurance coverage, including New Jersey, which passed legislation in 2006 that allows young adults to qualify for dependent health insurance coverage to age 30 years.24,25 Increasing the age of eligibility for dependent coverage may benefit young adults with disabilities, because many of these youth will not qualify for public coverage based on their disability and/or income. In recent years, New Jersey, Massachusetts, and other states extended eligibility for public health insurance programs like Medicaid and State Children's Health Insurance Program beyond age 18 years to childless young adults who meet income guidelines.10,26,27 Unfortunately, provisions in these states were subsequently scaled back because of budgetary issues. Pediatric and young-adult providers should keep abreast of initiatives in their state and consider contributing their expertise to local and national policy initiatives.
This study has several potential limitations. The SIPP is based on self-report and may be subject to recall and nonresponse bias. However, imputation procedures and the brief time between interviews are designed to minimize these sources of bias. In addition, nonresponse and loss to follow-up may make the study sample differ from the underlying population. Although weighting procedures and sampling techniques used by the US Census Bureau account for declining participation, this potential limitation is important to take into consideration in interpreting the study results. Assessment for disability occurred at differing points during study follow-up; therefore, we do not know how many of the young adults developed limitations after the onset of the study or if those limitations resolved within the study period.
Despite increasing focus on issues of health care transition for young adults with disabilities, this study suggests that the majority of youth with disabilities will be uninsured during young adulthood, many for a substantial period of time. Uninsurance rates for young adults with disabilities were comparable to young adults without disabilities. Expanding the availability of private and public coverage and developing other strategies to reduce gaps in coverage are potentially important targets to improve health care for young adults with disabilities. Policy changes suggested by others have included extending the age for dependant coverage through private insurance through the age of 23 years, extending eligibility for Medicaid and other government programs through the age of 23 years, and ensuring that colleges and universities require all students to have some form of insurance coverage.10 Additional research should examine the implications of uninsurance on the health and health care access of young adults with disabilities.
This study was supported by a grant from the Vanderbilt Physician Scientist Development program (to Dr Callahan).
- Accepted January 30, 2007.
- Address correspondence to S. Todd Callahan, MD, MPH, Division of Adolescent Medicine, Vanderbilt Children's Hospital, 11128 Doctors’ Office Tower, Nashville, TN 37232-9060. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
This work was presented in part at the annual meeting of the Pediatric Academic Societies; May 1, 2006; San Francisco, CA.
- ↵American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics.2002;110(6 suppl) :1304– 1306
- Field MJ, Jette AM, Martin LG, eds. Workshop on Disability in America: A New Look—Summary and Background Papers. Washington, DC: National Academies Press; 2006
- ↵Fishman E. Aging out of coverage: young adults with special health needs. Health Aff (Millwood).2001;20 :254– 266
- ↵Callahan ST, Cooper WO. Uninsurance and health care access among young adults in the United States. Pediatrics.2005;116 :88– 95
- ↵McManus MA, Newacheck PW, Greaney AM. Young adults with special health care needs: prevalence, severity, and access to health services. Pediatrics.1990;86 :674– 682
- ↵US Census Bureau. Survey of income and program participation users’ guide. Available at: www.bls.census.gov/sipp/usrguide/sipp2001.pdf. Accessed January 23, 2007
- ↵US Census Bureau. Technical documentation: Survey of Income Program and Participation (SIPP) 2001 panel, wave 2 microdata file. Available at: www.census.gov/apsd/techdoc/sipp/sipp.html. Accessed January 23, 2007
- ↵Cahoon LS. SIPP 2001: source and accuracy statement for the 9-wave longitudinal file. US Census Bureau. Available at: www.sipp.census.gov/sipp/sourceac/S&A01_20051005_Long(S&A-3).pdf. Accessed January 23, 2007
- ↵US Census Bureau. How the US Census Bureau measures poverty (official measure). Available at: www.census.gov/hhes/www/poverty/povdef.html. Accessed January 17, 2007
- ↵US Social Security Administration, Office of Disability and Income Security Programs. Red book: a summary guide to employment support for people with disabilities under the Social Security Disability Insurance and Supplemental Security Income programs. Available at: www.ssa.gov/redbook/eng/main.htm. Accessed January 23, 2007
- ↵Schulzinger R. Youth With Disabilities in Transition: Health Insurance Options and Obstacles. Gainesville, FL: Institute for Child Health Policy; 2000
- ↵McQueen MP. Health insurers must cover adult children. Wall Street Journal. April 11, 2006:D1
- ↵New Jersey Pub L No. 2005, c. 375. Coverage for certain dependents until age 30 by hospital service corporation; 2005
- ↵Long SK, Zuckerman S, Graves JA. Are adults benefiting from state coverage expansions? Health Aff (Millwood).2006;25 :w1– w14
- Copyright © 2007 by the American Academy of Pediatrics