Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 8 (2015) 23–30 DOI 10.3233/PRM-150315 IOS Press
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Transition outcomes for young adults with disabilities Sue C. Lina,b,∗ , Mei-Ling Ting Leeb and Terry A. Adirimc
a Bureau of Primary Health Care, Health Resources and Services Administration, US Department of Health and Human Services, Rockville, MD, USA b Department of Epidemiology and Biostatistics, University of Maryland, College Park, MD, USA c Drexel University College of Medicine, Philadelphia, PA, USA
Accepted for publication: 29 September 2014
Abstract. PURPOSE: Transition to adulthood can be very challenging for children with special health care needs (CSHCN) especially for those with disabilities who experience functional limitations in activities at home, in school, and in the community. The study examined the transition outcomes in areas of health, education, and independent living for young adult with special health care needs (YASHCN) with disabilities. METHOD: The study is a secondary data analysis of the 2007 Survey of Adult Transition and Health (SATH). Multivariate logistic regression analysis assessed the association between having disabilities and the transition outcomes. RESULTS: Overall, YASHCN with disabilities reported favorable health related transition outcomes with improved access to primary care, care coordination, and physician engagement in transition discussions and connection to mentors. Furthermore, YASCHN with disabilities had higher odds of receiving Medicaid or other insurance for low income or disabilities as an adult (AOR = 5.26, 95% CI = 3.74, 7.04). However, they were less likely to report having control over personal finances, making friends, and obtaining a high school diploma. CONCLUSION: The findings suggest that YASHCN with disabilities may be among the small proportion of CSHCNs who had a positive transition to adult health care services. However, transition outcomes related to independent living still need more improvements. Keywords: Transition outcome, disabilities, health, independent living
1. Purpose The prevalence estimate of children with special health care needs (CSHCN) in the United States has steadily increased from 12.8% in 2001, to 13.9% in 2005–2006, and most recently to 15.1% in 2009– 2010 [1–3]. The federal Maternal and Child Health Bureau (MCHB) defined CSHCN “as children who have or are at greater risk for a chronic physical, develop∗ Corresponding author: Sue C. Lin, Bureau of Primary Health Care, Health Resources and Services Administration 5600 Fishers Lane, 16W54 Rockville, MD 20857, USA. Tel.: +1 301 443 2923; Fax: +1 301 594 5224; E-mail: [email protected].
mental, behavioral, or emotional condition and who also require more health care-related services beyond that required by typically developing children” [4]. Advances in medical treatments have significantly improved the CSHCN survival into adulthood [5,6]. As more CSHCN become adults, systems of care are needed to provide continuous, age appropriate, and family centered supports [7,8]. However, the percentage of youth with special health care needs receiving the services necessary to effectively and seamlessly transition to adult health care has been very low with only an estimated 41.2% of adolescents between the ages 12–17 years fully meeting MCHB’s health-related transition quality indicator in 2005–2006 [9,10]. Moreover, young adults with special health care needs
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(YASHCN) who are low income encounter additional challenges of gaps in insurance coverage as well as delayed medical care [11]. For YASHCN with disabilities, the transition to adulthood can be even more challenging than for YASHCN [12–14]. The Americans with Disabilities Act defines an individual with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment [15]. YASHCN with disabilities have an array of health issues such as functional decline, pain, and physical inactivity that are additional hurdles to independence [16,17]. In addition, YASHCN with disabilities face numerous barriers to employment including lack of parental and educator expectations, knowledge of available vocational services, post high school opportunities, and self-advocacy skills [18,19]. Furthermore, YASHCN with disabilities experienced challenges in friendships, social life, and access to quality housing that impact successful transition to adult independent living [20]. Supporting YASHCN with disabilities in becoming independent and active participants in their communities requires closely coordinated services to support health, education, and independent living [21]. The transition to adulthood for YASHCN with disabilities is both a complex phenomenon and a dynamic process [22,23]. In 2007, MCHB funded the Survey of Adult Transition and Health (SATH) to examine the current health care needs and transition experience of YASHCN age 19–23 years whose parents had previously responded to the 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) [24]. Using data from the 2007 SATH, this study compares the transition experience of YASHCN with and without disabilities with regard to health, education, and independent living.
2. Methods 2.1. Description of dataset The 2007 SATH was administered by the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS) and conducted by the State and Local Area Integrated Telephone Survey (SLAITS) program. The self-reported information collected through SATH sought to advance knowledge
about the health and well-being of YASHCN and the challenges and successes of transitioning into adulthood for those living in English speaking households. The SATH used a follow-back survey design to identify respondents whose parents were originally interviewed in the 2001 NS-CSHCN when the respondents were 14 to 17 years old (10,933 eligible cases). The 2001 NS-CSHCN was supported by MCHB to establish prevalence estimates of CSHCN in the United States and understanding of the health and functional status of CSHCN and their families [25]. Data from NS-CSHCN also provided demographic and socioeconomic characteristics, access to care, satisfaction with care, and impact on the families for CSHCN [26]. Subsequent NS-CSHCN surveys were conducted in 2005– 2006 and 2009–2010. The final sample size in the public use file (PUF) is 1865 completed interviews with YASHCN [27]. Although the SATH PUF contained one interview weight for each sampled young adult, NCHS recommended the consideration of the SATH sample as a convenience sample rather than a random or complex sample because of the sample design, response rate, and the possibility of non-response bias. The detailed design, operation, and methodology of the survey are described elsewhere [20]. The NCHS Research Ethics Review Board approved all data collection procedures. This study was approved for institutional review board (IRB) exemption from the University of Maryland, College Park. 2.2. Variables A YASHCN with disabilities is defined by combined positive responses from parents or guardian to the following three questions regarding disabilities from the 2001 NS-CSHCN: 1) child has limited ability to do things, 2) limited ability is due to medical/ behavioral/other health conditions, and 3) condition has lasted/expected to last twelve months. The sociodemographic variables in the analyses are comprised of age, race/ethnicity (white, black, multiracial and other), gender, insurance status in 2001 (public insurance, private insurance, and uninsured), and household poverty level with four categories including < 100%, 100–199%, 200–399%, and 400% of the federal poverty level (FPL) [28]. The outcomes of interest were binary variables in three transition areas: 1) health care; 2) school; and 3) independent living. The survey questions on transition outcomes related to health care are comprised of the following:
S.C. Lin et al. / Transition outcomes for young adults with disabilities
– Has a usual health care source, usual routine preventive care source, and a personal doctor or nurse; – Health care delayed or forgone in last 12 months; – Gets help arranging or coordinating care or need extra help in arranging care in the past 12 months; – Doctors have discussed how needs might change with age; – Doctors have discussed how to obtain or keep insurance as adults; – Doctors help connect with youth or adult mentors. The survey questions on transition outcomes related to school include the following: – – – –
Received vocational or career training; Obtained high school diploma; Developed transition plan; Participated in transition plan development.
The survey questions on transition outcomes related to independent living included questions on: – – – – – – – –
Choosing how to spend money; Planning weekend activities; Making choices that are important; Making friends; Has general life satisfaction; Receiving social and emotional support; Has more ability to pay for necessities; Living with parents.
Finally, the study also examined health insurance status with the following questions: – Receive Medicaid or other insurance for low income or disabilities; – Has health insurance benefits that meet needs; – Has insurance that allows to see providers as needed; – Pay any money for health care. For survey questions with four response categories of 1) never, 2) sometimes, 3) usually, and 4) always, responses were dichotomized to combine “usually” and “always” responses into one category and “never” and “sometimes” into the other. 2.3. Statistical analyses χ2 statistics assessed the bivariate association between having disabilities and sociodemographic variables of race/ethnicity, gender, household poverty level, age in 2001 and insurance type in 2001. Similarly, bivariate analysis was conducted between having disabilities and the transition outcomes related to
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health care, school, and independent living as well as the health insurance status. Multivariate logistic regression analysis computed adjusted odds ratios (AOR) and 95% confidence intervals (CI) for transition outcomes with significant χ2 statistics from the bivariate analysis while controlling for select individual-level sociodemographic factors mentioned above. SAS version 9.3 (SAS Inc., Cary NC) was used to carry out the statistical analysis [29]. Although the SATH weights have been adjusted for non-response to the SATH interview with demographic information from the 2001 NS-CSHCN, NCHS advised that an extensive analysis of SATH non-response bias has not been conducted [20]. Therefore, the analysis did not use the sampling weights to generate population-based estimates.
3. Results Table 1 summarizes the sociodemographic characteristics of YASHCN with disabilities (N = 413) and those without (N = 1438). The sample population was predominantly white for both YASHCN with and without disabilities. The distribution of age among the two groups closely resembled each other. However, we found differences in gender distribution, household poverty level and insurance type in 2001. Gender was more evenly distributed among YASHCN with disabilities with 52.5% male and 47.5% female. 61% of YASCHN without disabilities were male. 30.4% of YASHCN with disabilities were in families who lived above 400% FPL as compared to 41.3% of YASHCN without disabilities. In addition, 23.3% of YASHCN with disabilities received public insurance benefits in 2001 whereas only 8.2% of YASHCN without disabilities did. In Table 2, the bivariate analysis illustrates the differences between YASHCN with and without disabilities for the three transition outcomes of health care, school, and independent living as well as health insurance status as an adult. Within transition outcomes for health care, YASHCN with disabilities reported a higher percentage and had significant χ2 statistics for the following: 1) Has usual health care source (76.5% vs. 70.2%, p-value: 0.01); 2) Has usual routine preventive care source (84.5% vs. 79.3%, p-value: 0.02); 3) Has a personal doctor or nurse (77.0% vs. 71.1%, p-value: 0.02); 4) Gets help arranging or coordinating care (51.5% vs. 33.6%, p-value: < 0.001); 5) Need extra help in arranging care in the past 12 months
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Table 1 Descriptive demographic characteristics of transition age young adults with special health care needs (YASHCN) with disabilities as compared to other YASHCN Characteristics Race/ethnicity White Black Multiracial Other Gender Male Female Household poverty level < 100% 100–199% 200–399% 400+% Age in 2001 14 years old 15 years old 16 years old 17 years old Insurance Type in 2001 Private insurance Public insurance Uninsured
YASHCN with disabilities (N = 413) %
YASHCN without disabilities (N = 1438) %
84.0 6.0 3.2 6.8
91.2 4.3 2.5 2.0
52.5 47.5
61.0 39.0
8.0 25.0 36.6 30.4
5.0 13.3 40.4 41.3
26.6 26.4 26.9 20.1
25.9 27.0 25.7 21.4
72.7 23.3 4.0
89.3 8.2 2.5
Chi-square p-value < 0.001
0.002 < 0.001
0.91
< 0.001
Source: 2007 Survey of Adult Transition and Health.
(16.6% vs. 10.7%, p-value: 0.001); 6) Need a referral in past 12 months (32.9% vs. 25.4%, p-value: 0.003); 7) Doctors have discussed how needs might change with age (60.1% vs. 53.8%, p-value: 0.02); and 8) Doctors helped you connect with youth or adult mentors (30.4% vs. 21.3%, p-value: < 0.001). For transition outcome related to school, YASHCN with disabilities reported a statistically significant lower percentage of obtaining high school diploma (82.3% vs. 93.1%, pvalue: < 0.001). In the transition outcome related to independent living, YASHCN with disabilities reported lower percentage across almost all aspects with the exception of living with parents. For health insurance status, YASHCN with disabilities reported a much higher percentage receiving Medicaid or other insurance for low income or disabilities (39.5% vs. 10.1%, p-value: < 0.001) and lower percentage on pay any money for health care (77.2% vs. 82.4%, p-value: 0.02). Table 3 displays the multivariate logistic regression analysis for select survey questions on transition outcomes and health insurance status that had significant chi-square p-values in the bivariate analysis. The referent group is YASHCN without disabilities. Overall, YASHCN with disabilities had increased odds of having an usual health care source (AOR = 1.47, 95% CI = 1.11, 1.94), having a usual routine preventive care source (AOR = 1.63, 95% CI = 1.17, 2.26), having a personal doctor or nurse (AOR = 1.68, 95% CI =
1.26, 2.24), getting help in arranging or coordinating care (AOR = 2.22, 95% CI = 1.73, 2.85), needing extra help arranging care in the past 12 months (AOR = 1.52, 95% CI = 1.07, 2.16), needing a referral in the past 12 months (AOR = 1.54, 95% CI = 1.18, 2.01), having doctors discuss how needs might change with age (AOR = 1.38, 95% CI = 1.08, 1.76), and having doctors help in connecting with youth or adult mentors (AOR = 1.46, 95% CI = 1.12, 1.91). With respect to the transition outcome related to school, YASHCN with disabilities were at decreased odds of obtaining high school diploma (AOR = 0.42, 95% CI = 0.30, 0.61). When examining the transition outcome related to independent living, the analysis indicates negative associations for YASHCN with disabilities on choosing how to spend money (AOR = 0.34, 95% CI = 0.25, 0.46), planning weekend activities (AOR = 0.52, 95% CI = 0.41, 0.68), making choices that are important (AOR = 0.30, 95% CI = 0.22, 0.41), making friends (AOR = 0.31, 95% CI = 0.23, 0.43), and having more ability to pay for necessities (AOR = 0.34, 95% CI = 0.26, 0.45). YASHCN with disabilities had increased odds for living with their parents (AOR = 1.68, 95% CI = 1.29, 2.19). Finally, YASCHN with disabilities had higher odds of receiving Medicaid or other insurance for low income or disabilities as an adult (AOR = 5.26, 95% CI = 3.74, 7.04).
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Table 2 Observed self-report of transition outcomes of young adults with special health care need (YASHCN) with disabilities as compared to other YASHCN
Transition outcomes related to healthcare Has usual health care source Has usual routine preventive care source Has a personal doctor or nurse Health care delayed/forgone in last 12 months Gets help arranging or coordinating care Need extra help arranging care in past 12 months Need a referral in past 12 months Doctors have discussed how needs might change with age Doctors discussed how to obtain/keep insurance as adults Doctors helped you connect with youth/adult mentors Transition outcomes related to school Receive vocational/career training Obtain high school diploma Develop transition plan Participate in transition plan development Transition outcomes related to independent living Choose how to spend money (usually/always) Plan weekend activities (usually/always) Make choices that are important (usually/always) Make friends (usually/always) Has general life satisfaction (satisfied/very satisfied) Receive social and emotional support (usually/always) Has more ability to pay for necessities Living with parents Health insurance status Receive Medicaid or other insurance for low income/disabilities Has health insurance benefits that meet needs (usually/always) Has insurance that allows to see provider as needed (usually/always) Pay any money for health care
YASHCN with disabilities (N = 413) %
YASHCN without disabilities (N = 1438) %
Chi-square p-value
76.5 84.5 77.0 28.3 51.5 16.6 32.9 60.1 53.8 30.4
70.2 79.3 71.1 26.8 33.6 10.7 25.4 53.8 52.7 21.3
0.01 0.02 0.02 0.57 < 0.001 0.001 0.003 0.02 0.70 < 0.001
59.1 82.3 62.9 85.4
59.4 93.1 62.2 89.5
0.91 < 0.001 0.79 0.07
72.9 61.9 74.0 65.5 93.4 90.1 19.4 71.4
89.7 77.2 91.3 85.5 95.6 89.1 31.2 57.3
< 0.001 < 0.001 < 0.001 < 0.001 0.06 0.59 < 0.001 < 0.001
39.5 70.5 75.7 77.2
10.1 73.6 77.5 82.4
< 0.001 0.22 0.45 0.02
Source: The 2007 Survey of Adult Transition Health.
4. Conclusion This study found both positive and negative results in the transition experience of YASHCN with disabilities. Overall, YASHCN with disabilities reported favorable outcomes in health-related transition with improved access to primary care, care coordination, and physician engagement in transition discussions and connection to mentors. These findings may be reflective of healthcare system continual efforts towards medical home transformation that include provision of family-centered care and effective care coordination [30–33]. Access to a usual source of care with enhanced care coordination could be beneficial in their receipt of more comprehensive care that includes prevention of secondary conditions [34,35]. The increased odds of receiving Medicaid benefits and other insurance for low income or disabilities for YASHCN with disabilities may suggest that they may be among the small proportion of CSHCNs who received pub-
lic health insurance benefits as adults. As a result, they may not have experienced significant deterioration in access to care as they entered adulthood [36–39]. However, these YASHCN with disabilities continued to need additional help and referral for health care services in adulthood, which is expected given their complex health conditions and ongoing medical needs [40]. For the transition outcome related to school, YASHCN with disabilities had much lower odds of obtaining a high school diploma. This may be a result in the passage of the No Child Left Behind Act (NCLB) of 2001, which emphasized statewide assessment, adequate yearly progress in educational outcomes, and highly qualified teachers for general and special education [41,42]. Students with disabilities have historically performed poorly on state educational assessments [43]. The educational assessment requirements of NCLB for graduation may have had negative implications for YASHCN with disabilities by limiting opportunities to obtain their high school diploma.
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Table 3 Adjusted odds ratio (AOR) for selected components of transition outcomes for young adults with special health care need (YASHCN) with disabilities AOR Transition outcomes related to healthcare Has usual health care source Has usual routine preventive care source Has a personal doctor or nurse Gets help arranging or coordinating care Need extra help arranging care in past 12 months Need a referral in past 12 months Doctors have discussed how needs might change with age Doctors helped you connect with youth/adult mentors Transition outcomes related to school Obtain high school diploma Transition outcomes related to independent living Choose how to spend money (usually/always) Plan weekend activities (usually/always) Make choices that are important (usually/always) Make friends (usually/always) Has more ability to pay for necessities Living with parents Health insurance status and adequacy Receive Medicaid or other insurance for low income/disabilities Pay any money for health care
YASHCN with disabilities 95% Confidence Interval
1.47 1.63 1.68 2.22 1.52 1.54 1.38 1.46
1.11 1.17 1.26 1.73 1.07 1.18 1.08 1.12
1.94 2.26 2.24 2.85 2.16 2.01 1.76 1.91
0.42
0.30
0.61
0.34 0.52 0.30 0.31 0.58 1.68
0.25 0.41 0.22 0.24 0.43 1.29
0.46 0.68 0.41 0.41 0.78 2.19
5.26 0.98
3.74 0.72
7.40 1.34
Source: The 2007 Survey of Adult Transition Health. Model controls for gender, age, race/ethnicity, insurance status in 2001, and household poverty level.
The results from independent living transition outcomes demonstrate that YASHCN with disabilities need more assistance in developing and improving independent living skills. In particular, YASHCN with disabilities reported less control and ability in personal finances. Although youth with disabilities are expected to have lower independent functioning, this finding suggests that they may benefit from receiving more training or school curriculum related to personal budgeting and finance management. In addition, YASHCN with disabilities confront challenges in social inclusion with respect to building friendships and partaking in weekend social activities that has been found in previous studies [44,45]. Future studies could further explore interventions aimed at improving financial decision making, social participation and social support network building for YASHCN with disabilities. Since this study is a secondary data analysis of an existing dataset, there are limitations. In particular, the 2001 NS-CSHCN, from which the survey respondents for the Survey of Adult Transition Health are drawn, was not originally designed as a longitudinal survey. Therefore, comprehensive contact information was not collected from households and therefore families responding to the original 2001 NS-CSHCN may have been lost to follow up for the 2007 SATH. The 2001 NS-CSHCN had 10,933 cases were originally identi-
fied as eligible for follow-up. Although multiple strategies were utilized to find the SATH-eligible young adults, not all eligible participants were found. Since relocation of subjects from 2001 to 2007 was a barrier to follow-up, there may be an overrepresentation of young adults who may have continued to live with their families or have families who have not relocated within the six-year period. Hence, the data collection limitations included sample design, response rate, nonresponse bias, and exclusion of certain demographic variables. Furthermore, the survey population was predominantly white, which limits the generalizability of the findings. The health status, health care coverage, and satisfaction of health care provision of SATH sample population may vary from the young adults who could not be sampled in the survey. SATH administrators located and completed interviews with 1,916 young adults, of which 1,865 cases are included in the SATH data file. The final response rate of 17.5% resulted in a cohort that may not be representative of the general population. It is difficult to ascertain whether the non-response rate affected the data quality. Given the limitation of the response rate and sample design, the study did not conduct analysis using the survey weights. While the results of the study may not be generalizable, they may serve as a basis for exploration for future research studies.
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Although efforts to enhance transition services have been incrementally building over the last, few decades the system of care and services for YASHCN with disabilities still requires improvements, especially as the prevalence of children with chronic health condition and developmental disabilities has been significantly increasing from 1997 to 2008 [46–48]. The exploratory findings of the study offer preliminary insights into the status of transition outcomes with regards to of health, education, and independent living for YASHCN with disabilities. The positive findings in health care transition outcomes suggest that existing health care transition practice guidelines may have enhanced the provider capacity to support these YASHCN and families in navigating the labyrinth of the current health care system [49]. However, the needs of YASHCN with disabilities extend beyond health to opportunities for meaningful post-secondary education or employment options, and assistance in establishing supportive social relationships. The health care transition team for CSHCN should consider expanding goals for transition to include working collaboratively and improving coordination with educators, vocational rehabilitation counselors and independent living specialists in order to foster the positive development of self-sufficient and independent YASHCN with disabilities [50].
Acknowledgments The authors did not receive funding support to conduct this study. The views expressed in this article are those of the authors and do not necessarily reflect the official policies of the U.S. Department of Health and Human Services (HHS) or the Health Resources and Services Administration (HRSA), nor does mention of HHS or HRSA imply endorsement by the U.S. government.
Conflict of interest The authors have no conflict of interest to declare.
References [1]
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2005–2006. Rockville, Maryland: U.S. Department of Health and Human Services, 2007.
[2]
29
National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. [cited 2013 June 11]. Available from www.childhealthdata.org. [3] Bethell CD, Read D, Blumberg SJ, Newacheck PW. What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys. Matern Child Health J. 2008; 12(1): 1-14. [4] McPherson M, Arango P, Fox H, et al. A new definition of children with specialhealth care needs. Pediatrics. 1998; 102: 137-140. [5] Blum RW. Transition to adult health care: setting the stage. J Adolesc Health. 1995; 17(1): 3-5. [6] DeLaet DE. Lost in Translation: Young Adults with Special Health Care Needs. SGIM Forum. 2013; 36(3). [7] Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics. 2002; 110(6 Pt 2): 1307-1314. [8] King G, Tucker MA, Baldwin P, Lowry K, LaPorta J, Martens L. A life needs model of pediatric service delivery: services to support community participation and quality of life for children and youth with disabilities. Phys Occup Ther Pediatr. 2002; 22(2): 53-77. [9] Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children With Special Health Care Needs. Pediatrics. 2005; 115(6): 1562-1568. [10] Strickland BB, van Dyck PC, Kogan MD, Lauver C, Blumberg SJ, Bethell CD, Newacheck PW. Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach. Am J Public Health. 2011; 101(2): 224-31. [11] Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health. 2008; 43(1): 23-29. [12] Rosen DS. Transition from pediatric to adult-oriented health care for the adolescent with chronic illness or disability. Adolesc Med. 1994; 5: 241-8. [13] Young NL, Barden WS, Mills WA, Burke TA, Law M, Boydell K. Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities. Phys Occup Ther Pediatr. 2009; 29(4): 345-61. [14] Björquist E, Nordmark E, Hallström I. Living in transition – experiences of health and well-being and the needs of adolescents with cerebral palsy. Child Care Health Dev. 2014 May 6. [Epub ahead of print]. [15] Americans with Disabilities Act of 1990. 42 U.S.C. §12101 1990. [16] Roebroeck ME, Jahnsen R, Carona C, Kent RM, Chamberlain MA. Adult outcomes and lifespan issues for people with childhood-onset physical disability. Dev Med Child Neurol. 2009; 51: 670-8. [17] Baumer N, Davidson EJ. Supporting a happy, healthy adolescence for young people with Down syndrome and other intellectual disabilities: recommendations for clinicians. Curr Opin Pediatr. 2014; 26(4): 428-34. [18] Blomquist KB, Brown G, Peersen A, Presler EP. Transitioning to independence: challenges for young people with disabilities and their caregivers. Orthop Nurs. 1998; 17(3): 2735. [19] Brouwer S, de Boer MR, Groothoff JW, van der Klink JJ. Expectations from few decades Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Devel-
30
[20]
[21]
[22]
[23]
[24]
[25]
[26]
[27]
[28]
[29] [30]
[31]
[32]
[33]
[34]
S.C. Lin et al. / Transition outcomes for young adults with disabilities opmental Disabilities. J Occup Rehabil. 2014 Jun 17. [Epub ahead of print]. Beresford B. On the road to nowhere? Young disabled people and transition. Child Care Health Dev. 2004 Nov; 30(6): 5817. Chamberlain MA, Kent RM. The needs of young people with disabilities in transition from paediatric to adult services. Eura Medicophys. 2005; 41(2): 111-23. Stewart D, Freeman M, Law M, Healy H, Burke-Gaffney J, Forhan M, Young N, Guenther S. 2013. Transition to adulthood for youth with disabilities: Evidence from the literature. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation. [cited 2013 January 21] Available from: http://cirrie.buffalo.edu/encyclopedia/en/article/110/. The Conference Board, Inc., the Partnership for 21st Century Skills, Corporate Voices for Working Families, and the Society for Human Resource Management. Are they really ready to work? Employers’ perspectives on the basic knowledge and applied skills of new entrants to the 21st century U.S. workforce. [cited 2013, June 3]. Available from: http://www.p21. org/storage/documents/FINAL_REPORT_PDF09-29-06.pdf. O’Connor KS, Brooks KS, Nysse-Carris KL, et al. Design and operation of the Survey of Adult Transition and Health, 2007. National Center for Health Statistics. Vital Health Stat. 1(52). 2011. U.S. Department of Health and Human Services. Centers for Disease Control and Prevention, National Center on Health Statistics. National Survey of Children with Special Health Care Needs. [cited 2014 February 20] Available from http://www.cdc.gov/nchs/slaits/cshcn.htm. van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med. 2004; 158(9): 884-90. Centers for Disease Control and Prevention National Center on Health Statistics. 2007 Survey of Adult Transition and Health. [cited 2012 December 7] Available from http://www. cdc.gov/nchs/slaits/sath.htm. US Department of Health and Human Services Poverty Guidelines. [cited 2012 December 8]. Available from http:// aspe.hhs.gov/poverty/12poverty.shtml. SAS Institute I. SAS/STAT 9.3 User’s Guide. Cary, NC: SAS Publishing, 2011. Antonelli RC, Antonelli DM. Providing a medical home: the cost of care coordination services in a community-based, general pediatric practice. Pediatrics. 2004; 113(5 Suppl): 15228. Scal P, Ireland M. Addressing Transition to Adult Health Care for Adolescents With Special Health Care Needs. Pediatrics. 2005; 115(6): 1607-1612. Kelly AM, Kratz B, Bielski M, Rinehart PM. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics. 2002; 110(6 Pt 2): 13227. Burdo-Hartman WA, Patel DR. Medical home and transition planning for children and youth with special health care needs. Pediatr Clin North Am. 2008; 55(6): 1287-97. Kinne S, Patrick DL, Doyle DL. Prevalence of secondary
conditions among people with disabilities. Am J Public Health. 2004; 94(3): 443-5. [35] Ferrante JM, Balasubramanian BA, Hudson SV, Crabtree BF. Principles of the patient-centered medical home and preventive services delivery. Ann Fam Med. 2010; 8(2): 108-16. [36] Oswald DP, Gilles DL, Cannady MS, Wenzel DB, Willis JH, Bodurtha JN. Youth with special health care needs: Transition to adult health care services. Matern Child Health J. 2012 November 16. [Epub ahead of print]. [37] Okumura MJ, Hersh AO, Hilton JF, Lotstein DS. Change in health status and access to care in young adults with special health care needs: results from the 2007 national survey of adult transition and health. J Adolesc Health. 2013; 52(4): 413-8. [38] Sawicki GS, Whitworth R, Gunn L, Butterfield R, LukensBull K, Wood D. Receipt of health care transition counseling in the National Survey of Adult Transition and Health. Pediatrics. 2011; 128: e521-e529. [39] Wang G, Grembowski D, Watts C. Risk of losing insurance during the transition into adulthood among insured youth with disabilities. Matern Child Health J. 2010; 14(1): 67-74. [40] Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. J Adolesc Health. 2012; 51(3): 213-9. [41] Individuals with Disabilities Education Improvement Act of 2004, 20 U.S.C. §1400 et seq. 2004. [42] Yell ML, Drasgow E, Lowre KA. No Child Left Behind and Students With Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities. 2005; 18(3): 130-139. [43] Katsiyannis A, Zhang D, Ryan JB, Jones, J. High-Stakes Testing and Students with Disabilities Challenges and Promises. Journal of Disability Policy Studies. 2007; 18(3): 160-167. [44] Lindsay S, McPherson AC. Strategies for improving disability awareness and social inclusion of children and young people with cerebral palsy. Child Care Health Dev. 2012; 38(6): 80916. [45] Lindsay S, McPherson AC. Experiences of social exclusion and bullying at school among children and youth with cerebral palsy. Disabil Rehabil. 2012; 34(2): 101-9. [46] Lotstein DS, Ghandour R, Cash A, McGuire E, Strickland B, Newacheck P. Planning for health care transitions: results from the 2005–2006 National Survey of Children With Special Health Care Needs. Pediatrics. 2009; 123(1): e145-52. [47] Van Cleave J, Gortmaker SL, Perrin JM. Dynamics of obesity and chronic health conditions among children and youth. JAMA. 2010; 303: 623-30. [48] Boyle CA, Boulet S, Schieve LA, Cohen RA, Blumberg SJ, Yeargin-Allsopp M, Visser S, Kogan MD.Trends in the prevalence of developmental disabilities in US children, 1997– 2008. Pediatrics. 2011; 127(6): 1034-42. [49] Lemly DC, Weitzman ER, O’Hare K. Advancing healthcare transitions in the medical home: tools for providers, families and adolescents with special healthcare needs. Curr Opin Pediatr. 2013; 25(4): 439-46. [50] Rehm RS, Fuentes-Afflick E, Fisher LT, Chesla CA. Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability. ANS Adv Nurs Sci. 2012; 35(3): E57-72.
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Transition outcomes for young adults with disabilities Sue C. Lina,b,∗ , Mei-Ling Ting Leeb and Terry A. Adirimc
a Bureau of Primary Health Care, Health Resources and Services Administration, US Department of Health and Human Services, Rockville, MD, USA b Department of Epidemiology and Biostatistics, University of Maryland, College Park, MD, USA c Drexel University College of Medicine, Philadelphia, PA, USA
Accepted for publication: 29 September 2014
Abstract. PURPOSE: Transition to adulthood can be very challenging for children with special health care needs (CSHCN) especially for those with disabilities who experience functional limitations in activities at home, in school, and in the community. The study examined the transition outcomes in areas of health, education, and independent living for young adult with special health care needs (YASHCN) with disabilities. METHOD: The study is a secondary data analysis of the 2007 Survey of Adult Transition and Health (SATH). Multivariate logistic regression analysis assessed the association between having disabilities and the transition outcomes. RESULTS: Overall, YASHCN with disabilities reported favorable health related transition outcomes with improved access to primary care, care coordination, and physician engagement in transition discussions and connection to mentors. Furthermore, YASCHN with disabilities had higher odds of receiving Medicaid or other insurance for low income or disabilities as an adult (AOR = 5.26, 95% CI = 3.74, 7.04). However, they were less likely to report having control over personal finances, making friends, and obtaining a high school diploma. CONCLUSION: The findings suggest that YASHCN with disabilities may be among the small proportion of CSHCNs who had a positive transition to adult health care services. However, transition outcomes related to independent living still need more improvements. Keywords: Transition outcome, disabilities, health, independent living
1. Purpose The prevalence estimate of children with special health care needs (CSHCN) in the United States has steadily increased from 12.8% in 2001, to 13.9% in 2005–2006, and most recently to 15.1% in 2009– 2010 [1–3]. The federal Maternal and Child Health Bureau (MCHB) defined CSHCN “as children who have or are at greater risk for a chronic physical, develop∗ Corresponding author: Sue C. Lin, Bureau of Primary Health Care, Health Resources and Services Administration 5600 Fishers Lane, 16W54 Rockville, MD 20857, USA. Tel.: +1 301 443 2923; Fax: +1 301 594 5224; E-mail: [email protected].
mental, behavioral, or emotional condition and who also require more health care-related services beyond that required by typically developing children” [4]. Advances in medical treatments have significantly improved the CSHCN survival into adulthood [5,6]. As more CSHCN become adults, systems of care are needed to provide continuous, age appropriate, and family centered supports [7,8]. However, the percentage of youth with special health care needs receiving the services necessary to effectively and seamlessly transition to adult health care has been very low with only an estimated 41.2% of adolescents between the ages 12–17 years fully meeting MCHB’s health-related transition quality indicator in 2005–2006 [9,10]. Moreover, young adults with special health care needs
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S.C. Lin et al. / Transition outcomes for young adults with disabilities
(YASHCN) who are low income encounter additional challenges of gaps in insurance coverage as well as delayed medical care [11]. For YASHCN with disabilities, the transition to adulthood can be even more challenging than for YASHCN [12–14]. The Americans with Disabilities Act defines an individual with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment [15]. YASHCN with disabilities have an array of health issues such as functional decline, pain, and physical inactivity that are additional hurdles to independence [16,17]. In addition, YASHCN with disabilities face numerous barriers to employment including lack of parental and educator expectations, knowledge of available vocational services, post high school opportunities, and self-advocacy skills [18,19]. Furthermore, YASHCN with disabilities experienced challenges in friendships, social life, and access to quality housing that impact successful transition to adult independent living [20]. Supporting YASHCN with disabilities in becoming independent and active participants in their communities requires closely coordinated services to support health, education, and independent living [21]. The transition to adulthood for YASHCN with disabilities is both a complex phenomenon and a dynamic process [22,23]. In 2007, MCHB funded the Survey of Adult Transition and Health (SATH) to examine the current health care needs and transition experience of YASHCN age 19–23 years whose parents had previously responded to the 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) [24]. Using data from the 2007 SATH, this study compares the transition experience of YASHCN with and without disabilities with regard to health, education, and independent living.
2. Methods 2.1. Description of dataset The 2007 SATH was administered by the Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS) and conducted by the State and Local Area Integrated Telephone Survey (SLAITS) program. The self-reported information collected through SATH sought to advance knowledge
about the health and well-being of YASHCN and the challenges and successes of transitioning into adulthood for those living in English speaking households. The SATH used a follow-back survey design to identify respondents whose parents were originally interviewed in the 2001 NS-CSHCN when the respondents were 14 to 17 years old (10,933 eligible cases). The 2001 NS-CSHCN was supported by MCHB to establish prevalence estimates of CSHCN in the United States and understanding of the health and functional status of CSHCN and their families [25]. Data from NS-CSHCN also provided demographic and socioeconomic characteristics, access to care, satisfaction with care, and impact on the families for CSHCN [26]. Subsequent NS-CSHCN surveys were conducted in 2005– 2006 and 2009–2010. The final sample size in the public use file (PUF) is 1865 completed interviews with YASHCN [27]. Although the SATH PUF contained one interview weight for each sampled young adult, NCHS recommended the consideration of the SATH sample as a convenience sample rather than a random or complex sample because of the sample design, response rate, and the possibility of non-response bias. The detailed design, operation, and methodology of the survey are described elsewhere [20]. The NCHS Research Ethics Review Board approved all data collection procedures. This study was approved for institutional review board (IRB) exemption from the University of Maryland, College Park. 2.2. Variables A YASHCN with disabilities is defined by combined positive responses from parents or guardian to the following three questions regarding disabilities from the 2001 NS-CSHCN: 1) child has limited ability to do things, 2) limited ability is due to medical/ behavioral/other health conditions, and 3) condition has lasted/expected to last twelve months. The sociodemographic variables in the analyses are comprised of age, race/ethnicity (white, black, multiracial and other), gender, insurance status in 2001 (public insurance, private insurance, and uninsured), and household poverty level with four categories including < 100%, 100–199%, 200–399%, and 400% of the federal poverty level (FPL) [28]. The outcomes of interest were binary variables in three transition areas: 1) health care; 2) school; and 3) independent living. The survey questions on transition outcomes related to health care are comprised of the following:
S.C. Lin et al. / Transition outcomes for young adults with disabilities
– Has a usual health care source, usual routine preventive care source, and a personal doctor or nurse; – Health care delayed or forgone in last 12 months; – Gets help arranging or coordinating care or need extra help in arranging care in the past 12 months; – Doctors have discussed how needs might change with age; – Doctors have discussed how to obtain or keep insurance as adults; – Doctors help connect with youth or adult mentors. The survey questions on transition outcomes related to school include the following: – – – –
Received vocational or career training; Obtained high school diploma; Developed transition plan; Participated in transition plan development.
The survey questions on transition outcomes related to independent living included questions on: – – – – – – – –
Choosing how to spend money; Planning weekend activities; Making choices that are important; Making friends; Has general life satisfaction; Receiving social and emotional support; Has more ability to pay for necessities; Living with parents.
Finally, the study also examined health insurance status with the following questions: – Receive Medicaid or other insurance for low income or disabilities; – Has health insurance benefits that meet needs; – Has insurance that allows to see providers as needed; – Pay any money for health care. For survey questions with four response categories of 1) never, 2) sometimes, 3) usually, and 4) always, responses were dichotomized to combine “usually” and “always” responses into one category and “never” and “sometimes” into the other. 2.3. Statistical analyses χ2 statistics assessed the bivariate association between having disabilities and sociodemographic variables of race/ethnicity, gender, household poverty level, age in 2001 and insurance type in 2001. Similarly, bivariate analysis was conducted between having disabilities and the transition outcomes related to
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health care, school, and independent living as well as the health insurance status. Multivariate logistic regression analysis computed adjusted odds ratios (AOR) and 95% confidence intervals (CI) for transition outcomes with significant χ2 statistics from the bivariate analysis while controlling for select individual-level sociodemographic factors mentioned above. SAS version 9.3 (SAS Inc., Cary NC) was used to carry out the statistical analysis [29]. Although the SATH weights have been adjusted for non-response to the SATH interview with demographic information from the 2001 NS-CSHCN, NCHS advised that an extensive analysis of SATH non-response bias has not been conducted [20]. Therefore, the analysis did not use the sampling weights to generate population-based estimates.
3. Results Table 1 summarizes the sociodemographic characteristics of YASHCN with disabilities (N = 413) and those without (N = 1438). The sample population was predominantly white for both YASHCN with and without disabilities. The distribution of age among the two groups closely resembled each other. However, we found differences in gender distribution, household poverty level and insurance type in 2001. Gender was more evenly distributed among YASHCN with disabilities with 52.5% male and 47.5% female. 61% of YASCHN without disabilities were male. 30.4% of YASHCN with disabilities were in families who lived above 400% FPL as compared to 41.3% of YASHCN without disabilities. In addition, 23.3% of YASHCN with disabilities received public insurance benefits in 2001 whereas only 8.2% of YASHCN without disabilities did. In Table 2, the bivariate analysis illustrates the differences between YASHCN with and without disabilities for the three transition outcomes of health care, school, and independent living as well as health insurance status as an adult. Within transition outcomes for health care, YASHCN with disabilities reported a higher percentage and had significant χ2 statistics for the following: 1) Has usual health care source (76.5% vs. 70.2%, p-value: 0.01); 2) Has usual routine preventive care source (84.5% vs. 79.3%, p-value: 0.02); 3) Has a personal doctor or nurse (77.0% vs. 71.1%, p-value: 0.02); 4) Gets help arranging or coordinating care (51.5% vs. 33.6%, p-value: < 0.001); 5) Need extra help in arranging care in the past 12 months
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S.C. Lin et al. / Transition outcomes for young adults with disabilities
Table 1 Descriptive demographic characteristics of transition age young adults with special health care needs (YASHCN) with disabilities as compared to other YASHCN Characteristics Race/ethnicity White Black Multiracial Other Gender Male Female Household poverty level < 100% 100–199% 200–399% 400+% Age in 2001 14 years old 15 years old 16 years old 17 years old Insurance Type in 2001 Private insurance Public insurance Uninsured
YASHCN with disabilities (N = 413) %
YASHCN without disabilities (N = 1438) %
84.0 6.0 3.2 6.8
91.2 4.3 2.5 2.0
52.5 47.5
61.0 39.0
8.0 25.0 36.6 30.4
5.0 13.3 40.4 41.3
26.6 26.4 26.9 20.1
25.9 27.0 25.7 21.4
72.7 23.3 4.0
89.3 8.2 2.5
Chi-square p-value < 0.001
0.002 < 0.001
0.91
< 0.001
Source: 2007 Survey of Adult Transition and Health.
(16.6% vs. 10.7%, p-value: 0.001); 6) Need a referral in past 12 months (32.9% vs. 25.4%, p-value: 0.003); 7) Doctors have discussed how needs might change with age (60.1% vs. 53.8%, p-value: 0.02); and 8) Doctors helped you connect with youth or adult mentors (30.4% vs. 21.3%, p-value: < 0.001). For transition outcome related to school, YASHCN with disabilities reported a statistically significant lower percentage of obtaining high school diploma (82.3% vs. 93.1%, pvalue: < 0.001). In the transition outcome related to independent living, YASHCN with disabilities reported lower percentage across almost all aspects with the exception of living with parents. For health insurance status, YASHCN with disabilities reported a much higher percentage receiving Medicaid or other insurance for low income or disabilities (39.5% vs. 10.1%, p-value: < 0.001) and lower percentage on pay any money for health care (77.2% vs. 82.4%, p-value: 0.02). Table 3 displays the multivariate logistic regression analysis for select survey questions on transition outcomes and health insurance status that had significant chi-square p-values in the bivariate analysis. The referent group is YASHCN without disabilities. Overall, YASHCN with disabilities had increased odds of having an usual health care source (AOR = 1.47, 95% CI = 1.11, 1.94), having a usual routine preventive care source (AOR = 1.63, 95% CI = 1.17, 2.26), having a personal doctor or nurse (AOR = 1.68, 95% CI =
1.26, 2.24), getting help in arranging or coordinating care (AOR = 2.22, 95% CI = 1.73, 2.85), needing extra help arranging care in the past 12 months (AOR = 1.52, 95% CI = 1.07, 2.16), needing a referral in the past 12 months (AOR = 1.54, 95% CI = 1.18, 2.01), having doctors discuss how needs might change with age (AOR = 1.38, 95% CI = 1.08, 1.76), and having doctors help in connecting with youth or adult mentors (AOR = 1.46, 95% CI = 1.12, 1.91). With respect to the transition outcome related to school, YASHCN with disabilities were at decreased odds of obtaining high school diploma (AOR = 0.42, 95% CI = 0.30, 0.61). When examining the transition outcome related to independent living, the analysis indicates negative associations for YASHCN with disabilities on choosing how to spend money (AOR = 0.34, 95% CI = 0.25, 0.46), planning weekend activities (AOR = 0.52, 95% CI = 0.41, 0.68), making choices that are important (AOR = 0.30, 95% CI = 0.22, 0.41), making friends (AOR = 0.31, 95% CI = 0.23, 0.43), and having more ability to pay for necessities (AOR = 0.34, 95% CI = 0.26, 0.45). YASHCN with disabilities had increased odds for living with their parents (AOR = 1.68, 95% CI = 1.29, 2.19). Finally, YASCHN with disabilities had higher odds of receiving Medicaid or other insurance for low income or disabilities as an adult (AOR = 5.26, 95% CI = 3.74, 7.04).
S.C. Lin et al. / Transition outcomes for young adults with disabilities
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Table 2 Observed self-report of transition outcomes of young adults with special health care need (YASHCN) with disabilities as compared to other YASHCN
Transition outcomes related to healthcare Has usual health care source Has usual routine preventive care source Has a personal doctor or nurse Health care delayed/forgone in last 12 months Gets help arranging or coordinating care Need extra help arranging care in past 12 months Need a referral in past 12 months Doctors have discussed how needs might change with age Doctors discussed how to obtain/keep insurance as adults Doctors helped you connect with youth/adult mentors Transition outcomes related to school Receive vocational/career training Obtain high school diploma Develop transition plan Participate in transition plan development Transition outcomes related to independent living Choose how to spend money (usually/always) Plan weekend activities (usually/always) Make choices that are important (usually/always) Make friends (usually/always) Has general life satisfaction (satisfied/very satisfied) Receive social and emotional support (usually/always) Has more ability to pay for necessities Living with parents Health insurance status Receive Medicaid or other insurance for low income/disabilities Has health insurance benefits that meet needs (usually/always) Has insurance that allows to see provider as needed (usually/always) Pay any money for health care
YASHCN with disabilities (N = 413) %
YASHCN without disabilities (N = 1438) %
Chi-square p-value
76.5 84.5 77.0 28.3 51.5 16.6 32.9 60.1 53.8 30.4
70.2 79.3 71.1 26.8 33.6 10.7 25.4 53.8 52.7 21.3
0.01 0.02 0.02 0.57 < 0.001 0.001 0.003 0.02 0.70 < 0.001
59.1 82.3 62.9 85.4
59.4 93.1 62.2 89.5
0.91 < 0.001 0.79 0.07
72.9 61.9 74.0 65.5 93.4 90.1 19.4 71.4
89.7 77.2 91.3 85.5 95.6 89.1 31.2 57.3
< 0.001 < 0.001 < 0.001 < 0.001 0.06 0.59 < 0.001 < 0.001
39.5 70.5 75.7 77.2
10.1 73.6 77.5 82.4
< 0.001 0.22 0.45 0.02
Source: The 2007 Survey of Adult Transition Health.
4. Conclusion This study found both positive and negative results in the transition experience of YASHCN with disabilities. Overall, YASHCN with disabilities reported favorable outcomes in health-related transition with improved access to primary care, care coordination, and physician engagement in transition discussions and connection to mentors. These findings may be reflective of healthcare system continual efforts towards medical home transformation that include provision of family-centered care and effective care coordination [30–33]. Access to a usual source of care with enhanced care coordination could be beneficial in their receipt of more comprehensive care that includes prevention of secondary conditions [34,35]. The increased odds of receiving Medicaid benefits and other insurance for low income or disabilities for YASHCN with disabilities may suggest that they may be among the small proportion of CSHCNs who received pub-
lic health insurance benefits as adults. As a result, they may not have experienced significant deterioration in access to care as they entered adulthood [36–39]. However, these YASHCN with disabilities continued to need additional help and referral for health care services in adulthood, which is expected given their complex health conditions and ongoing medical needs [40]. For the transition outcome related to school, YASHCN with disabilities had much lower odds of obtaining a high school diploma. This may be a result in the passage of the No Child Left Behind Act (NCLB) of 2001, which emphasized statewide assessment, adequate yearly progress in educational outcomes, and highly qualified teachers for general and special education [41,42]. Students with disabilities have historically performed poorly on state educational assessments [43]. The educational assessment requirements of NCLB for graduation may have had negative implications for YASHCN with disabilities by limiting opportunities to obtain their high school diploma.
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Table 3 Adjusted odds ratio (AOR) for selected components of transition outcomes for young adults with special health care need (YASHCN) with disabilities AOR Transition outcomes related to healthcare Has usual health care source Has usual routine preventive care source Has a personal doctor or nurse Gets help arranging or coordinating care Need extra help arranging care in past 12 months Need a referral in past 12 months Doctors have discussed how needs might change with age Doctors helped you connect with youth/adult mentors Transition outcomes related to school Obtain high school diploma Transition outcomes related to independent living Choose how to spend money (usually/always) Plan weekend activities (usually/always) Make choices that are important (usually/always) Make friends (usually/always) Has more ability to pay for necessities Living with parents Health insurance status and adequacy Receive Medicaid or other insurance for low income/disabilities Pay any money for health care
YASHCN with disabilities 95% Confidence Interval
1.47 1.63 1.68 2.22 1.52 1.54 1.38 1.46
1.11 1.17 1.26 1.73 1.07 1.18 1.08 1.12
1.94 2.26 2.24 2.85 2.16 2.01 1.76 1.91
0.42
0.30
0.61
0.34 0.52 0.30 0.31 0.58 1.68
0.25 0.41 0.22 0.24 0.43 1.29
0.46 0.68 0.41 0.41 0.78 2.19
5.26 0.98
3.74 0.72
7.40 1.34
Source: The 2007 Survey of Adult Transition Health. Model controls for gender, age, race/ethnicity, insurance status in 2001, and household poverty level.
The results from independent living transition outcomes demonstrate that YASHCN with disabilities need more assistance in developing and improving independent living skills. In particular, YASHCN with disabilities reported less control and ability in personal finances. Although youth with disabilities are expected to have lower independent functioning, this finding suggests that they may benefit from receiving more training or school curriculum related to personal budgeting and finance management. In addition, YASHCN with disabilities confront challenges in social inclusion with respect to building friendships and partaking in weekend social activities that has been found in previous studies [44,45]. Future studies could further explore interventions aimed at improving financial decision making, social participation and social support network building for YASHCN with disabilities. Since this study is a secondary data analysis of an existing dataset, there are limitations. In particular, the 2001 NS-CSHCN, from which the survey respondents for the Survey of Adult Transition Health are drawn, was not originally designed as a longitudinal survey. Therefore, comprehensive contact information was not collected from households and therefore families responding to the original 2001 NS-CSHCN may have been lost to follow up for the 2007 SATH. The 2001 NS-CSHCN had 10,933 cases were originally identi-
fied as eligible for follow-up. Although multiple strategies were utilized to find the SATH-eligible young adults, not all eligible participants were found. Since relocation of subjects from 2001 to 2007 was a barrier to follow-up, there may be an overrepresentation of young adults who may have continued to live with their families or have families who have not relocated within the six-year period. Hence, the data collection limitations included sample design, response rate, nonresponse bias, and exclusion of certain demographic variables. Furthermore, the survey population was predominantly white, which limits the generalizability of the findings. The health status, health care coverage, and satisfaction of health care provision of SATH sample population may vary from the young adults who could not be sampled in the survey. SATH administrators located and completed interviews with 1,916 young adults, of which 1,865 cases are included in the SATH data file. The final response rate of 17.5% resulted in a cohort that may not be representative of the general population. It is difficult to ascertain whether the non-response rate affected the data quality. Given the limitation of the response rate and sample design, the study did not conduct analysis using the survey weights. While the results of the study may not be generalizable, they may serve as a basis for exploration for future research studies.
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Although efforts to enhance transition services have been incrementally building over the last, few decades the system of care and services for YASHCN with disabilities still requires improvements, especially as the prevalence of children with chronic health condition and developmental disabilities has been significantly increasing from 1997 to 2008 [46–48]. The exploratory findings of the study offer preliminary insights into the status of transition outcomes with regards to of health, education, and independent living for YASHCN with disabilities. The positive findings in health care transition outcomes suggest that existing health care transition practice guidelines may have enhanced the provider capacity to support these YASHCN and families in navigating the labyrinth of the current health care system [49]. However, the needs of YASHCN with disabilities extend beyond health to opportunities for meaningful post-secondary education or employment options, and assistance in establishing supportive social relationships. The health care transition team for CSHCN should consider expanding goals for transition to include working collaboratively and improving coordination with educators, vocational rehabilitation counselors and independent living specialists in order to foster the positive development of self-sufficient and independent YASHCN with disabilities [50].
Acknowledgments The authors did not receive funding support to conduct this study. The views expressed in this article are those of the authors and do not necessarily reflect the official policies of the U.S. Department of Health and Human Services (HHS) or the Health Resources and Services Administration (HRSA), nor does mention of HHS or HRSA imply endorsement by the U.S. government.
Conflict of interest The authors have no conflict of interest to declare.
References [1]
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2005–2006. Rockville, Maryland: U.S. Department of Health and Human Services, 2007.
[2]
29
National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. [cited 2013 June 11]. Available from www.childhealthdata.org. [3] Bethell CD, Read D, Blumberg SJ, Newacheck PW. What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys. Matern Child Health J. 2008; 12(1): 1-14. [4] McPherson M, Arango P, Fox H, et al. A new definition of children with specialhealth care needs. Pediatrics. 1998; 102: 137-140. [5] Blum RW. Transition to adult health care: setting the stage. J Adolesc Health. 1995; 17(1): 3-5. [6] DeLaet DE. Lost in Translation: Young Adults with Special Health Care Needs. SGIM Forum. 2013; 36(3). [7] Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics. 2002; 110(6 Pt 2): 1307-1314. [8] King G, Tucker MA, Baldwin P, Lowry K, LaPorta J, Martens L. A life needs model of pediatric service delivery: services to support community participation and quality of life for children and youth with disabilities. Phys Occup Ther Pediatr. 2002; 22(2): 53-77. [9] Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children With Special Health Care Needs. Pediatrics. 2005; 115(6): 1562-1568. [10] Strickland BB, van Dyck PC, Kogan MD, Lauver C, Blumberg SJ, Bethell CD, Newacheck PW. Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach. Am J Public Health. 2011; 101(2): 224-31. [11] Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health. 2008; 43(1): 23-29. [12] Rosen DS. Transition from pediatric to adult-oriented health care for the adolescent with chronic illness or disability. Adolesc Med. 1994; 5: 241-8. [13] Young NL, Barden WS, Mills WA, Burke TA, Law M, Boydell K. Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities. Phys Occup Ther Pediatr. 2009; 29(4): 345-61. [14] Björquist E, Nordmark E, Hallström I. Living in transition – experiences of health and well-being and the needs of adolescents with cerebral palsy. Child Care Health Dev. 2014 May 6. [Epub ahead of print]. [15] Americans with Disabilities Act of 1990. 42 U.S.C. §12101 1990. [16] Roebroeck ME, Jahnsen R, Carona C, Kent RM, Chamberlain MA. Adult outcomes and lifespan issues for people with childhood-onset physical disability. Dev Med Child Neurol. 2009; 51: 670-8. [17] Baumer N, Davidson EJ. Supporting a happy, healthy adolescence for young people with Down syndrome and other intellectual disabilities: recommendations for clinicians. Curr Opin Pediatr. 2014; 26(4): 428-34. [18] Blomquist KB, Brown G, Peersen A, Presler EP. Transitioning to independence: challenges for young people with disabilities and their caregivers. Orthop Nurs. 1998; 17(3): 2735. [19] Brouwer S, de Boer MR, Groothoff JW, van der Klink JJ. Expectations from few decades Different Perspectives on Future Work Outcome of Young Adults with Intellectual and Devel-
30
[20]
[21]
[22]
[23]
[24]
[25]
[26]
[27]
[28]
[29] [30]
[31]
[32]
[33]
[34]
S.C. Lin et al. / Transition outcomes for young adults with disabilities opmental Disabilities. J Occup Rehabil. 2014 Jun 17. [Epub ahead of print]. Beresford B. On the road to nowhere? Young disabled people and transition. Child Care Health Dev. 2004 Nov; 30(6): 5817. Chamberlain MA, Kent RM. The needs of young people with disabilities in transition from paediatric to adult services. Eura Medicophys. 2005; 41(2): 111-23. Stewart D, Freeman M, Law M, Healy H, Burke-Gaffney J, Forhan M, Young N, Guenther S. 2013. Transition to adulthood for youth with disabilities: Evidence from the literature. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation. [cited 2013 January 21] Available from: http://cirrie.buffalo.edu/encyclopedia/en/article/110/. The Conference Board, Inc., the Partnership for 21st Century Skills, Corporate Voices for Working Families, and the Society for Human Resource Management. Are they really ready to work? Employers’ perspectives on the basic knowledge and applied skills of new entrants to the 21st century U.S. workforce. [cited 2013, June 3]. Available from: http://www.p21. org/storage/documents/FINAL_REPORT_PDF09-29-06.pdf. O’Connor KS, Brooks KS, Nysse-Carris KL, et al. Design and operation of the Survey of Adult Transition and Health, 2007. National Center for Health Statistics. Vital Health Stat. 1(52). 2011. U.S. Department of Health and Human Services. Centers for Disease Control and Prevention, National Center on Health Statistics. National Survey of Children with Special Health Care Needs. [cited 2014 February 20] Available from http://www.cdc.gov/nchs/slaits/cshcn.htm. van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med. 2004; 158(9): 884-90. Centers for Disease Control and Prevention National Center on Health Statistics. 2007 Survey of Adult Transition and Health. [cited 2012 December 7] Available from http://www. cdc.gov/nchs/slaits/sath.htm. US Department of Health and Human Services Poverty Guidelines. [cited 2012 December 8]. Available from http:// aspe.hhs.gov/poverty/12poverty.shtml. SAS Institute I. SAS/STAT 9.3 User’s Guide. Cary, NC: SAS Publishing, 2011. Antonelli RC, Antonelli DM. Providing a medical home: the cost of care coordination services in a community-based, general pediatric practice. Pediatrics. 2004; 113(5 Suppl): 15228. Scal P, Ireland M. Addressing Transition to Adult Health Care for Adolescents With Special Health Care Needs. Pediatrics. 2005; 115(6): 1607-1612. Kelly AM, Kratz B, Bielski M, Rinehart PM. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics. 2002; 110(6 Pt 2): 13227. Burdo-Hartman WA, Patel DR. Medical home and transition planning for children and youth with special health care needs. Pediatr Clin North Am. 2008; 55(6): 1287-97. Kinne S, Patrick DL, Doyle DL. Prevalence of secondary
conditions among people with disabilities. Am J Public Health. 2004; 94(3): 443-5. [35] Ferrante JM, Balasubramanian BA, Hudson SV, Crabtree BF. Principles of the patient-centered medical home and preventive services delivery. Ann Fam Med. 2010; 8(2): 108-16. [36] Oswald DP, Gilles DL, Cannady MS, Wenzel DB, Willis JH, Bodurtha JN. Youth with special health care needs: Transition to adult health care services. Matern Child Health J. 2012 November 16. [Epub ahead of print]. [37] Okumura MJ, Hersh AO, Hilton JF, Lotstein DS. Change in health status and access to care in young adults with special health care needs: results from the 2007 national survey of adult transition and health. J Adolesc Health. 2013; 52(4): 413-8. [38] Sawicki GS, Whitworth R, Gunn L, Butterfield R, LukensBull K, Wood D. Receipt of health care transition counseling in the National Survey of Adult Transition and Health. Pediatrics. 2011; 128: e521-e529. [39] Wang G, Grembowski D, Watts C. Risk of losing insurance during the transition into adulthood among insured youth with disabilities. Matern Child Health J. 2010; 14(1): 67-74. [40] Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. J Adolesc Health. 2012; 51(3): 213-9. [41] Individuals with Disabilities Education Improvement Act of 2004, 20 U.S.C. §1400 et seq. 2004. [42] Yell ML, Drasgow E, Lowre KA. No Child Left Behind and Students With Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities. 2005; 18(3): 130-139. [43] Katsiyannis A, Zhang D, Ryan JB, Jones, J. High-Stakes Testing and Students with Disabilities Challenges and Promises. Journal of Disability Policy Studies. 2007; 18(3): 160-167. [44] Lindsay S, McPherson AC. Strategies for improving disability awareness and social inclusion of children and young people with cerebral palsy. Child Care Health Dev. 2012; 38(6): 80916. [45] Lindsay S, McPherson AC. Experiences of social exclusion and bullying at school among children and youth with cerebral palsy. Disabil Rehabil. 2012; 34(2): 101-9. [46] Lotstein DS, Ghandour R, Cash A, McGuire E, Strickland B, Newacheck P. Planning for health care transitions: results from the 2005–2006 National Survey of Children With Special Health Care Needs. Pediatrics. 2009; 123(1): e145-52. [47] Van Cleave J, Gortmaker SL, Perrin JM. Dynamics of obesity and chronic health conditions among children and youth. JAMA. 2010; 303: 623-30. [48] Boyle CA, Boulet S, Schieve LA, Cohen RA, Blumberg SJ, Yeargin-Allsopp M, Visser S, Kogan MD.Trends in the prevalence of developmental disabilities in US children, 1997– 2008. Pediatrics. 2011; 127(6): 1034-42. [49] Lemly DC, Weitzman ER, O’Hare K. Advancing healthcare transitions in the medical home: tools for providers, families and adolescents with special healthcare needs. Curr Opin Pediatr. 2013; 25(4): 439-46. [50] Rehm RS, Fuentes-Afflick E, Fisher LT, Chesla CA. Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability. ANS Adv Nurs Sci. 2012; 35(3): E57-72.
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