Although the transition to adulthood for youth with special health care needs (YSHCN) has been gathering attention, the impact of racial and ethnic disparities on this process has been relatively unexamined. In this review, we explore evidence of disparities in the transition to adulthood for YSHCN, which is important because the problems that YSHCN face in transitioning to adulthood are, in large part, caused by interrupted access to high-quality health care and minority YSHCN and adults have many well-described gaps in access to quality care. Understanding the disparities in the transition process is essential to ensure that interventions designed to improve this transition will meet the needs of this high-risk population. We reviewed research on transition preparation and outcomes for YSHCN to find evidence of racial and ethnic disparities. The results of our review indicate that few YSHCN are receiving adequate transition preparation, and some evidence indicates that this situation is worse for racial and ethnic minorities. Furthermore, young adults, including YSHCN, have poorer access to care than children. Moreover, at some ages, this age-related decline in access is worse for Hispanic and black young adults than for others. Finally, low-income YSHCN are at higher risk than other YSHCN of experiencing gaps in access to care as they age into adulthood. Possible causes of racial and ethnic disparities in health care transitions are related to insurance, living in low-income communities, and sociocultural factors. Significant efforts in research, policy change, advocacy, and education of providers and families are needed to ensure optimal transition preparation and adult outcomes for YSHCN from all racial and ethnic backgrounds.
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December 2010
Supplement Articles|
December 01 2010
The Transition to Adult Health Care for Youth With Special Health Care Needs: Do Racial and Ethnic Disparities Exist?
Debra S. Lotstein, MD, MPH;
aCenter for Healthier Children, Families and Communities, Department of Pediatrics, David Geffen School of Medicine, University of California, Los Angeles, California;
bRand Health, Santa Monica, California;
Address correspondence to Debra S. Lotstein, MD, MPH, Division of Child Health Policy, UCLA Center for Healthier Children, Families and Communities, David Geffen School of Medicine at UCLA, 10990 Wilshire Boulevard, Suite 900, Los Angeles, CA 90024. E-mail: dlotstein@mednet.ucla.edu
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Alice A. Kuo, MD, PhD;
Alice A. Kuo, MD, PhD
aCenter for Healthier Children, Families and Communities, Department of Pediatrics, David Geffen School of Medicine, University of California, Los Angeles, California;
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Bonnie Strickland, PhD;
Bonnie Strickland, PhD
cMaternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland; and
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Fan Tait, MD
Fan Tait, MD
dAmerican Academy of Pediatrics, Elk Grove Village, Illinois
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Address correspondence to Debra S. Lotstein, MD, MPH, Division of Child Health Policy, UCLA Center for Healthier Children, Families and Communities, David Geffen School of Medicine at UCLA, 10990 Wilshire Boulevard, Suite 900, Los Angeles, CA 90024. E-mail: dlotstein@mednet.ucla.edu
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
Pediatrics (2010) 126 (Supplement_3): S129–S136.
Article history
Accepted:
September 01 2010
Citation
Debra S. Lotstein, Alice A. Kuo, Bonnie Strickland, Fan Tait; The Transition to Adult Health Care for Youth With Special Health Care Needs: Do Racial and Ethnic Disparities Exist?. Pediatrics December 2010; 126 (Supplement_3): S129–S136. 10.1542/peds.2010-1466F
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As a provider of services for children and youth with special needs from underserved communities for the past 22 years, I want to share my observations about issues with transition planning for CYSHCN from underserved communities. 1. Lack of understanding of the condition, management options and outcomes. Many factors result in the lack of understanding – level of education, and functional and health literacy in English and native language. Many parents are unable to comprehend the nature of the illness despite being informed multiple times using professional interpreters and written sheets in their primary language. The parents depend entirely on the professionals for information because of their inability to access healthcare information on their own, either because of lack access to Internet and print resources at their level of understanding of education and inability to comprehend the material. Few professionals are trained in explaining and confirming what has been understood in clinical situations to individuals with low literacy skills, especially to those with little or no proficiency in English. Moreover parents may verbalize understanding but may have understood a few disjointed pieces. Time and reimbursement are always a constraint. 2. Lack of autonomy or culture of dependency. While autonomy is the standard in middle class communities, parents in underserved communities expect leadership from professionals. They expect someone to hold their hand and walk them through at every step of the way. The lack of self advocacy skills and inability to articulate what is that they want contributes to poor services. 3. Unstable lives. Many families struggle with survival issues on a daily basis, housing, immigration, parental psychopathology, incarceration, marital issues, job issues and flow of income. Because of these reasons, many live on a day to day basis with little opportunity to understand and follow a management plan for a chronic condition. 4. Failure of the agencies that serve children with special healthcare needs to communicate what they offer and the process to obtain what they offer. For example, state developmental disability organizations have complex eligibility rules that few parents in underserved communicate understand, let alone are able to negotiate.
A comprehensive approach to identify and surmount the barriers to adequate transitioning services rather than tautological reiteration that transition services for children with special needs are inadequate, is required. The barriers and steps can be classified as 1. Cognitive – Can the parent really understand the nature of the condition and take a leading role in transition planning? Her education and intellectual level and emotional state. Her cultural values. Does she value transition and other services that are customary in the USA? 2. Linguistic – If the family is not fluent in English, can we identify and provide a culturally and linguistically congruent advocate/leader for the child and the family? 3. Social – Is the family stable socially, fiscally and demographically. In a two parent family, are both parents understand and agree with the transition plan? In a grandmother-as-parent family, does the grandmother have the physical, cognitive and linguistic ability to take a leading role in transitioning? 4. Systemic – Has the school identified a key person who will plan and lead transitioning process? Have the post school agencies been identified and contacted for eligibility determination and a key contact identified at these agencies?
Vidya Bhushan Gupta, MD, MPH, FAAP Professor of Clinical Pediatrics New York Medical College Bhushan07627@yahoo.com (212) 423-7329
Conflict of Interest:
None declared