Journal of Pediatric Nursing
Volume 22, Issue 5 , Pages 353-355, October 2007

Extending the Reach of Our Knowledge and Understanding

Article Outline

 

Beginning in 1985, the U.S. Department of Education, Office of Special Education Programs has supported efforts to track the secondary and postsecondary outcomes of children and youth enrolled in special education to investigate the impact of the Individuals with Disabilities Education Act (IDEA) and subsequent amendments legislation in effecting programmatic reforms. The first survey, the National Longitudinal Transition Survey (NLTS) beginning in 1985 through 1993, and the second national survey, the NLTS2 from 2001 to 2010, represent an extraordinary effort to collect data from a national representative sample of approximately 10,000 respondents. In contrast, there have not been comparable efforts undertaken to track long-term outcomes of children and youth with chronic illnesses and disabilities who eventually age out of the pediatric system of health care. A brief summary of findings as reported by the NLTS and NLTS2 together with selected findings from the U.S. Census Bureau will highlight the progress of achievement for students enrolled in special education that could serve as a model for comparable monitoring for youth with chronic illnesses and disabilities who exit the health care delivery system.

Examination of the findings from the second NLTS2 conducted in 2003 reveals improvements from the first NLTS undertaken in 1987. Despite continued improvement in the academic achievement nationwide of students with disabilities in special education, the high school dropout rate (27.6%) continues to be high and more than double the dropout rate of students without disabilities (10.9%), although it improved by 17 percentage points from 1987 to 2003 (Wagner, Newman, Cameto, & Levine, 2005). This situation is concerning as the postsecondary outcomes of students who drop out of school have demonstrated that these students are at greater risk for poorer outcomes as compared to students with disabilities who complete high school. For example, findings of the NLTS2 revealed that students with disabilities (41%) who were high school dropouts had significantly lower rates of employment, as compared to students without disabilities (66%; Wagner et al., 2005).

There continues to be significant differences in the employment rates of individuals with and without disabilities, although the differences are slowly improving. As reported in the 2005 U.S. Disability Status Report, the employment rate for young adults (21 years and older) and adults with disabilities is 38.1%, as compared to 78.3% for people without disabilities (Cornell University, Rehabilitation Research and Training Center on Disability Demographics and Statistics, 2005, National Organization on Disability, 2004). The employment rate for young adults with disabilities (18–29 years) shows promise as 57% of individuals with disabilities and 72% of individuals without disabilities report being employed. Until recently, the job profiles of employed adolescents and young adults with disabilities have been primarily in the low-pay and low-skill category; findings of the NLTS2 noted a 16% increase in the number of youth employed in retail jobs, as compared to findings of the NLTS 25 years earlier (Wagner et al., 2005).

According to the NLTS2 report, the percentages of youth who reported having worked for pay since leaving high school had increased to 70% from 55% during the past 25 years. Both White (12.7%) and African American (26.2%) students showed increases in the likelihood of having paid employment during the past 25 years, with gains greatest for African American students. Twenty-five years ago, White youth demonstrated significantly higher levels of paid employment after leaving school, as compared to African American youth. In contrast, modest gains were seen for Hispanic youth (5%). The percentage of youth in 2003 who were engaged only in work activities decreased significantly from 57% to 38% as greater numbers of youth were enrolled in postsecondary educational programs.

Level of independence for young adults with disabilities is considered a benchmark of successful transition (DeFur & Patton, 1999). Research and population surveys of individuals with disabilities indicate that this goal has yet to be realized among many of these individuals. Findings of the NLTS2 survey revealed that 73% of former students lived with parents, 15% reported living independently (dorm, military), and 1% lived in large institutional facilities. White youth (19%) were significantly more likely to be living independently, as compared to African American youth (4%; <.05; Wagner et al., 2005).

These findings provide educators, families, youth, and policymakers with the data needed to comprehensively assess the impact of IDEA and its subsequent amendments. A particularly noteworthy aspect of these surveys is the postsecondary follow-up component that has been integrated within this survey design to demonstrate an important array of lifestyle outcomes following high school exit.

There have been several national surveys conducted to provide health and health-related information on children and youth with special health care needs and disabilities. These surveys include the National Survey of Children with Special Health Care Needs, the Medical Expenditure Panel Survey, the National Health Interview Survey, and the National Health Interview Survey on Disability (Agency for Healthcare Research and Quality, 2006, Centers for Disease Control & National Center for Health Statistics, 2007, National Center for Health Statistics, U.S. Department of Health and Human Services, 2003, Wenger et al., 1995, van Dyck et al., 2004).

Unlike the NLTS and NLTS2 surveys, these surveys focused on the collection of data of children and youth up to 18 years of age pertaining to disease and/or disability prevalence, service needs, limitations related to daily activities, and pediatric health care service utilization and costs. The surveys are not designed to measure outcomes related to youth entry into the adult health care system. There are numerous logistical and programmatic difficulties associated with following youth and young adults once they have exited a system of care. Some of the difficulties include the inability of system-related databases to effectively “communicate” with one another as the identification number/code of the client changes from one system to another, the Health Insurance Portability and Accountability Act of 1996 regulations (U.S. Department of Health and Human Services, Office for Civil Rights, 2007), the lack of resources available to conduct a significant national survey of this scope, and the variability within the adult health care service system itself. There have been few reports of specialty-driven follow-up surveys of youth with chronic conditions and disabilities conducted in the United States and internationally, most notably in countries wherein the health care system is nationalized as in Canada and Great Britain (Hunt & Oakeshott, 2003, Reid et al., 2003). A national survey, comparable to the NLTS survey model, would be an invaluable resource to inform the consumers, the public, providers, and policymakers on the long-term outcomes of health care for children and youth with chronic illnesses and disabilities and provide additional evidence to effect changes within the pediatric health care system.

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PII: S0882-5963(07)00295-3

doi:10.1016/j.pedn.2007.08.003

Journal of Pediatric Nursing
Volume 22, Issue 5 , Pages 353-355, October 2007

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