August 13, 2019 - Regulations.gov

August 13, 2019 VIA ELECTRONIC SUBMISSION Secretary Alex Azar Department of Health and Human Services Hubert H. Humphrey Building, Room 509F, 200 Independence Avenue SW, Washington, DC 20201 RE: HHS-OCR-2019-0007: Nondiscrimination in Health and Health Education Programs or Activities Dear Secretary Azar, On behalf of the American Academy of Pediatrics (AAP), a non-profit professional organization of 67,000 primary care pediatricians, pediatric medical subspecialists, and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents, and young adults, and the Society for Adolescent Health and Medicine (SAHM), a multidisciplinary organization that promotes optimal health, well-being, and equity for all adolescents and young adults by supporting adolescent health and medicine professionals through the advancement of clinical practice, care delivery, research, advocacy, and professional development, we write to express strong opposition to the proposed rule entitled “Nondiscrimination in Health and Health Education Programs or Activities” by the Department of Health and Human Services (HHS), the Centers for Medicare & Medicaid Services (CMS), and the Office for Civil Rights (OCR) (collectively, “the Department”). Many children face discrimination in health care systems and settings that can impede their ability to access the services they need for healthy development. Such limited access to comprehensive, developmentally appropriate care poses a barrier for children to thrive throughout their lives. For example, the impact of discrimination in childhood years has been linked to toxic stress, which compounded over time predisposes them to a higher likelihood of chronic disease in adulthood and other long-term negative health outcomes.1 While the Department proposes to revise the regulation with the justification that it would “better comply with the mandates of Congress, address legal concerns, relieve billions of dollars in undue regulatory burdens, further substantive compliance, reduce confusion, and clarify the scope of Section 1557 in keeping with pre-existing civil rights statutes and regulations,” it is clear that end result of the proposed changes would be to reduce the number and type of entities required to comply with Section 1557’s non-discrimination protections. The 2016 rule removed barriers to health care for our nation’s children and adolescents. If finalized, these changes would have the opposite effect.

1 https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-health/interventions-resources/discrimination#5

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The AAP and SAHM strongly oppose the proposed rule, which would severely threaten access to care for millions of children and adolescents, including those that identify as LGBTQ, those with limited English proficiency, and those who have sought or may seek comprehensive reproductive health services. Despite civil rights protections established in statute, the proposed rule could have grave consequences through the limited definitions of discrimination, the narrowing of covered entities, and the changes to enforcement. As such, we urge the Department to rescind the proposed rule in its entirety and leave the 2016 final rule in place. Our comments include numerous citations to supporting research, including direct links to the research for the benefit of HHS in reviewing our comments. We direct HHS to each of the studies cited and made available to the agency through active hyperlinks, and we request that the full text of each of the studies cited, along with the full text of our comments, be considered part of the administrative record in this matter for purposes of the Administrative Procedure Act. Our specific comments are below.

Discrimination on the Basis of Sex, Gender Identity, and Sexual Orientation

The AAP and SAHM strive to improve health care access and eliminate disparities for children and teenagers who identify as lesbian, gay, bisexual, transgender, or questioning (LGBTQ) of their sexual or gender identity.23 Despite some advances in public awareness and legal protections, youth who identify as LGBTQ continue to face disparities that stem from multiple sources, including inequitable laws and policies, societal discrimination, and a lack of access to quality health care, including mental health care. Such challenges are often more intense for youth who do not conform to social expectations and norms regarding gender.

Youth who identify as transgender and gender diverse (TGD) face unique health disparities.4 These youth often confront stigma and discrimination, which contribute to feelings of rejection and isolation that can adversely affect physical and emotional well-being. Youth who identify as TGD experience disproportionately high rates of homelessness, physical violence at home and in the community, substance abuse, and high-risk sexual behaviors.5,6 Among the 3 million HIV testing events that were reported in 2015, the highest percentages of new infections were among women who identified as transgender, and these women were also at particular risk for not knowing their HIV status.7

In addition to societal challenges, youth who identify as TGD face several barriers within the health care system, especially regarding access to care. One study from the National Center for Transgender Equality

2 Recommendations for Promoting the Health and Well-Being of Lesbian, Gay, Bisexual, and Transgender Adolescents: A Position Paper of the Society for Adolescent Health and Medicine.” Journal of Adolescent Health 52, no. 4 (2013): 506–10. doi:10.1016/j.jadohealth.2013.01.015 https://www.jahonline.org/article/S1054-139X%2813%2900057-8/fulltext 3 Rafferty J. Ensuring Comprehensive Care and Support for Transgender and Gender-Diverse Children and Adolescents. Pediatrics. 2018;142(4). https://pediatrics.aappublications.org/content/142/4/e20182162 4 Ibid. 5 Tishelman AC, Kaufman R, Edwards-Leeper L, Mandel FH, Shumer DE, Spack NP. Serving transgender youth: challenges, dilemmas and clinical examples. Prof Psychol Res Pr. 2015;46(1):37–45pmid:26807001 6 Adelson SL; American Academy of Child and Adolescent Psychiatry (AACAP) Committee on Quality Issues (CQI). Practice parameter on gay, lesbian, or bisexual sexual orientation, gender nonconformity, and gender discordance in children and adolescents. J Am Acad Child Adolesc Psychiatry. 2012;51(9):957–974pmid:22917211 7 Herbst JH, Jacobs ED, Finlayson TJ, McKleroy VS, Neumann MS, Crepaz N; HIV/AIDS Prevention Research Synthesis Team. Estimating HIV prevalence and risk behaviors of transgender persons in the United States: a systematic review. AIDS Behav. 2008;12(1):1–17pmid:17694429

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found that approximately 25% of individuals who identified as transgender were denied insurance coverage because of being transgender.8 In 2012, a large gender center in Boston, Massachusetts, reported that most young patients who identified as transgender and were deemed appropriate candidates for recommended gender care were unable to obtain it because of such denials, which were based on the premise that gender dysphoria was a mental disorder, not a physical one, and that treatment was not medically or surgically necessary.9

This evidence of discrimination against children and youth who identify as LGBTQ led the Academy to support the 2016 rule's prohibitions on discrimination on the basis of sex, which includes sex stereotyping and gender identity in the definition of sex discrimination. Prior to the finalization of the 2016 rule, the AAP also urged HHS to explicitly include protections based on sexual orientation as well as clarify protections for individuals with non-binary gender identities.10 Protections against discrimination based on sexual orientation and gender identity align with the AAP policy to provide youth with access to comprehensive gender-affirming and developmentally appropriate health care.

The Department proposes to remove gender identity and sex stereotyping from the definition of prohibited sex-based discrimination, which could allow health care providers to refuse to provide care to individuals who are transgender or who do not conform to traditional sex stereotypes. This would drastically exacerbate the stark inequities that already exist for youth who identify as TGD as it relates to access to care. This practice would only increase stigma, prolong gender dysphoria, and worsen already poor mental health outcomes. Furthermore, it may also lead patients to seek nonmedically supervised treatments that are potentially dangerous.

Moreover, the proposed rule would no longer prohibit covered entities from denying, limiting, or imposing additional cost-sharing for services that are ordinarily or exclusively available to one sex or gender when those services are sought by an individual of a different sex or gender. The proposal would also eliminate the provision that prohibits a health plan from categorically or automatically excluding or limiting coverage for health services related to gender transition. The rollback of these protections could have a devastating impact on access to medically necessary services for youth who identify as TGD and adversely affect self-esteem and contribute to the perception that they are undervalued by society and the health care system. Furthermore, insurance denials can reinforce a socioeconomic divide between those who can finance the high costs of uncovered care and those who cannot.

To illustrate the impact of such discrimination on children, a pediatrician from Arizona shared the experience of one of his transgender patients. After expressing a male gender identity at the age of 9, the boy was referred by his former physician to a psychiatrist who offered conversion therapy. The experience worsened the child’s mental health issues and depression until his mother pulled him out and started to affirm his identity. When the physician refused to use the patient’s preferred pronouns or call him by his new name, the family had to find a new provider. Later, when the patient needed medication to support his development through puberty, the family was repeatedly denied by his Medicaid provider. When the family took legal action, the patient prevailed in the case thanks to the strong protections outlined in Section 1557.

8 James SE, Herman JL, Rankin S, Keisling M, Mottet L, Anafi M. The Report of the 2015 U.S. Transgender Survey. Washington, DC: National Center for Transgender Equality; 2016 9 Edwards-Leeper L, Spack NP. Psychological evaluation and medical treatment of transgender youth in an interdisciplinary “Gender Management Service” (GeMS) in a major pediatric center. J Homosex. 2012;59(3):321–336pmid:22455323 10 https://downloads.aap.org/DOFA/1557%20comments%20final.pdf

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If finalized, this proposed rule would severely threaten TGD patients’ access to all forms of health care, including patients like this boy in Arizona. The rule would create confusion among patients and providers about their rights and obligations and would promote discrimination. The proposed rule would encourage hospitals to deny care to people who identify as TGD and enable insurance companies to deny individuals who identify as transgender coverage for health care services that they cover for those who identify as cisgender.

Furthermore, the proposed rule opens the door to discrimination on the basis of pregnancy termination or other pregnancy-related status, creating inappropriate barriers to realizing optimal sexual and reproductive health for adolescents and young adults. Ensuring that adolescents have access to comprehensive health care, including reproductive health care, has been a long-standing objective of our organizations. Timely access to medical care is especially important for pregnant teenagers because of the significant medical, personal, and social consequences of adolescent childbearing. The AAP and SAHM strongly advocate for the prevention of unintended adolescent pregnancy by supporting comprehensive health and sexuality education,1112 abstinence, and the use of effective contraception1314 by sexually active youth. We strongly support minors' access to all medical options regarding undesired pregnancy, including the right to obtain an abortion, and the right to access care unhindered by discrimination on the basis of their reproductive health decisions.

The 2016 rule is the product of a lengthy process of deliberation and public input. The rule was developed over the course of six years of study and following two comment periods, with more than 25,000 comments from stakeholders, including the Academy, which were overwhelmingly supportive of inclusion of protections against discrimination based on sex stereotyping and gender identity. HHS engaged stakeholders through listening sessions, participation in conferences, and other outreach prior to taking regulatory action.

The AAP and SAHM strive to improve health care access and eliminate disparities for children and teenagers including those who identify as LGBTQ and those who seek the full spectrum of reproductive health options. This proposed rule is in direct contradiction with that mission.

Explicit Religious Exemptions

The AAP and SAHM collectively represent nearly 70,000 members of all faiths and serve children and families of all faiths. The free exercise of religion is an important societal value, which must be balanced against other important societal values, such as protecting children from serious harm and ensuring child health and well-being. As outlined in previous comments regarding “Protecting Statutory Conscience Rights in Health Care,” the AAP urges HHS to ensure that health care providers follow evidence-based or evidence-informed practices that facilitate optimal access to services that support healthy children and families.15

We are concerned about the implications of the proposed rule, which would allow discrimination against children, adolescents, and young adults when a health care provider or other covered entity uses religious beliefs as justification to deny, delay, or discourage patients from receiving needed health care services. This

11 https://pediatrics.aappublications.org/content/138/2/e20161348 12 Improving Knowledge About, Access to, and Utilization of Long-Acting Reversible Contraception Among Adolescents and Young Adults.” Journal of Adolescent Health 60, no. 4 (2017): 472–74. doi:10.1016/j.jadohealth.2017.01.010. https://www.jahonline.org/article/S1054-139X(17)30053-8/fulltext 13 https://pediatrics.aappublications.org/content/134/4/e1244 14 Improving Knowledge About, Access to, and Utilization of Long-Acting Reversible Contraception Among Adolescents and Young Adults.” Journal of Adolescent Health 60, no. 4 (2017): 472–74. doi:10.1016/j.jadohealth.2017.01.010. https://www.jahonline.org/article/S1054-139X%2814%2900052-4/fulltext 15https://downloads.aap.org/DOFA/AAP%20Comments%20HHS%20Conscience%20Protections%20NPRM%20Final_March%202018.pdf

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could place patients at risk of serious or life-threatening outcomes in emergencies and other circumstances where the individual’s choice of health care provider is limited. For instance, the proposed rule may allow a health care provider to refuse care to an adolescent who seeks basic information on reproductive health, such as the routine use of contraception for pregnancy prevention, simply because the provider objects to such care. Situations such as these may be more likely to occur because the proposed rule raises more questions about nondiscrimination protections and exemptions than it answers.

By permitting sex discrimination based on a provider's religious beliefs, the proposed rule hinders the delivery of reproductive health care aligned with clinical guidelines and the recommendations of major professional medical organizations, including the AAP. As such, the AAP and SAHM strongly object to the blanket religious exemptions proposed by HHS. Allowing religious exemptions as the rule proposes will discriminate against women seeking necessary reproductive health care services. Any such exemption would be contrary to Congressional intent and the express purpose of Section 1557 and has the potential to cause great harm to our patients.

Rollback of Language Access Requirements

Immigrant children or children with immigrant parents, groups that face persistent discrimination in accessing health care, represent the fastest growing segment of the US population. One in every 4 children in the United States, approximately 18.6 million children, lives in an immigrant family.16 Children of immigrant families are nearly twice as likely to be uninsured compared to children of nonimmigrant families.

Even when immigrant children and families can access health care providers, they face further obstacles when language barriers prevent effective communication between pediatricians, children, and families on medical issues. Although many immigrant children speak English, their parents may not, creating a barrier that can prevent families from accessing needed health services and/or causing inadequate communication with health care providers. Without access to qualified medical interpreters in health care settings, language barriers can place English-speaking children in the difficult position of interpreting between health care providers and their family members.17

The Academy has previously recommended that all health facilities have access to trained interpreter services and that CMS require Medicaid to provide full payment for these services for patients with LEP.18 Similarly, we strongly supported the 2016 rule’s specific requirements to ensure meaningful access for individuals with limited English proficiency because they help to prevent discrimination and improve the quality of care for children and families. When in-person interpreter services are not possible, remote interpretation serves as a crucial tool for providers to improve communication with patients and families19 and we encourage the Department to maintain the current standards for remote video interpreting.

Patients and families with LEP need adequate language resources and access to language professionals—including posted signs in multiple languages, written materials, live interpreters (preferably in-person, but also remote video and telephonic interpreters), and dedicated translators of written instructions. Such services are not only crucial for equitable care but have been demonstrated to improve patient care outcomes and

16 Children of Immigrants Data Tool. https://datatool.urban.org/charts/datatool/pages.cfm#. 17 https://pediatrics.aappublications.org/content/131/6/e2028..info 18 https://downloads.aap.org/DOFA/1557%20RFI%20Comment%20Letter%20Final.pdf 19 Lion KC, Brown JC, Ebel BE et al. Effect of Telephone vs Video Interpretation on Parent Comprehension, Communication, and Utilization in the Pediatric Emergency Department: A Randomized Clinical Trial. JAMA Pediatr. 2015;169(12):1117-1125. doi:10.1001/jamapediatrics.2015.2630

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satisfaction.20 For example, a pediatrician from South Carolina shares the successful experience of a hospital with full-time, in-person interpreters, where parents and pregnant women often drive more than an hour to seek medical care for themselves and their children because they know they will have an in-person interpreter, which they know will improve their capacity to support their own health and well-being. In one instance, a child with severe visual impairment and limited English proficiency was able to connect to primary pediatric care only because the interpreter recognized that he did not have a medical home and called a case manager to facilitate connection to care.

When language services are lacking, patient care suffers. In one study, 80% of health care providers reported encountering patients with LEP,21 and under the proposed changes may be forced to resort to harmful alternatives to a licensed, qualified, medical interpreter: they may rely on inadequate second language skills, recruit untrained bilingual staff or strangers ad hoc, incorrectly assume patients understand English, or place children in the uncomfortable and unethical position of interpreting for their parents. Inadequate language resources can ultimately lead to negative, costly, and sometimes deadly consequences. For example, one New England Journal of Medicine article discusses cases of medication being placed in the ear instead of taken by mouth, resulting in paralysis and a $71 million lawsuit.22

A pediatrician from South Carolina shares a patient example from her local community hospital, where a pregnant mother presented in labor without the availability of an interpreter. The mother was subsequently not able to understand the questions or instructions provided due to a language barrier and lack of an interpreter. The infant was admitted to the neonatal intensive care unit, leading to increased medical expenses and serious stress for the family, an admission that may have been preventable and was attributed to communication barrier.

The Department has provided no explanation for how individuals will know of their rights and how elimination of notices will not deny individuals with LEP, LGBTQ persons, women, and persons with disabilities meaningful access. Similarly, without fully translated documents, taglines are necessary to ensure that individuals with LEP are aware of the protections available under the law, and to ensure compliance under Section 1557. Without notice and appropriate taglines, members of the public will have limited means of knowing that language services and auxiliary aids and services are available, how to request them, what to do if they face discrimination, that they have the right to file a complaint, and how to file such a complaint.

Overall, we strongly disagree with the Department’s assertions that the nondiscrimination notice, taglines and language access plan language in the 2016 Final Rule were not justified by need, or that they are overly burdensome. These proposed changes would limit access to care for the 25.5 million individuals with LEP in the U.S. and result in discrimination based on national origin for this already-vulnerable population. Further, our organizations oppose these changes because they can result in direct patient harm for patients with LEP, including improper use of medication, incorrect understanding of treatment options, or inadequate informed consent. Such errors could result in adverse, costly health consequences or death.

Discrimination on the Basis of Disability

Although the Department proposes to retain the protections outlined in the current regulation related to effective communication for individuals with disabilities, it requests public comment on whether some of

20 Karliner LS, Jacobs EA, Chen AH, Mutha S. Do professional interpreters improve clinical care for patients with limited English proficiency? A systematic review of the literature. Health Serv Res. 2007;42(2):727-754. doi:10.1111/j.1475-6773.2006.00629.x 21 Proctor K, Wilson-Frederick SM, Haffer SC. The Limited English Proficient Population: Describing Medicare, Medicaid, and Dual Beneficiaries. Health Equity. 2018;2(1):82-89. doi:10.1089/heq.2017.0036 22 Flores G. Language Barriers to Health Care in the United States. N Engl J Med. 2006;355(3):229-231. doi:10.1056/NEJMp058316

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these provisions should be relaxed, including: 1) exempting entities with fewer than 15 employees from providing auxiliary aids and services to ensure effective communication; 2) whether all covered entities should be subject to the architectural standards applicable to public buildings; and 3) whether the provision requiring covered entities to make reasonable modifications in policies, practices, and procedures to avoid disability-based discrimination should be revised to include an exemption for undue hardship.

Over the past 50 years, the number of children living with disabilities has tripled, largely as the result of health care advances that have allowed their survival. Despite these changing demographics, the health care system continues to use an outdated approach that emphasizes acute illness and well-child care and de-emphasizes long-term management of chronic conditions and disabilities. Children with disabilities and special health care needs disproportionately lack access to a comprehensive medical home, despite evidence that receiving care in a medical home can profoundly improve outcomes for these children: increased access to subspecialty care, fewer missed days of school, and decreased family financial burden.23 The AAP and SAHM urge the Department to maintain communication and physical access protections for individuals with disabilities to enable more children to benefit from the care coordination and other benefits of a medical home.

Our organizations strongly support the current provisions requiring effective communication for individuals with disabilities and accessibility standards, including the requirements for websites and electronic and information technology. Relaxing any of the provisions outlined above would disproportionately impact children and could harm their access to necessary services and care.

Narrowing the Scope of Application

While the AAP and SAHM are extremely concerned about the negative impact the proposed rule would have on the specific populations outlined above, we are also concerned about its broader impact on children and families as it relates to the proposed changes the Department outlines to the scope of application.

Section 1557, according to the statute and current regulations, applies to health care programs and activities receiving federal financial assistance or funding; programs administered by the federal government, including Medicare and the Indian Health Service (IHS); and entities created under Title I of the ACA. Covered entities include hospitals, clinics, and health care provider’s offices and issuers selling health insurance plans within and outside of the ACA Marketplaces.24 If an entity is principally engaged in providing or administering health services or health insurance coverage, the current regulations state that all of its activities are covered by Section 1557 if any part receives federal financial assistance.

The Department proposes to significantly limit the applicability of Section 1557 protections to exclude health insurance plans that do not receive federal financial assistance (ie, Qualified Health Plans sold through the marketplaces that receive premium tax credits, or Medicaid/Children’s Health Insurance Plan coverage that includes federal funding,) leaving children and families in other plans vulnerable to discrimination. In particular, the narrowing of scope would exclude short-term, limited duration (STLD) insurance plans, plans sold outside the marketplaces, and employer-sponsored plans – plans that consumers believe offer them the ACA’s protections against discrimination. As noted in prior comment letters opposing the expansion of STLD plans25 and Association Health Plans,26 families who purchase these plans could be subject to pre-existing condition exclusions, annual or lifetime limits, limited benefits with no guaranteed coverage of essential health benefits, rating restrictions based on health status, and no guaranteed renewability without medical

23 https://pdfs.semanticscholar.org/6dea/d6bdcc602e719951e1700aee223675d424d4.pdf 24 42 U.S.C. § 18116(a); 45 C.F.R. §§ 92.2(a), 92.4. 25 https://downloads.aap.org/DOFA/SKGSTLDI.pdf 26 https://downloads.aap.org/DOFA/SKGAHP.pdf

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underwriting. In addition, children may not have access to a full range of in-network pediatric providers to ensure they receive all necessary care, given the lack of network adequacy requirements for these plans. Our organizations oppose any expansion of short-term plans and is concerned that the language in the preamble will lead to the further proliferation of insurance products that do not comply with ACA consumer protections.

Additionally, the Department proposes narrowing the scope of the rule to cover only the specific programs and activities that receive federal funding, and not all operations, of health insurers that are not principally engaged in the business of providing health care. This change would dramatically limit the scope of nondiscrimination protections for health insurance products. Under current rules, Section 1557 applies to any insurer that receives federal financial assistance, including from premium tax credits or Medicaid/Children’s Health Insurance Program (CHIP) managed care payments. The current regulations apply to the insurer itself, meaning any product sold by that insurer must comply with Section 1557 and cannot discriminate based on race, color, national origin, age, disability, or sex. Thus, under the current rule, insurers must comply with Section 1557 across their various lines of business including in the individual marketplaces, in group markets, or in self-insured group plans, not just for the products for which they receive federal financial assistance.

In contrast, under the proposed rule, the Department would apply Section 1557 only to the specific operations for which insurers receive federal financial assistance. The other parts of an insurer’s business, such as their sale of non-ACA products, would no longer have to comply with Section 1557. As a result, Section 1557 would no longer apply to the insurer and its entire operations; but only to specific operations that are federally funded.

The result of these changes is an overall reduction of the number and type of entities required to comply with Section 1557’s non-discrimination protections. Thus, most patients who have healthcare coverage will be potentially subjected to discrimination at the plan and the provider level with no legal recourse. If finalized, the proposed rule would have severe implications for children and families’ access to care. We strongly oppose the proposed changes to scope of applicability of Section 1557 antidiscrimination protections.

Weakening of Enforcement Mechanisms

In addition to limiting the applicability of Section 1557, the proposed rule also weakens the enforcement mechanism that governs Section 1557, which will make it more difficult for children and families experiencing discrimination to seek legal recourse.

The proposed changes to section 92.301, newly designated section 92.5, would severely weaken the enforcement mechanisms that exist under the current regulation. In the case of a complaint against a recipient of federal financial assistance or a state-based marketplace, OCR currently enforces Section 1557 using the procedures applicable to Title VI of the Civil Rights Act. The rules also prohibit intimidation or retaliation and include an assurance that compensatory damages are available in 1557 actions.

All of these specific provisions would be eliminated under the proposed rule, which delegates full enforcement authority to the director of OCR to handle complaints, conduct compliance reviews, initiate investigations, and make referrals to the DOJ. Additionally, the Department would eliminate a current provision that allows individuals or entities to sue directly in federal court under Section 1557.

We strongly oppose the Department’s proposed weakening of the current enforcement mechanisms. A meaningful enforcement mechanism is necessary to ensure nondiscrimination in benefit design, including codification of the transgender-inclusive protections in the proposed rule and clarification that Section 1557 prohibits other forms of discrimination, such as restricting access to medications used to treat specific

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conditions by placing them in high cost-sharing tiers, or by using discriminatory standards to determine medical necessity for specific populations or conditions.

In conclusion, our organizations appreciate the opportunity to comment on the proposed rule. We are concerned that the proposed changes would severely threaten access to care for millions of children, including those that identify as LGBTQ, those with limited English proficiency, and those who have sought or may seek comprehensive reproductive health services, ultimately leading to poorer health outcomes or unlawful coverage denials. We urge the Department to immediately rescind the proposed rule and confirm the retention of the current rule, finalized in 2016. If you have any further questions, please don’t hesitate to contact Stephanie Glier in the AAP Washington, D.C. office at 202-347-8600 or [email protected].

Sincerely,

Kyle E. Yasuda, MD, FAAP Maria Trent, MD, MPH, FSAHM President, American Academy of Pediatrics President, Society for Adolescent Health and Medicine KY/nw

Ensuring Comprehensive Care and Support for Transgender and Gender-Diverse Children and AdolescentsJason Rafferty, MD, MPH, EdM, FAAP, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, COMMITTEE ON ADOLESCENCE, SECTION ON LESBIAN, GAY, BISEXUAL, AND TRANSGENDER HEALTH AND WELLNESS

As a traditionally underserved population that faces numerous health disparities, youth who identify as transgender and gender diverse (TGD) and their families are increasingly presenting to pediatric providers for education, care, and referrals. The need for more formal training, standardized treatment, and research on safety and medical outcomes often leaves providers feeling ill equipped to support and care for patients that identify as TGD and families. In this policy statement, we review relevant concepts and challenges and provide suggestions for pediatric providers that are focused on promoting the health and positive development of youth that identify as TGD while eliminating discrimination and stigma.

abstract

INTRODUCTION

In its dedication to the health of all children, the American Academy of Pediatrics (AAP) strives to improve health care access and eliminate disparities for children and teenagers who identify as lesbian, gay, bisexual, transgender, or questioning (LGBTQ) of their sexual or gender identity.‍1, 2 Despite some advances in public awareness and legal protections, youth who identify as LGBTQ continue to face disparities that stem from multiple sources, including inequitable laws and policies, societal discrimination, and a lack of access to quality health care, including mental health care.‍ Such challenges are often more intense for youth who do not conform to social expectations and norms regarding gender.‍ Pediatric providers are increasingly encountering such youth and their families, who seek medical advice and interventions, yet they may lack the formal training to care for youth that identify as transgender and gender diverse (TGD) and their families.‍3

This policy statement is focused specifically on children and youth that identify as TGD rather than the larger LGBTQ population, providing brief, relevant background on the basis of current available research

To cite: Rafferty J, AAP COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, AAP COMMITTEE ON ADOLESCENCE, AAP SECTION ON LESBIAN, GAY, BISEXUAL, AND TRANSGENDER HEALTH AND WELLNESS. Ensuring Com­prehensive Care and Support for Transgender and Gender­ Diverse Children and Adolescents. Pediatrics. 2018;142(4): e20182162

Department of Pediatrics, Hasbro Children’s Hospital, Providence, Rhode Island; Thundermist Health Centers, Providence, Rhode Island; and Department of Child Psychiatry, Emma Pendleton Bradley Hospital, East Providence, Rhode Island

Dr Rafferty conceptualized the statement, drafted the initial manuscript, reviewed and revised the manuscript, approved the final manuscript as submitted, and agrees to be accountable for all aspects of the work.

This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements with the American Academy of Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication.

Policy statements from the American Academy of Pediatrics benefit from expertise and resources of liaisons and internal (AAP) and external reviewers. However, policy statements from the American Academy of Pediatrics may not reflect the views of the liaisons or the organizations or government agencies that they represent.

The guidance in this statement does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.

All policy statements from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffirmed, revised, or retired at or before that time.

Organizational Principles to Guide and Define the Child Health Care System and/or Improve the Health of all Children

POLICY STATEMENT

PEDIATRICS Volume 142, number 4, October 2018:e20182162 FROM THE AMERICAN ACADEMY OF PEDIATRICS at American Academy of Pediatrics on August 13, 2019www.aappublications.org/newsDownloaded from

and expert opinion from clinical and research leaders, which will serve as the basis for recommendations.‍ It is not a comprehensive review of clinical approaches and nuances to pediatric care for children and youth that identify as TGD.‍ Professional understanding of youth that identify as TGD is a rapidly evolving clinical field in which research on appropriate clinical management is limited by insufficient funding.‍3, 4

DEFINITIONS

To clarify recommendations and discussions in this policy statement, some definitions are provided.‍ However, brief descriptions of human behavior or identities may not capture nuance in this evolving field.‍

“Sex, ” or “natal gender, ” is a label, generally “male” or “female, ” that is typically assigned at birth on the basis of genetic and anatomic characteristics, such as genital anatomy, chromosomes, and sex hormone levels.‍ Meanwhile, “gender identity” is one’s internal sense of who one is, which results from a multifaceted interaction of biological traits, developmental influences, and environmental conditions.‍ It may be male, female, somewhere in between, a combination of both, or neither (ie, not conforming to a binary conceptualization of gender).‍ Self-recognition of gender identity develops over time, much the same way as a child’s physical body does.‍ For some people, gender identity can be fluid, shifting in different contexts.‍ “Gender expression”

refers to the wide array of ways people display their gender through clothing, hair styles, mannerisms, or social roles.‍ Exploring different ways of expressing gender is common for children and may challenge social expectations.‍ The way others interpret this expression is referred to as “gender perception” (Table 1).‍5, 6

These labels may or may not be congruent.‍ The term “cisgender” is used if someone identifies and expresses a gender that is consistent with the culturally defined norms of the sex that was assigned at birth.‍ “Gender diverse” is an umbrella term to describe an ever-evolving array of labels that people may apply when their gender identity, expression, or even perception does not conform

FROM THE AMERICAN ACADEMY OF PEDIATRICS2

TABLE 1 Relevant Terms and Definitions Related to Gender Care

Term Definition

Sex An assignment that is made at birth, usually male or female, typically on the basis of external genital anatomy but sometimes on the basis of internal gonads, chromosomes, or hormone levels

Gender identity A person’s deep internal sense of being female, male, a combination of both, somewhere in between, or neither, resulting from a multifaceted interaction of biological traits, environmental factors, self­understanding, and cultural expectations

Gender expression The external way a person expresses their gender, such as with clothing, hair, mannerisms, activities, or social rolesGender perception The way others interpret a person’s gender expressionGender diverse A term that is used to describe people with gender behaviors, appearances, or identities that are incongruent with those culturally

assigned to their birth sex; gender­diverse individuals may refer to themselves with many different terms, such as transgender, nonbinary, genderqueer, 7 gender fluid, gender creative, gender independent, or noncisgender. “Gender diverse” is used to acknowledge and include the vast diversity of gender identities that exists. It replaces the former term, “gender nonconforming, ” which has a negative and exclusionary connotation.

Transgender A subset of gender­diverse youth whose gender identity does not match their assigned sex and generally remains persistent, consistent, and insistent over time; the term “transgender” also encompasses many other labels individuals may use to refer to themselves.

Cisgender A term that is used to describe a person who identifies and expresses a gender that is consistent with the culturally defined norms of the sex they were assigned at birth

Agender A term that is used to describe a person who does not identify as having a particular genderAffirmed gender When a person’s true gender identity, or concern about their gender identity, is communicated to and validated from others as

authenticMTF; affirmed female;

trans femaleTerms that are used to describe individuals who were assigned male sex at birth but who have a gender identity and/or expression

that is asserted to be more feminineFTM; affirmed male;

trans maleTerms that are used to describe individuals who were assigned female sex at birth but who have a gender identity and/or expression

that is asserted to be more masculineGender dysphoria A clinical symptom that is characterized by a sense of alienation to some or all of the physical characteristics or social roles of one’s

assigned gender; also, gender dysphoria is the psychiatric diagnosis in the DSM-5, which has focus on the distress that stems from the incongruence between one’s expressed or experienced (affirmed) gender and the gender assigned at birth.

Gender identity disorder

A psychiatric diagnosis defined previously in the DSM-IV (changed to “gender dysphoria” in the DSM-5); the primary criteria include a strong, persistent cross­sex identification and significant distress and social impairment. This diagnosis is no longer appropriate for use and may lead to stigma, but the term may be found in older research.

Sexual orientation A person’s sexual identity in relation to the gender(s) to which they are attracted; sexual orientation and gender identity develop separately.

This list is not intended to be all inclusive. The pronouns “they” and ”their” are used intentionally to be inclusive rather than the binary pronouns “he” and “she” and “his” and “her.” Adapted from Bonifacio HJ, Rosenthal SM. Gender variance and dysphoria in children and adolescents. Pediatr Clin North Am. 2015;62(4):1001–1016. Adapted from Vance SR Jr, Ehrensaft D, Rosenthal SM. Psychological and medical care of gender nonconforming youth. Pediatrics. 2014;134(6):1184–1192. DSM­5, Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition; DSM­IV, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition; FTM, female to male; MTF, male to female.

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to the norms and stereotypes others expect of their assigned sex.‍ “Transgender” is usually reserved for a subset of such youth whose gender identity does not match their assigned sex and generally remains persistent, consistent, and insistent over time.‍ These terms are not diagnoses; rather, they are personal and often dynamic ways of describing one’s own gender experience.‍

Gender identity is not synonymous with “sexual orientation, ” which refers to a person’s identity in relation to the gender(s) to which they are sexually and romantically attracted.‍ Gender identity and sexual orientation are distinct but interrelated constructs.‍8 Therefore, being transgender does not imply a sexual orientation, and people who identify as transgender still identify as straight, gay, bisexual, etc, on the basis of their attractions.‍ (For more information, The Gender Book, found at www.‍ thegenderbook.‍ com, is a resource with illustrations that are used to highlight these core terms and concepts.‍)

EPIDEMIOLOGY

In population-based surveys, questions related to gender identity are rarely asked, which makes it difficult to assess the size and characteristics of the population that is TGD.‍ In the 2014 Behavioral Risk Factor Surveillance System of the Centers for Disease Control and Prevention, only 19 states elected to include optional questions on gender identity.‍ Extrapolation from these data suggests that the US prevalence of adults who identify as transgender or “gender nonconforming” is 0.‍6% (1.‍4 million), ranging from 0.‍3% in North Dakota to 0.‍8% in Hawaii.‍9 On the basis of these data, it has been estimated that 0.‍7% of youth ages 13 to 17 years (∼150 000) identify as transgender.‍10 This number is much higher than previous estimates, which were

extrapolated from individual states or specialty clinics, and is likely an underestimate given the stigma regarding those who openly identify as transgender and the difficulty in defining “transgender” in a way that is inclusive of all gender-diverse identities.‍11

There have been no large-scale prevalence studies among children and adolescents, and there is no evidence that adult statistics reflect young children or adolescents.‍ In the 2014 Behavioral Risk Factor Surveillance System, those 18 to 24 years of age were more likely than older age groups to identify as transgender (0.‍7%).‍9 Children report being aware of gender incongruence at young ages.‍ Children who later identify as TGD report first having recognized their gender as “different” at an average age of 8.‍5 years; however, they did not disclose such feelings until an average of 10 years later.‍12

MENTAL HEALTH IMPLICATIONS

Adolescents and adults who identify as transgender have high rates of depression, anxiety, eating disorders, self-harm, and suicide.‍13 – 20 Evidence suggests that an identity of TGD has an increased prevalence among individuals with autism spectrum disorder, but this association is not yet well understood.‍21, 22 In 1 retrospective cohort study, 56% of youth who identified as transgender reported previous suicidal ideation, and 31% reported a previous suicide attempt, compared with 20% and 11% among matched youth who identified as cisgender, respectively.‍13 Some youth who identify as TGD also experience gender dysphoria, which is a specific diagnosis given to those who experience impairment in peer and/or family relationships, school performance, or other aspects of their life as a consequence of the

incongruence between their assigned sex and their gender identity.‍23

There is no evidence that risk for mental illness is inherently attributable to one’s identity of TGD.‍ Rather, it is believed to be multifactorial, stemming from an internal conflict between one’s appearance and identity, limited availability of mental health services, low access to health care providers with expertise in caring for youth who identify as TGD, discrimination, stigma, and social rejection.‍24 This was affirmed by the American Psychological Association in 200825 (with practice guidelines released in 20158) and the American Psychiatric Association, which made the following statement in 2012:

Being transgender or gender variant implies no impairment in judgment, stability, reliability, or general social or vocational capabilities; however, these individuals often experience discrimination due to a lack of civil rights protections for their gender identity or expression.… [Such] discrimination and lack of equal civil rights is damaging to the mental health of transgender and gender variant individuals.‍26

Youth who identify as TGD often confront stigma and discrimination, which contribute to feelings of rejection and isolation that can adversely affect physical and emotional well-being.‍ For example, many youth believe that they must hide their gender identity and expression to avoid bullying, harassment, or victimization.‍ Youth who identify as TGD experience disproportionately high rates of homelessness, physical violence (at home and in the community), substance abuse, and high-risk sexual behaviors.‍5, 6, 12, 27 – 31 Among the 3 million HIV testing events that were reported in 2015, the highest percentages of new infections were among women who identified as transgender32 and were also at particular risk for not knowing their HIV status.‍30

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GENDER-AFFIRMATIVE CARE

In a gender-affirmative care model (GACM), pediatric providers offer developmentally appropriate care that is oriented toward understanding and appreciating the youth’s gender experience.‍ A strong, nonjudgmental partnership with youth and their families can facilitate exploration of complicated emotions and gender-diverse expressions while allowing questions and concerns to be raised in a supportive environment.‍5 In a GACM, the following messages are conveyed:

• transgender identities and diverse gender expressions do not constitute a mental disorder;

• variations in gender identity and expression are normal aspects of human diversity, and binary definitions of gender do not always reflect emerging gender identities;

• gender identity evolves as an interplay of biology, development, socialization, and culture; and

• if a mental health issue exists, it most often stems from stigma and negative experiences rather than being intrinsic to the child.‍27, 33

The GACM is best facilitated through the integration of medical, mental health, and social services, including specific resources and supports for parents and families.‍24 Providers work together to destigmatize gender variance, promote the child’s self-worth, facilitate access to care, educate families, and advocate for safer community spaces where children are free to develop and explore their gender.‍5 A specialized gender-affirmative therapist, when available, may be an asset in helping children and their families build skills for dealing with gender-based stigma, address symptoms of anxiety or depression, and reinforce the child’s overall resiliency.‍34, 35 There is a limited but growing body

of evidence that suggests that using an integrated affirmative model results in young people having fewer mental health concerns whether they ultimately identify as transgender.‍24, 36, 37

In contrast, “conversion” or “reparative” treatment models are used to prevent children and adolescents from identifying as transgender or to dissuade them from exhibiting gender-diverse expressions.‍ The Substance Abuse and Mental Health Services Administration has concluded that any therapeutic intervention with the goal of changing a youth’s gender expression or identity is inappropriate.‍33 Reparative approaches have been proven to be not only unsuccessful38 but also deleterious and are considered outside the mainstream of traditional medical practice.‍29, 39 – 42 The AAP described reparative approaches as “unfair and deceptive.‍” 43 At the time of this writing, * conversion therapy was banned by executive regulation in New York and by legislative statutes in 9 other states as well as the District of Columbia.‍44

Pediatric providers have an essential role in assessing gender concerns and providing evidence-based information to assist youth and families in medical decision-making.‍ Not doing so can prolong or exacerbate gender dysphoria and contribute to abuse and stigmatization.‍35 If a pediatric provider does not feel prepared to address gender concerns when they occur, then referral to a pediatric or mental health provider with more expertise is appropriate.‍ There is little research on communication and efficacy with transfers in care for youth who identify as TGD,

* For more information regarding state­specific laws, please contact the AAP Division of State Government Affairs at stgov@ aap.org.

particularly from pediatric to adult providers.‍

DEVELOPMENTAL CONSIDERATIONS

Acknowledging that the capacity for emerging abstract thinking in childhood is important to conceptualize and reflect on identity, gender-affirmation guidelines are being focused on individually tailored interventions on the basis of the physical and cognitive development of youth who identify as TGD.‍45 Accordingly, research substantiates that children who are prepubertal and assert an identity of TGD know their gender as clearly and as consistently as their developmentally equivalent peers who identify as cisgender and benefit from the same level of social acceptance.‍46 This developmental approach to gender affirmation is in contrast to the outdated approach in which a child’s gender-diverse assertions are held as “possibly true” until an arbitrary age (often after pubertal onset) when they can be considered valid, an approach that authors of the literature have termed “watchful waiting.‍” This outdated approach does not serve the child because critical support is withheld.‍ Watchful waiting is based on binary notions of gender in which gender diversity and fluidity is pathologized; in watchful waiting, it is also assumed that notions of gender identity become fixed at a certain age.‍ The approach is also influenced by a group of early studies with validity concerns, methodologic flaws, and limited follow-up on children who identified as TGD and, by adolescence, did not seek further treatment (“desisters”).‍45, 47 More robust and current research suggests that, rather than focusing on who a child will become, valuing them for who they are, even at a young age, fosters secure attachment and resilience, not only for the child but also for the whole family.‍5, 45, 48, 49

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MEDICAL MANAGEMENT

Pediatric primary care providers are in a unique position to routinely inquire about gender development in children and adolescents as part of recommended well-child visits50 and to be a reliable source of validation, support, and reassurance.‍ They are often the first provider to be aware that a child may not identify as cisgender or that there may be distress related to a gender-diverse identity.‍ The best way to approach gender with patients is to inquire directly and nonjudgmentally about their experience and feelings before applying any labels.‍27, 51

Many medical interventions can be offered to youth who identify as TGD and their families.‍ The decision of whether and when to initiate gender-affirmative treatment is personal and involves careful consideration of risks, benefits, and other factors unique to each patient and family.‍ Many protocols suggest that clinical assessment of youth who identify as TGD is ideally conducted on an ongoing basis in the setting of a collaborative, multidisciplinary approach, which, in addition to the patient and family, may include the pediatric provider, a mental health provider (preferably with expertise in caring for youth who identify as TGD ), social and legal supports, and a pediatric endocrinologist or adolescent-medicine gender specialist, if available.‍6, 28 There is no prescribed path, sequence, or end point.‍ Providers can make every effort to be aware of the influence of their own biases.‍ The medical options also vary depending on pubertal and developmental progression.‍

Clinical Setting

In the past year, 1 in 4 adults who identified as transgender avoided a necessary doctor’s visit because of fear of being mistreated.‍31 All clinical office staff have a role in affirming a patient’s gender identity.‍ Making flyers available or displaying posters

related to LGBTQ health issues, including information for children who identify as TGD and families, reveals inclusivity and awareness.‍ Generally, patients who identify as TGD feel most comfortable when they have access to a gender-neutral restroom.‍ Diversity training that encompasses sensitivity when caring for youth who identify as TGD and their families can be helpful in educating clinical and administrative staff.‍ A patient-asserted name and pronouns are used by staff and are ideally reflected in the electronic medical record without creating duplicate charts.‍52, 53 The US Centers for Medicare and Medicaid Services and the National Coordinator for Health Information Technology require all electronic health record systems certified under the Meaningful Use incentive program to have the capacity to confidentially collect information on gender identity.‍54, 55 Explaining and maintaining confidentiality procedures promotes openness and trust, particularly with youth who identify as LGBTQ.‍1 Maintaining a safe clinical space can provide at least 1 consistent, protective refuge for patients and families, allowing authentic gender expression and exploration that builds resiliency.‍

Pubertal Suppression

Gonadotrophin-releasing hormones have been used to delay puberty since the 1980s for central precocious puberty.‍56 These reversible treatments can also be used in adolescents who experience gender dysphoria to prevent development of secondary sex characteristics and provide time up until 16 years of age for the individual and the family to explore gender identity, access psychosocial supports, develop coping skills, and further define appropriate treatment goals.‍ If pubertal suppression treatment is

suspended, then endogenous puberty will resume.‍20, 57, 58

Often, pubertal suppression creates an opportunity to reduce distress that may occur with the development of secondary sexual characteristics and allow for gender-affirming care, including mental health support for the adolescent and the family.‍ It reduces the need for later surgery because physical changes that are otherwise irreversible (protrusion of the Adam’s apple, male pattern baldness, voice change, breast growth, etc) are prevented.‍ The available data reveal that pubertal suppression in children who identify as TGD generally leads to improved psychological functioning in adolescence and young adulthood.‍20, 57 – 59

Pubertal suppression is not without risks.‍ Delaying puberty beyond one’s peers can also be stressful and can lead to lower self-esteem and increased risk taking.‍60 Some experts believe that genital underdevelopment may limit some potential reconstructive options.‍61 Research on long-term risks, particularly in terms of bone metabolism62 and fertility, 63 is currently limited and provides varied results.‍57, 64, 65 Families often look to pediatric providers for help in considering whether pubertal suppression is indicated in the context of their child’s overall well-being as gender diverse.‍

Gender Affirmation

As youth who identify as TGD reflect on and evaluate their gender identity, various interventions may be considered to better align their gender expression with their underlying identity.‍ This process of reflection, acceptance, and, for some, intervention is known as “gender affirmation.‍” It was formerly referred to as “transitioning, ” but many view the process as an affirmation and acceptance of who they have always been rather than a transition

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from 1 gender identity to another.‍ Accordingly, some people who have gone through the process prefer to call themselves “affirmed females, males, etc” (or just “females, males, etc”), rather than using the prefix “trans-.‍” Gender affirmation is also used to acknowledge that some individuals who identify as TGD may feel affirmed in their gender without pursuing medical or surgical interventions.‍7, 66

Supportive involvement of parents and family is associated with better mental and physical health outcomes.‍67 Gender affirmation among adolescents with gender dysphoria often reduces the emphasis on gender in their lives, allowing them to attend to other developmental tasks, such as academic success, relationship building, and future-oriented planning.‍64 Most protocols for gender-affirming interventions incorporate World Professional Association of Transgender

Health35 and Endocrine Society68 recommendations and include ≥1 of the following elements (Table 2):

1.‍ Social Affirmation: This is a reversible intervention in which children and adolescents express partially or completely in their asserted gender identity by adapting hairstyle, clothing, pronouns, name, etc.‍ Children who identify as transgender and socially affirm and are supported in their asserted gender show no increase in depression and only minimal (clinically insignificant) increases in anxiety compared with age-matched averages.‍48 Social affirmation can be complicated given the wide range of social interactions children have (eg, extended families, peers, school, community, etc).‍ There is little guidance on the best approach (eg, all at once, gradual, creating new social networks, or affirming within existing networks, etc).‍ Pediatric providers

can best support families by anticipating and discussing such complexity proactively, either in their own practice or through enlisting a qualified mental health provider.‍

2.‍ Legal Affirmation: Elements of a social affirmation, such as a name and gender marker, become official on legal documents, such as birth certificates, passports, identification cards, school documents, etc.‍ The processes for making these changes depend on state laws and may require specific documentation from pediatric providers.‍

3.‍ Medical Affirmation: This is the process of using cross-sex hormones to allow adolescents who have initiated puberty to develop secondary sex characteristics of the opposite biological sex.‍ Some changes are partially reversible if hormones are stopped, but others become

FROM THE AMERICAN ACADEMY OF PEDIATRICS6

TABLE 2 The Process of Gender Affirmation May Include ≥1 of the Following Components

Component Definition General Age Rangea Reversibilitya

Social affirmation Adopting gender­affirming hairstyles, clothing, name, gender pronouns, and restrooms and other facilities

Any Reversible

Puberty blockers Gonadotropin­releasing hormone analogues, such as leuprolide and histrelin

During puberty (Tanner stage 2–5)b Reversiblec

Cross­sex hormone therapy Testosterone (for those who were assigned female at birth and are masculinizing); estrogen plus androgen inhibitor (for those who were assigned male at birth and are feminizing)

Early adolescence onward Partially reversible (skin texture, muscle mass, and fat deposition); irreversible once developed (testosterone: Adam’s apple protrusion, voice changes, and male pattern baldness; estrogen: breast development); unknown reversibility (effect on fertility)

Gender­affirming surgeries “Top” surgery (to create a male­typical chest shape or enhance breasts); “bottom” surgery (surgery on genitals or reproductive organs); facial feminization and other procedures

Typically adults (adolescents on case­by­case basisd)

Not reversible

Legal affirmation Changing gender and name recorded on birth certificate, school records, and other documents

Any Reversible

a Note that the provided age range and reversibility is based on the little data that are currently available.b There is limited benefit to starting gonadotropin­releasing hormone after Tanner stage 5 for pubertal suppression. However, when cross­sex hormones are initiated with a gradually increasing schedule, the initial levels are often not high enough to suppress endogenous sex hormone secretion. Therefore, gonadotropin­releasing hormone may be continued in accordance with the Endocrine Society Guidelines.68

c The effect of sustained puberty suppression on fertility is unknown. Pubertal suppression can be, and often is indicated to be, followed by cross­sex hormone treatment. However, when cross­sex hormones are initiated without endogenous hormones, then fertility may be decreased.68

d Eligibility criteria for gender­affirmative surgical interventions among adolescents are not clearly defined between established protocols and practice. When applicable, eligibility is usually determined on a case­by­case basis with the adolescent and the family along with input from medical, mental health, and surgical providers.68 – 71

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irreversible once they are fully developed (Table 2).‍

4.‍ Surgical Affirmation: Surgical approaches may be used to feminize or masculinize features, such as hair distribution, chest, or genitalia, and may include removal of internal organs, such as ovaries or the uterus (affecting fertility).‍ These changes are irreversible.‍ Although current protocols typically reserve surgical interventions for adults, 35, 68 they are occasionally pursued during adolescence on a case-by-case basis, considering the necessity and benefit to the adolescent’s overall health and often including multidisciplinary input from medical, mental health, and surgical providers as well as from the adolescent and family.‍69 –71

For some youth who identify as TGD whose natal gender is female, menstruation, breakthrough bleeding, and dysmenorrhea can lead to significant distress before or during gender affirmation.‍ The American College of Obstetrics and Gynecology suggests that, although limited data are available to outline management, menstruation can be managed without exogenous estrogens by using a progesterone-only pill, a medroxyprogesterone acetate shot, or a progesterone-containing intrauterine or implantable device.‍72 If estrogen can be tolerated, oral contraceptives that contain both progesterone and estrogen are more effective at suppressing menses.‍73 The Endocrine Society guidelines also suggest that gonadotrophin-releasing hormones can be used for menstrual suppression before the anticipated initiation of testosterone or in combination with testosterone for breakthrough bleeding (enables phenotypic masculinization at a lower dose than if testosterone is used alone).‍68 Masculinizing hormones in natal female patients may lead to a cessation of menses,

but unplanned pregnancies have been reported, which emphasizes the need for ongoing contraceptive counseling with youth who identify as TGD.‍72

HEALTH DISPARITIES

In addition to societal challenges, youth who identify as TGD face several barriers within the health care system, especially regarding access to care.‍ In 2015, a focus group of youth who identified as transgender in Seattle, Washington, revealed 4 problematic areas related to health care:

1.‍ safety issues, including the lack of safe clinical environments and fear of discrimination by providers;

2.‍ poor access to physical health services, including testing for sexually transmitted infections;

3.‍ inadequate resources to address mental health concerns; and

4.‍ lack of continuity with providers.‍74

This study reveals the obstacles many youth who identify as TGD face in accessing essential services, including the limited supply of appropriately trained medical and psychological providers, fertility options, and insurance coverage denials for gender-related treatments.‍74

Insurance denials for services related to the care of patients who identify as TGD are a significant barrier.‍ Although the Office for Civil Rights of the US Department of Health and Human Services explicitly stated in 2012 that the nondiscrimination provision in the Patient Protection and Affordable Care Act includes people who identify as gender diverse, 75, 76 insurance claims for gender affirmation, particularly among youth who identify as TGD, are frequently denied.‍54, 77 In 1 study, it was found that approximately 25% of individuals

who identified as transgender were denied insurance coverage because of being transgender.‍31 The burden of covering medical expenses that are not covered by insurance can be financially devastating, and even when expenses are covered, families describe high levels of stress in navigating and submitting claims appropriately.‍78 In 2012, a large gender center in Boston, Massachusetts, reported that most young patients who identified as transgender and were deemed appropriate candidates for recommended gender care were unable to obtain it because of such denials, which were based on the premise that gender dysphoria was a mental disorder, not a physical one, and that treatment was not medically or surgically necessary.‍24 This practice not only contributes to stigma, prolonged gender dysphoria, and poor mental health outcomes, 77 but it may also lead patients to seek nonmedically supervised treatments that are potentially dangerous.‍24 Furthermore, insurance denials can reinforce a socioeconomic divide between those who can finance the high costs of uncovered care and those who cannot.‍24, 77

The transgender youth group in Seattle likely reflected the larger TGD population when they described how obstacles adversely affect self-esteem and contribute to the perception that they are undervalued by society and the health care system.‍74, 77 Professional medical associations, including the AAP, are increasingly calling for equity in health care provisions regardless of gender identity or expression.‍1, 8, 23, 72 There is a critical need for investments in research on the prevalence, disparities, biological underpinnings, and standards of care relating to gender-diverse populations.‍ Pediatric providers who work with state government and insurance officials can play an essential role in advocating for

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stronger nondiscrimination policies and improved coverage.‍

There is a lack of quality research on the experience of youth of color who identify as transgender.‍ One theory suggests that the intersection of racism, transphobia, and sexism may result in the extreme marginalization that is experienced among many women of color who identify as transgender, 79 including rejection from their family and dropping out of school at younger ages (often in the setting of rigid religious beliefs regarding gender), 80 increased levels of violence and body objectification, 81 3 times the risk of poverty compared with the general population, 31 and the highest prevalence of HIV compared with other risk groups (estimated as high as 56.‍3% in 1 meta-analysis).‍30 One model suggests that pervasive stigma and oppression can be associated with psychological distress (anxiety, depression, and suicide) and adoption of risk behaviors by such youth to obtain a sense of validation toward their complex identities.‍79

FAMILY ACCEPTANCE

Research increasingly suggests that familial acceptance or rejection ultimately has little influence on the gender identity of youth; however, it may profoundly affect young people’s ability to openly discuss or disclose concerns about their identity.‍ Suppressing such concerns can affect mental health.‍82 Families often find it hard to understand and accept their child’s gender-diverse traits because of personal beliefs, social pressure, and stigma.‍49, 83 Legitimate fears may exist for their child’s welfare, safety, and acceptance that pediatric providers need to appreciate and address.‍ Families can be encouraged to communicate their concerns and questions.‍ Unacknowledged concerns can contribute to shame and hesitation in regard to offering support and understanding, 84

which is essential for the child’s self-esteem, social involvement, and overall health as TGD.‍48, 85 – 87 Some caution has been expressed that unquestioning acceptance per se may not best serve questioning youth or their families.‍ Instead, psychological evidence suggests that the most benefit comes when family members and youth are supported and encouraged to engage in reflective perspective taking and validate their own and the other’s thoughts and feelings despite divergent views.‍49, 82

In this regard, suicide attempt rates among 433 adolescents in Ontario who identified as “trans” were 4% among those with strongly supportive parents and as high as 60% among those whose parents were not supportive.‍85 Adolescents who identify as transgender and endorse at least 1 supportive person in their life report significantly less distress than those who only experience rejection.‍ In communities with high levels of support, it was found that nonsupportive families tended to increase their support over time, leading to dramatic improvement in mental health outcomes among their children who identified as transgender.‍88

Pediatric providers can create a safe environment for parents and families to better understand and listen to the needs of their children while receiving reassurance and education.‍83 It is often appropriate to assist the child in understanding the parents’ concerns as well.‍ Despite expectations by some youth with transgender identity for immediate acceptance after “coming out, ” family members often proceed through a process of becoming more comfortable and understanding of the youth’s gender identity, thoughts, and feelings.‍ One model suggests that the process resembles grieving, wherein the family separates from their expectations for their child to embrace a new reality.‍ This process may proceed through stages of shock,

denial, anger, feelings of betrayal, fear, self-discovery, and pride.‍89 The amount of time spent in any of these stages and the overall pace varies widely.‍ Many family members also struggle as they are pushed to reflect on their own gender experience and assumptions throughout this process.‍ In some situations, youth who identify as TGD may be at risk for internalizing the difficult emotions that family members may be experiencing.‍ In these cases, individual and group therapy for the family members may be helpful.‍49, 78

Family dynamics can be complex, involving disagreement among legal guardians or between guardians and their children, which may affect the ability to obtain consent for any medical management or interventions.‍ Even in states where minors may access care without parental consent for mental health services, contraception, and sexually transmitted infections, parental or guardian consent is required for hormonal and surgical care of patients who identify as TGD.‍72, 90 Some families may take issue with providers who address gender concerns or offer gender-affirming care.‍ In rare cases, a family may deny access to care that raises concerns about the youth’s welfare and safety; in those cases, additional legal or ethical support may be useful to consider.‍ In such rare situations, pediatric providers may want to familiarize themselves with relevant local consent laws and maintain their primary responsibility for the welfare of the child.‍

SAFE SCHOOLS AND COMMUNITIES

Youth who identify as TGD are becoming more visible because gender-diverse expression is increasingly admissible in the media, on social media, and in schools and communities.‍ Regardless of whether a youth with a gender-diverse

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identity ultimately identifies as transgender, challenges exist in nearly every social context, from lack of understanding to outright rejection, isolation, discrimination, and victimization.‍ In the US Transgender Survey of nearly 28 000 respondents, it was found that among those who were out as or perceived to be TGD between kindergarten and eighth grade, 54% were verbally harassed, 24% were physically assaulted, and 13% were sexually assaulted; 17% left school because of maltreatment.‍31 Education and advocacy from the medical community on the importance of safe schools for youth who identify as TGD can have a significant effect.‍

At the time of this writing, * only 18 states and the District of Columbia had laws that prohibited discrimination based on gender expression when it comes to employment, housing, public accommodations, and insurance benefits.‍ Over 200 US cities have such legislation.‍ In addition to basic protections, many youth who identify as TGD also have to navigate legal obstacles when it comes to legally changing their name and/or gender marker.‍54 In addition to advocating and working with policy makers to promote equal protections for youth who identify as TGD, pediatric providers can play an important role by developing a familiarity with local laws and organizations that provide social work and legal assistance to youth who identify as TGD and their families.‍

School environments play a significant role in the social and emotional development of children.‍ Every child has a right to feel safe

* For more information regarding state­specific laws, please contact the AAP Division of State Government Affairs at stgov@ aap.org.

and respected at school, but for youth who identify as TGD, this can be challenging.‍ Nearly every aspect of school life may present safety concerns and require negotiations regarding their gender expression, including name/pronoun use, use of bathrooms and locker rooms, sports teams, dances and activities, overnight activities, and even peer groups.‍ Conflicts in any of these areas can quickly escalate beyond the school’s control to larger debates among the community and even on a national stage.‍

The formerly known Gay, Lesbian, and Straight Education Network (GLSEN), an advocacy organization for youth who identify as LGBTQ, conducts an annual national survey to measure LGBTQ well-being in US schools.‍ In 2015, students who identified as LGBTQ reported high rates of being discouraged from participation in extracurricular activities.‍ One in 5 students who identified as LGBTQ reported being hindered from forming or participating in a club to support lesbian, gay, bisexual, or transgender students (eg, a gay straight alliance, now often referred to as a genders and sexualities alliance) despite such clubs at schools being associated with decreased reports of negative remarks about sexual orientation or gender expression, increased feelings of safety and connectedness at school, and lower levels of victimization.‍ In addition, >20% of students who identified as LGBTQ reported being blocked from writing about LGBTQ issues in school yearbooks or school newspapers or being prevented or discouraged by coaches and school staff from participating in sports because of their sexual orientation or gender expression.‍91

One strategy to prevent conflict is to proactively support policies and protections that promote inclusion and safety of all students.‍ However, such policies are far from

consistent across districts.‍ In 2015, GLSEN found that 43% of children who identified as LGBTQ reported feeling unsafe at school because of their gender expression, but only 6% reported that their school had official policies to support youth who identified as TGD, and only 11% reported that their school’s antibullying policies had specific protections for gender expression.‍91 Consequently, more than half of the students who identified as transgender in the study were prevented from using the bathroom, names, or pronouns that aligned with their asserted gender at school.‍ A lack of explicit policies that protected youth who identified as TGD was associated with increased reported victimization, with more than half of students who identified as LGBTQ reporting verbal harassment because of their gender expression.‍ Educators and school administrators play an essential role in advocating for and enforcing such policies.‍ GLSEN found that when students recognized actions to reduce gender-based harassment, both students who identified as transgender and cisgender reported a greater connection to staff and feelings of safety.‍91 In another study, schools were open to education regarding gender diversity and were willing to implement policies when they were supported by external agencies, such as medical professionals.‍92

Academic content plays an important role in building a safe school environment as well.‍ The 2015 GLSEN survey revealed that when positive representations of people who identified as LGBTQ were included in the curriculum, students who identified as LGBTQ reported less hostile school environments, less victimization and greater feelings of safety, fewer school absences because of feeling unsafe, greater feelings of connectedness to their school

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community, and an increased interest in high school graduation and postsecondary education.‍91 At the time of this writing, * 8 states had laws that explicitly forbade teachers from even discussing LGBTQ issues.‍54

MEDICAL EDUCATION

One of the most important ways to promote high-quality health care for youth who identify as TGD and their families is increasing the knowledge base and clinical experience of pediatric providers in providing culturally competent care to such populations, as recommended by the recently released guidelines by the Association of American Medical Colleges.‍93 This begins with the medical school curriculum in areas such as human development, sexual health, endocrinology, pediatrics, and psychiatry.‍ In a 2009–2010 survey of US medical schools, it was found that the median number of hours dedicated to LGBTQ health was 5, with one-third of US medical schools reporting no LGBTQ curriculum during the clinical years.‍94

During residency training, there is potential for gender diversity to be emphasized in core rotations, especially in pediatrics, psychiatry, family medicine, and obstetrics and gynecology.‍ Awareness could be promoted through the inclusion of topics relevant to caring for children who identify as TGD in the list of core competencies published by the American Board of Pediatrics, certifying examinations, and relevant study materials.‍ Continuing education and maintenance of certification activities can include topics relevant to TGD populations as well.‍

* For more information regarding state­specific laws, please contact the AAP Division of State Government Affairs at stgov@ aap.org.

RECOMMENDATIONS

The AAP works toward all children and adolescents, regardless of gender identity or expression, receiving care to promote optimal physical, mental, and social well-being.‍ Any discrimination based on gender identity or expression, real or perceived, is damaging to the socioemotional health of children, families, and society.‍ In particular, the AAP recommends the following:

1.‍ that youth who identify as TGD have access to comprehensive, gender-affirming, and developmentally appropriate health care that is provided in a safe and inclusive clinical space;

2.‍ that family-based therapy and support be available to recognize and respond to the emotional and mental health needs of parents, caregivers, and siblings of youth who identify as TGD;

3.‍ that electronic health records, billing systems, patient-centered notification systems, and clinical research be designed to respect the asserted gender identity of each patient while maintaining confidentiality and avoiding duplicate charts;

4.‍ that insurance plans offer coverage for health care that is specific to the needs of youth who identify as TGD, including coverage for medical, psychological, and, when indicated, surgical gender-affirming interventions;

5.‍ that provider education, including medical school, residency, and continuing education, integrate core competencies on the emotional and physical health needs and best practices for the care of youth who identify as TGD and their families;

6.‍ that pediatricians have a role in advocating for, educating, and developing liaison relationships

with school districts and other community organizations to promote acceptance and inclusion of all children without fear of harassment, exclusion, or bullying because of gender expression;

7.‍ that pediatricians have a role in advocating for policies and laws that protect youth who identify as TGD from discrimination and violence;

8.‍ that the health care workforce protects diversity by offering equal employment opportunities and workplace protections, regardless of gender identity or expression; and

9.‍ that the medical field and federal government prioritize research that is dedicated to improving the quality of evidence-based care for youth who identify as TGD.‍

LEAD AUTHOR

Jason Richard Rafferty, MD, MPH, EdM, FAAP

CONTRIBUTOR

Robert Garofalo, MD, FAAP

COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, 2017–2018

Michael Yogman, MD, FAAP, Chairperson

Rebecca Baum, MD, FAAP

Thresia B. Gambon, MD, FAAP

Arthur Lavin, MD, FAAP

Gerri Mattson, MD, FAAP

Lawrence Sagin Wissow, MD, MPH, FAAP

LIAISONS

Sharon Berry, PhD, LP – Society of Pediatric Psychology

Ed Christophersen, PhD, FAAP – Society of Pediatric Psychology

Norah Johnson, PhD, RN, CPNP­BC – National Association of Pediatric Nurse Practitioners

Amy Starin, PhD, LCSW – National Association of Social Workers

Abigail Schlesinger, MD – American Academy of Child and Adolescent Psychiatry

STAFF

Karen S. SmithJames Baumberger

FROM THE AMERICAN ACADEMY OF PEDIATRICS10 at American Academy of Pediatrics on August 13, 2019www.aappublications.org/newsDownloaded from

COMMITTEE ON ADOLESCENCE, 2017–2018

Cora Breuner, MD, MPH, FAAP, ChairpersonElizabeth M. Alderman, MD, FSAHM, FAAPLaura K. Grubb, MD, MPH, FAAPMakia E. Powers, MD, MPH, FAAPKrishna Upadhya, MD, FAAPStephenie B. Wallace, MD, FAAP

LIAISONS

Laurie Hornberger, MD, MPH, FAAP – Section on Adolescent HealthLiwei L. Hua, MD, PhD – American Academy of Child and Adolescent PsychiatryMargo A. Lane, MD, FRCPC, FAAP – Canadian Paediatric SocietyMeredith Loveless, MD, FACOG – American College of Obstetricians and GynecologistsSeema Menon, MD – North American Society of Pediatric and Adolescent GynecologyCDR Lauren B. Zapata, PhD, MSPH – Centers for Disease Control and Prevention

STAFF

Karen Smith

SECTION ON LESBIAN, GAY, BISEXUAL, AND TRANSGENDER HEALTH AND WELLNESS EXECUTIVE COMMITTEE, 2016–2017

Lynn Hunt, MD, FAAP, ChairpersonAnne Teresa Gearhart, MD, FAAPChristopher Harris, MD, FAAPKathryn Melland Lowe, MD, FAAPChadwick Taylor Rodgers, MD, FAAPIlana Michelle Sherer, MD, FAAP

FORMER EXECUTIVE COMMITTEE MEMBERS

Ellen Perrin, MD, MA, FAAP

LIAISON

Joseph H. Waters, MD – AAP Section on Pediatric Trainees

STAFF

Renee Jarrett, MPH

ACKNOWLEDGMENTS

We thank Isaac Albanese, MPA, and Jayeson Watts, LICSW, for their thoughtful reviews and contributions.‍

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DOI: https:// doi. org/ 10. 1542/ peds. 2018­ 2162

Address correspondence to Jason Rafferty, MD, MPH, EdM, FAAP. E­mail: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031­4005; Online, 1098­4275).

Copyright © 2018 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.

ABBREVIATIONS

AAP:  American Academy of Pediatrics

GACM:  gender-affirmative care model

GLSEN:  Gay, Lesbian, and Straight Education Network

LGBTQ:  lesbian, gay, bisexual, transgender, or questioning

TGD:  transgender and gender diverse

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DOI: 10.1542/peds.2018-2162 originally published online September 17, 2018; 2018;142;Pediatrics 

LESBIAN, GAY, BISEXUAL, AND TRANSGENDER HEALTH AND WELLNESSFAMILY HEALTH, COMMITTEE ON ADOLESCENCE and SECTION ON

Jason Rafferty, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD ANDGender-Diverse Children and Adolescents

Ensuring Comprehensive Care and Support for Transgender and

http://pediatrics.aappublications.org/content/142/4/e20182162located on the World Wide Web at:

The online version of this article, along with updated information and services, is

1073-0397. ISSN:60007. Copyright © 2018 by the American Academy of Pediatrics. All rights reserved. Print

the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois,has been published continuously since 1948. Pediatrics is owned, published, and trademarked by Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it

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FROM THE AMERICAN ACADEMY OF PEDIATRICSPEDIATRICS Volume 138 , number 2 , August 2016 :e 20161348

Sexuality Education for Children and AdolescentsCora C. Breuner, MD, MPH, Gerri Mattson, MD, MSPH, COMMITTEE ON ADOLESCENCE, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH

This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have fi led confl ict of interest statements with the American Academy of Pediatrics. Any confl icts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication.

Clinical reports from the American Academy of Pediatrics benefi t from expertise and resources of liaisons and internal (AAP) and external reviewers. However, clinical reports from the American Academy of Pediatrics may not refl ect the views of the liaisons or the organizations or government agencies that they represent.

The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.

All clinical reports from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffi rmed, revised, or retired at or before that time.

DOI: 10.1542/peds.2016-1348

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2016 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have

no fi nancial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated

they have no potential confl icts of interest to disclose.

abstractThe purpose of this clinical report is to provide pediatricians updated

research on evidence-based sexual and reproductive health education

conducted since the original clinical report on the subject was published by

the American Academy of Pediatrics in 2001. Sexuality education is defi ned

as teaching about human sexuality, including intimate relationships, human

sexual anatomy, sexual reproduction, sexually transmitted infections, sexual

activity, sexual orientation, gender identity, abstinence, contraception, and

reproductive rights and responsibilities. Developmentally appropriate and

evidence-based education about human sexuality and sexual reproduction

over time provided by pediatricians, schools, other professionals, and

parents is important to help children and adolescents make informed,

positive, and safe choices about healthy relationships, responsible sexual

activity, and their reproductive health. Sexuality education has been shown

to help to prevent and reduce the risks of adolescent pregnancy, HIV, and

sexually transmitted infections for children and adolescents with and

without chronic health conditions and disabilities in the United States.

CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

INTRODUCTION

The purpose of this clinical report is to provide pediatricians with

an update on the research regarding evidence-based sexual and

reproductive health education that has been conducted since the original

clinical report on the subject was published by the American Academy

of Pediatrics (AAP) in 2001. 1 Education about sexuality that is provided

by pediatricians can complement the education children obtain at school

or at home, 2, 3 but many pediatricians do not address it. In a review of

health maintenance visits, 1 of 3 adolescent patients did not receive

any information on sexuality from their pediatrician, and if they did, the

conversation lasted less than 40 seconds. 4To cite: Breuner CC, Mattson G, AAP COMMITTEE ON ADO-

LESCENCE, AAP COMMITTEE ON PSYCHOSOCIAL ASPECTS OF

CHILD AND FAMILY HEALTH. Sexuality Education for Children

and Adolescents. Pediatrics. 2016;138(2):e20161348

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FROM THE AMERICAN ACADEMY OF PEDIATRICS

BACKGROUND

Children and adolescents with and

without chronic health conditions

and disabilities will benefit when

they are provided with accurate

and developmentally appropriate

information about the biological,

sociocultural, psychological,

relational, and spiritual dimensions

of sexuality. Information about

sexuality can be taught and shared

in schools, communities, homes,

and medical offices using evidence-

based interventions. Children

and adolescents should be shown

how to develop a safe and positive

view of sexuality through age-

appropriate education about their

sexual health. Sexuality education

can be disseminated through the

3 learning domains: cognitive

(information), affective (feelings,

values, and attitudes), and behavioral

(communication, decision-making,

and other skills). 5

Sexuality education is more than

the instruction of children and

adolescents on anatomy and the

physiology of biological sex and

reproduction. It covers healthy

sexual development, gender

identity, interpersonal relationships,

affection, sexual development,

intimacy, and body image for all

adolescents, including adolescents

with disabilities, chronic health

conditions, and other special needs. 6

Developing a healthy sexuality is a

key developmental milestone for

all children and adolescents that

depends on acquiring information

and forming attitudes, beliefs,

and values about consent, sexual

orientation, gender identity,

relationships, and intimacy. 7 Healthy

sexuality is influenced by ethnic,

racial, cultural, personal, religious,

and moral concerns. Healthy

sexuality includes the capacity to

promote and preserve significant

interpersonal relationships; value

one’s body and personal health;

interact with both sexes in respectful

and appropriate ways; and express

affection, love, and intimacy in ways

consistent with one’s own values,

sexual preferences, and abilities.

The various dimensions of healthy

sexuality comprise the anatomy,

physiology, and biochemistry

of the sexual response system;

identity, orientation, roles, and

personality; and thoughts, feelings,

and relationships. 6 Ideally, children

and adolescents receive accurate

information on sexual health from

multiple professional resources. 8, 9

All children and adolescents need

to receive accurate education about

sexuality to understand ultimately

how to practice healthy sexual

behavior. Unhealthy, exploitive, or

risky sexual activity may lead to

health and social problems, such as

unintended pregnancy and sexually

transmitted infections (STIs),

including gonorrhea, Chlamydia,

syphilis, hepatitis, herpes, human

papilloma virus (HPV); HIV infection;

and AIDS. 10 From a 2012 informative

report by the National Campaign

to Prevent Teen and Unplanned

Pregnancy that surveyed 1200 high

school seniors, many senior girls and

boys reported having mixed feelings

about the first time they had sex, with

more than three-quarters responding

that they would change the way their

first sexual experience occurred.

Interestingly, seniors in this study

wanted their younger peers to know

it was “fine to be a virgin” when they

graduated from high school. 11

It has been demonstrated that

sexuality education interventions

can prevent or reduce the risk of

adolescent pregnancy HIV, and

STIs for children and adolescents

with and without chronic health

conditions and disabilities in

the United States. 12 Adolescent

sexual activity and teen births and

pregnancies have been decreasing

since 1991, with the exception of

2005 to 2007, when there was a

5% increase in birth rates. The

decrease in adolescent birth rates

in the United States reflects an

increased use of contraception at first

intercourse and in the use of dual

methods of condoms and hormonal

contraception in already sexually

active teenagers. 13 Nevertheless,

the United States continues to

lead industrialized countries with

the highest rates of adolescent

pregnancy. 14  Importantly, 88% of

births to adolescents 15 to 17 years

of age in the United States continued

to be unintended (unwanted or

mistimed). 15

Sexual health information

messages are received by children

and adolescents multiple times

throughout the day from the media,

religious organizations, schools, and

family peers, parents/caregivers, and

partners, although the quality of the

information varies. 16, 17 In an article

published in 2013 on how sexually

experienced adolescents in the

United States receive sexual health

information, parents and teachers

were the source of information

for 55% of girls and 43% of boys

about birth control and for 59%

of girls and 66% of boys about

STIs/HIV. 18 Only 10% of sexually

experienced adolescents reported

health care providers as a source of

birth control/STI/HIV information.

More than 80% of adolescents 15

to 19 years of age received formal

instruction about STIs, HIV, or how to

say "no" to sex between 2011-2013,

yet only 55% of males and 60% of

females received instruction about

birth control. 19 Strong support of

multilevel expanded and integrative

sex education is warranted now more

than ever.20

Delivery of Sexuality Education

Pediatricians/Health Care Providers

Pediatricians are in an excellent

position to provide and support

longitudinal sexuality education to

all children, adolescents, and young

adults with and without chronic

health conditions and disabilities as

part of preventive health care. Over

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PEDIATRICS Volume 138 , number 2 , August 2016

the past decade, increasing numbers

of adolescents contend with sexuality

in the context of their own chronic

physical or mental health condition

and/or developmental disability. 21, 22

When sexuality is discussed routinely

and openly during well-child visits

for all children and adolescents

in the pediatrician’s office,

conversations are easier to initiate,

more comfortable to continue, and

more effective and informative for

all participants. Pediatricians and

other primary care clinicians can

explore the expectations of parents

for their child’s sexual development

while providing general, factual

information about sexuality and can

monitor adolescent use of guidance

and resources offered over time.

Pediatricians can introduce issues of

physical, cognitive, and psychosexual

development to parents and their

children in early childhood and

continue discussions at ongoing

health maintenance visits throughout

school age, adolescence, and young

adulthood. Sharing this information

can help overcome barriers to

discussing the sexual development

of all children and adolescents and

to improve screening rates for STIs,

pregnancy, and partner violence. It is

also important to provide access to

current accurate sexuality education

and to provide access to confidential

relevant information, services,

and support over the course of a

lifetime. 18, 21 These conversations can

begin with questions the family might

have about the child and his or her

body as well as about self-stimulation

and “safe touch.” With insights

into the typical stages of child and

adolescent sexual development,

parents can better understand their

own child’s behaviors. For example,

by recognizing that masturbation

is typical toddler behavior, parents

can better understand and discuss

self-stimulatory behaviors of their

teenager. The problem is often the

inability to distinguish between

behaviors that are publicly and

privately appropriate as children

grow older. 23

Often, the pediatrician can take the

lead from the parent or caregiver

and then ask a few gentle leading

questions about how much

information the family would

like to receive with the child and

parent together in the room. The

dynamics of the sexuality education

conversation can then change as the

child becomes a young adolescent

by asking the parent or caregiver

to leave the room after the initial

introductions and history taking has

occurred with the parent in the room.

Parents and adolescents benefit from

being prepared for these changes in

adolescent interactions when there

will be time alone for the adolescent

to engage with the pediatrician to

discuss sexuality, as well as personal

and mental health, drug and tobacco

use, and other psychosocial issues.

The importance of confidentiality

and its role in adolescent health

care autonomy should be discussed

with both adolescents and their

parents. Unlike school-based

instruction, a conversation about

sexuality with pediatricians

can provide an opportunity for

personalized information, for

confidential screening of risks, and

for addressing risks and enhancing

existing strengths through health

promotion and counseling. Children

and adolescents may ask questions,

discuss potentially embarrassing

experiences, or reveal highly

personal information to their

pediatricians. Families and children

may obtain education together or in

a separate but coordinated manner.

Prevention and counseling can

be targeted to the needs of youth

who are and those who are not yet

sexually active and to groups at high

risk of early or unsafe sexual activity,

which includes children with and

without chronic health conditions

and disabilities.

Use of a psychosocial behavior

screening tool or the Bright Futures

Previsit Questionnaire (available

at https:// brightfutures. aap. org/

Bright%20 Futures%20 Documents/

CoreTools11- 14YearOCVisit.

pdf) is a good way to address

all of these topics, in addition to

physical activity, nutrition, school,

and relationships. The AAP policy

statement on providing care for

lesbian, gay, bisexual, transgender,

and questioning youth, as well as

other resources, offer suggestions

on how to incorporate important

conversations about sexual and

gender identity in the health

supervision visit. 24 – 26

In the office setting, children and

adolescents have been shown to

prefer a pediatrician who is open

and nonjudgmental and comfortable

with discussions to address

knowledge, questions, worries,

or misunderstandings among

children, adolescents with and

without chronic health conditions

and disabilities, and their parents/

caregivers related to a wide range

of topics. These topics include,

but are not limited to, anatomy,

masturbation, menstruation,

erections, nocturnal emissions

(“wet dreams”), sexual fantasies,

sexual orientation, and orgasms.

Information regarding availability

and access to confidential sexual

and reproductive health services

and emergency contraception

is important to discuss with

adolescents and with parents. During

these discussions, pediatricians also

can address homosexual or bisexual

experiences or orientation, including

topics related to gender identity. It

is also important to acknowledge

the influence of media imagery

on sexuality as it is portrayed in

music and music videos, movies,

pornography, and television,

print, and Internet content and to

address the effects of social media

and sexting. According to the US

Preventive Services Task Force,

intensive behavioral counseling

is important for all sexually active

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FROM THE AMERICAN ACADEMY OF PEDIATRICS

adolescents and for adults who are

at increased risk of STIs. 27 Although

there may not be time to address all

of these topics in a brief office visit,

the longitudinal relationship and

annual well visit present several

opportunities for discussion. In

addition, more information and

resources can be shared with

adolescents, many of which are easily

accessible and listed at the end of this

report.

Most adolescents have the

opportunity to explore intimacy and

sexuality in a safe context, but some

others experience coercion, abuse,

and violence. In fact, unwanted first

sexual encounters were reported

in the National Survey of Family

Growth among 11% of female

and male subjects 18 to 24 years

of age who had first intercourse

before age 20 years. 28 Teenagers

who report first sex at 14 years of

age and younger are more likely

to report that it was nonvoluntary,

compared with those who were 17

to 19 years of age at sexual debut. 29

Unwanted encounters may include

dating violence, stranger assaults,

and intrafamilial sexual abuse/incest.

Screening for sexual violence and

nonconsensual sexual encounters

is important when evaluating all

sexually active adolescents, especially

for adolescents with chronic health

conditions and disabilities, because

they may be more likely to be victims

of sexual abuse. 5, 30

In the Schools

Formal sexuality education in

schools that includes instruction

about healthy sexual decision-

making and STI/HIV prevention

can improve the health and well-

being of adolescents and young

adults. 31 If comprehensive sexuality

education programs are offered in

the schools, positive outcomes can

occur, including delay in the initiation

and reduction in the frequency of

sexual intercourse, a reduction in the

number of sexual partners, and an

increase in condom use. 12, 32 Some

studies also have shown less truancy

and an improvement in academic

performance in those who have taken

sexuality education courses. 33

A student’s experience in school

with sexuality education can

vary a great deal. The Sexuality

Information and Education Council

of the United States and the Future

of Sex Education (FoSE) promote

evidence-informed comprehensive

school-based sexuality education

appropriate to students’ age,

developmental abilities, and cultural

background as an important part

of the school curriculum at every

grade. 34 A comprehensive sexuality

program provides medically accurate

information, recognizes the diversity

of values and beliefs represented in

the community, and complements

and augments the sexuality education

children receive from their families,

religious and community groups,

and health care professionals.

Adolescents and most parents agree

that school-based programs need

to be an important source of formal

education for adolescent sexual

health. 35 – 37

The protective influence of sexuality

education is not limited to the

questions about if or when to have

sex, but extends to issues of partner

selection, contraceptive use, and

reproductive health outcomes. 38

Creating access to medically

accurate comprehensive sexuality

education by using an evidence-

based curriculum and reducing

sociodemographic disparities in

its receipt remain a primary goal

for improving the well-being of

teenagers and young adults. Ideally,

this education happens conjointly in

the home and in the school. 39

Factors that shape the content and

delivery of sexuality education

include state and school district

policies, state education standards,

funding from state and federal

sources, and individual teacher

comfort, knowledge, and skills. Fewer

than half of states require public

schools to teach sexuality education,

and even fewer states require

that, if offered, sexuality education

must be medically, factually, or

technically accurate. State definitions

of “medically accurate” vary, from

requiring that the department

of health review curriculum

for accuracy to mandating that

curriculum be based on published

medical information. 40

Two-thirds of states and the District

of Columbia allow parents to remove

their children from participation or

opt out from sexuality education.

Fewer than half of states and

the District of Columbia require

parents to be notified that sexuality

education will be provided. Other

states have specific content

requirements, including “stressing

abstinence” or precluding discussion

of homosexuality or abortion. 41

The status of sexuality education in

private schools is less well known.

There is little to no information

available from parochial or private

scholastic institutions on the

provisions of sexuality education.

Although policies exist requiring

sexuality education, it may not

be occurring in an unbiased and

systematic manner. From the 2012

School Health Policies and Practices

Survey, only 71% of US high school

districts have adopted a policy

specifying that human sexuality is

taught. In a separate study comparing

high schools, middle schools, and

elementary schools, sexuality

education taught in middle schools

across states was more likely to

be focused on “how to say no to

sex” rather than other topics, with

approximately 1 in 5 teenagers

reporting that they first received

instruction on “how to say no to sex”

while in the first through fifth grade.

Adolescent boys were slightly more

likely than girls to be instructed on

how to say no to sex or were using

birth control while in middle school

(52% of male teenagers, compared

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PEDIATRICS Volume 138 , number 2 , August 2016

with 46% of female teenagers).

Male teenagers were less likely than

female teenagers to report first

receiving instruction on methods of

birth control while in high school

(38% of male teenagers, compared

with 47% of female teenagers). 42

Teacher training in the United

States is quite variable from district

to district and school to school

especially in sexuality education.

The FoSE Initiative has released

the National Teacher Preparation

Standards for Sexuality Education

to provide guidance to institutions

of higher education to better

prepare future teachers. 9 The

FoSE teacher standards include

professional disposition, diversity

and equity, content knowledge, legal

and professional ethics, planning,

implementation, and assessment.

According to these standards,

teachers may benefit from receiving

specialized training on human

sexuality, which includes accurate

and current knowledge about

biological, social, and emotional

stages of child and adolescent sexual

development (including sexual

orientation) and legal aspects of

sexuality (ie, age of consent).

Professionals responsible for

sexuality education may benefit from

receiving training in several learning

and behavior theories and how to

provide age- and developmentally

appropriate instruction as part of

sexuality education lesson planning.

Ideally, teachers would be familiar

with relevant and current state

and/or district laws, policies, and

standards to help them choose

and adapt an evidence-based and

scientifically accurate curriculum

that is appropriate and permissible

within a school district. Ongoing

professional development and

participation in continuing education

classes or intensive seminars is

advised. Teachers can benefit from

access to updated and current

sexuality information, curricula,

policies, laws, standards, and other

materials. The FoSE standards advise

that teachers are aware of and take

into account their own biases about

sexuality, understand guidelines

for discussion of sensitive subjects

in the classroom and addressing

confidentiality, and know how to

address disclosure by students of

sexual abuse, incest, dating violence,

pregnancy, and other associated

sexual health issues. The goal is for

teachers to feel comfortable and

committed to discussing human

sexuality and to know how to

conduct themselves appropriately

with students as professionals both

inside and outside of the classroom

and school. It is important for

teachers to have an appreciation for

how students’ diverse backgrounds

and experience may affect students’

personal beliefs, values, and

knowledge about sexuality. In the

United States, 35.5% of districts

have adopted a policy stating that

there is a requirement that those

who teach health education must

earn continuing education credits

on strategies or on health-related

topics. It is important for teachers

to develop skills in creating a safe,

respectful, and inclusive classroom. 41

In the Home

Fundamentally, parents and

caregivers can have an important

role as their children’s primary

sexuality educators. However, a

number of factors, including lack of

knowledge, skills, or comfort, may

impede a parent’s or caregiver’s

successful fulfillment of that role.

Health care providers, schools,

faith-based institutions, the

media, and professional sexuality

educators are resources that guide

and advise parents by providing

training, resources, understanding,

and encouragement. One program,

"Talking Parents, Healthy Teens, "

aims to influence parents’ skills,

such as communication, monitoring,

and involvement. These include

intentions to talk about sex, to

monitor and stay involved, and

to understand environmental

barriers and facilitators that

influence talking about sexuality (eg,

community norms that discourage or

encourage such communication). 43

By increasing parents’ skills and

facilitating opportunities for

communication through take-home

activities, the program also aims

to affect the parent-adolescent

relationship, further influencing

adolescent behavior change (eg, the

likelihood that adolescents will delay

intercourse or use condoms). 44

In one study, adolescents were

asked whether they received formal

instruction on 4 topics of sexuality

education at home, school, church,

a community center, or some other

place before they were 18 years old. 42

They were specifically asked whether

they spoke to their parents before

the age of 18 about topics concerning

sex, birth control, STIs, and HIV/AIDS

prevention. Two-thirds of male and

80% of female adolescents reported

having talked with a parent about at

least 1 of 6 sexuality education topics

(“how to say no to sex, ” methods of

birth control, STIs, where to get birth

control, how to prevent HIV/AIDS,

and how to use a condom). Younger

(15–17 years old) female teenagers

were more likely (80%) than younger

male teenagers (68%) to have talked

to their parents about these topics. 42

The medical literature supports that

family and parental characteristics

can dictate patterns of sexual

experience among teenagers, as

shown in the National Survey of

Family Growth data from 2006 to

2010. 28 For example, in both male

and female teenagers, a significantly

smaller percentage were sexually

experienced if they lived with both

parents when they were 14 years

of age, if their mothers had their

first birth at 20 years or older, if

the teenager’s mother was a college

graduate, or if the teenager lived

with both of his or her parents. 28

Further, the approaches parents take

when talking with their adolescent

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FROM THE AMERICAN ACADEMY OF PEDIATRICS

about sex may have a tremendous

influence on the teenager. 45 Parents

who dominate the conversation have

teenagers who do not have as much

knowledge. Conversely, parents who

are engaged and comfortable talking

about sexual health have teenagers

who are more knowledgeable and

may even be more proactive in

seeking reproductive health medical

services. 45

A review of 12 studies on parental

communication about sex revealed

that parents who received training on

this topic had better communication

with their adolescents about

sexuality compared with those who

did not. 46 Parental conversations

with their adolescents about

sexuality education is correlated with

a delay in sexual debut and increased

use of contraception and condoms. 47

Jaccard and Levitz 45 identified

multiple effective components in

parent-adolescent sexual health

communication, including (1)

the extent of communication as

measured by frequency and depth

of discussions, (2) informational

style, (3) the content of data that

is discussed, (4) when and how

the communication occurs, and (5)

the overall environment where the

conversation takes place.

Discussions of sexuality do not occur

equally among mothers and fathers.

One review found that overall, the

number of discussions parents

have with teenagers about sex has

decreased from 1995 to 2002. 48

From a separate review covering

1980 through July 2010, mothers

were the primary discussant in

all interventions. 49 In reviewing

the role of fathers in sexual health

discussions, Kirkman et al 50 found

that fathers recognized, by self-

report, that they need to share

the role of communication about

this topic with their teenagers but

that they leave the conversation to

the mothers more often than not.

Although mothers can also effectively

teach their sons about sexuality, 51

the relationship boys have with their

fathers or other male role models

plays a crucial role in their sexual

health, including reducing sexual

risk taking and delaying initiation

of sexual intercourse, especially in

those boys with a connection to their

fathers, whether they live in the same

home or not.52, 53

It is clear that parents would

benefit from support to improve

communication with their

adolescents about sex.

ABSTINENCE EDUCATION

We know that abstinence is 100%

effective at preventing pregnancy

and STIs; however, research has

conclusively demonstrated that

programs promoting abstinence-

only until heterosexual marriage

occurs are ineffective. 54 – 57 A recent

systematic review examined the

evidence supporting both abstinence-

only programs and comprehensive

sexuality education programs

designed to promote abstinence from

sexual intercourse. In that review,

most comprehensive sexuality

education programs showed

efficacy in delaying initiation of

intercourse in addition to promoting

other protective behaviors, such as

condom use. There was no evidence

that abstinence-only programs

effectively delayed initiation of

sexual intercourse.57 In another

review of sexuality education,

Cavazos-Rehg et al 35 found that the

literature examining the efficacy

of current school-based sexuality

education programs had insufficient

evidence to support the intervention

of abstinence on the basis of

inconsistent results across studies.

The federal government has

historically provided $178 million for

abstinence-only education through

Title V, Section 510 of the Social

Security Act in 1996, Community-

Based Abstinence Education projects

through the Patient Protection

and Affordable Care Act, and the

Adolescent Family Life Act program.

The Community-Based Abstinence

Education program received the

most federal funds and made

direct grants to community-based

organizations, including faith-based

organizations. Federal guidance

required all programs to adhere to an

8-point definition of abstinence-only

education and prohibited programs

from disseminating information

on contraceptive services, sexual

orientation and gender identity, and

other aspects of human sexuality.

Programs promoted exclusive

abstinence outside of heterosexual

marriage and required that

contraceptive use, contraceptive

methods, and specifically condoms

must not be discussed except to

demonstrate failure rates. 58

The Obama administration’s

proposed budget for fiscal year

2014 created funding for programs

that have been proven effective in

reducing teen pregnancy, delaying

sexual activity, or increasing

contraceptive use. 32, 59 – 61 There are

still Title V–funded programs for

abstinence-only programs in the

schools and in other places in the

community. However, most public

funding now supports evidence-

informed interventions that have

been proven to delay onset of sexual

activity, reduce numbers of partners,

increase condom and contraceptive

use, and decrease incidence of teen

pregnancy and STIs, including

HIV.32, 59 – 61 Private and parochial

schools also have their own standards/

polices and limited funding stream

for sexuality education. 57

In a 2005 study by Brückner and

Bearman, 62 a review of Add Health

data suggested that many teenagers

who take a “virginity pledge” and

intend to be abstinent before

marriage fail to do so and that

when these teenagers do initiate

intercourse, they fail to protect

themselves by using contraception.

In a review of the virginity pledge

movement, these researchers found

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PEDIATRICS Volume 138 , number 2 , August 2016

that 88% of teenagers who took the

pledge had initiated intercourse

before marriage, compared with 99%

of those who did not take the pledge.

They also found that teenagers who

took the pledge were less likely to use

contraception after they did initiate

sexual intercourse and not to seek

STI screening. At 6-year follow-up,

the prevalence of STIs (Chlamydia,

gonorrhea, trichomoniasis, and HPV

infection) was comparable among

those who took the abstinence pledge

and those who did not. 62

The American College of

Obstetricians and Gynecologists, the

Society for Adolescent Health and

Medicine, the AAP, the American

Medical Association, the American

Public Health Association, National

Education Association, and the

National School Boards Association

oppose abstinence-only education

and endorse comprehensive sexuality

education that includes both

abstinence promotion and accurate

information about contraception,

human sexuality, and STIs. 62 – 67

CLINICAL GUIDANCE FOR PEDIATRICIANS

1. The pediatrician should

encourage early parental

discussion with children at home

about sexuality, contraception,

and Internet and social

media use that is consistent

with the child’s and family’s

attitudes, values, beliefs, and

circumstances.

2. Diverse family circumstances,

such as families with same-

sex parents or children who

identify as lesbian, gay, bisexual,

transgender, or questioning,

create unique guidance needs

regarding sexuality education.

3. Modeling ways to initiate talks

about sexuality with children at

pertinent opportunities, such

as the birth of a sibling can

encourage parents to answer

children's questions fully and

accurately.

4. Parents and adolescents are

encouraged to receive information

from multiple sources, including

health care providers and

sexuality educators, about

circumstances that are associated

with earlier sexual activity.

Adolescents are encouraged to feel

empowered through discussing

strategies that allow for practicing

social skills, assertiveness, control,

and rejection of unwanted sexual

advances and cessation of sexual

activity when the partner does not

consent.

5. Discussions regarding healthy

relationships and intimate

partner violence can be effectively

included in health care visits.

6. Pediatricians are encouraged to

acknowledge that sexual activity

may be pleasurable but also

must be engaged in responsibly.

7. Specific components of sexuality

education offered in schools,

religious institutions, parent

organizations, and other

community agencies vary

based on many factors. The

pediatrician can serve as a

resource to each.

8. School-based comprehensive

sexuality education that

emphasizes prevention of

unintended pregnancy and STIs

should be encouraged.

9. The discussion of methods

of contraception and STI and

HPV cancer prevention with

male and female adolescents

is encouraged before the onset

of sexual intercourse (see the

AAP statement “Contraception

and Adolescents”). It is also

important to discuss consistent

use of safer sex precautions with

sexually active teens. Bright

Futures recommendations can

be used.

10. Abstinence is the most effective

strategy for preventing HIV

infection and other STIs, as well

as for prevention of pregnancy.

11. Preparation for college entry

is an excellent opportunity for

pediatricians to address issues

such as the effects of alcohol,

marijuana, and other drug

consumption on decisions about

safe, consensual sexual practices.

12. Children and adolescents with

special issues and disabilities

may benefit from additional

counseling, referrals, and sharing

of online resources listed at the

end of this report.

ONLINE SEXUALITY EDUCATION RESOURCES

School and Community

• United Nations Population

Fund: http:// www. unfpa. org/

public/ home/ adolescents/ pid/

6483. Advocates for and supports promotion of comprehensive sexuality education, provides programming guidance for both school and community settings, and advocates for wider educational opportunities for all young people and partners with civil society organizations.

• The National Alliance to Advance

Adolescent Health: http:// www.

thenationalallian ce. org/ . Uses resources, advocacy, collaboration, and research to improve and increase access to integrated physical, behavioral, and sexual health care for adolescents.

• The Future of Sexuality

Education (FoSe): http:// www.

futureofsexed. org/ documents/

josh- fose- standards- web. pdf.

Developed the National Sexuality Education Standards for teachers to standardize and improve the quality of sexuality education provided in

schools.

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FROM THE AMERICAN ACADEMY OF PEDIATRICS

• Sexuality Information and

Education Council of the

United States: http:// www.

sexedlibrary. org/ index. cfm. A resource for educators, counselors, administrators, and health professionals about human sexuality research, lesson plans, and professional development. The SexEd Library is a comprehensive online collection of lesson plans relate to sexuality education.

• Sexual Education: Get Real: http://

www. getrealeducation. org. Get Real: Comprehensive Sex Education is a unique curriculum designed for implementation in both middle and high schools. Information provided is medically accurate and age-appropriate and can reinforce family communication and improve communication skills for healthy relationships.

• Centers for Disease Control and

Prevention Health Education

Curriculum Analysis Tool: http://

www. cdc. gov/ healthyyouth/

hecat/ pdf/ HECAT_ Module_

SH. pdf. The Health Education Curriculum Analysis Tool can help school districts, schools, and others conduct a clear, complete, and consistent analysis of health education curricula based on the National Health Education Standards and the Centers for Disease Control and Prevention’s Characteristics of an Effective Health Education Curriculum. The Health Education Curriculum Analysis Tool can help schools select or develop appropriate and effective health education curricula and can be customized to meet local community needs and conform to the curriculum requirements of the state or school district.

Health Care Providers

• Bright Futures: http://

brightfutures. aap. org/ pdfs/

Guidelines_ PDF/ 9- Promoting-

Healthy- Sexual- Development. pdf.

Preventive health information and

recommendations about promoting healthy sexual development and sexuality to help health care providers during health supervision visits from early childhood through adolescence.

• The Community Preventive

Services Task Force: http://

www. thecommunityguide

. org/ hiv/ RRriskreduction.

html. Recommendations about interventions to promote behaviors that prevent or reduce the risk of pregnancy, HIV, and other STIs in adolescents.

• American Congress of Obstetricians

and Gynecologists: http:// www.

acog. org/ About- ACOG/ ACOG-

Departments/ Adolescent- Health-

Care. Information and resources about adolescent sexuality and sex education.

Youth

• Scarleteen: http:// www. scarleteen.

com/ . Scarleteen is an independent, grassroots sexuality education and support organization and Web site. Founded in 1998, Scarleteen.com is visited by approximately three-quarters of a million diverse people each month worldwide, most between the ages of 15 and 25. It is the highest-ranked Web site for sex education and sexuality advice online and has held that rank through most of its tenure.

• Sex, etc: http:// sexetc. org/ .

Sexetc.org has comprehensive sex

education information, including

the following:

⚬ Stories written by teen

staff writers and national

contributors.

⚬ Opportunities to get involved

and make a difference on sexual

health issues.

⚬ The Sex, etc. blog, which

addresses timely and relevant

news.

⚬ Forums where teens can

participate in moderated

discussions with other teens.

⚬ “Sex in the States, ” which is a

state-by-state guide to teens’

rights to sex education, birth

control, and more.

⚬ Videos about sexual health.

⚬ A sex terms glossary of almost

400 terms.

• Love is Respect: http:// www.

loveisrespect. org/ . Loveisrespect is a project of the National Domestic Violence Hotline and Break the Cycle. By combining our resources and capacity, we are reaching more people, building more healthy relationships, and saving more lives.

Youth With Disabilities

• Parent Advocacy Coalition

for Educational Rights: www.

pacer. org. Parent training and information center for families of children and youth with all disabilities from birth through 21 years old. Parents can find publications, workshops, and other resources about a number of topics, including sexuality and disabilities.

• Your Child Development and

Behavioral Resources: www.

med. umich. edu/ 1libr/ yourchild/

disabsex. htm. A program at the University of Michigan that houses a resource list of materials and Web sites about sexuality education for youth with disabilities for families as well as for teachers, and providers.

• Center for Parent Information

and Resources: http:// www.

parentcenterhub. org/ repository/

sexed/ . Contains information about sexuality education for students with disabilities for use with parents and teachers. The site also contains information about specific disabilities and sexuality, such as autism spectrum disorders, cerebral palsy, and spina bifida.

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PEDIATRICS Volume 138 , number 2 , August 2016

Advocacy

• United Nations Population

Fund: http:// www. unfpa. org/

public/ home/ adolescents/ pid/

6483. Advocates for and supports promotion of comprehensive sexuality education, provides programming guidance for both school and community settings, and advocates for wider educational opportunities for all young people and partners with civil society organizations.

• National Alliance to Advance

Adolescent Health: http:// www.

thenationalallian ce. org/ . Uses resources, advocacy, collaboration, and research to improve and increase access to integrated physical, behavioral, and sexual health care for adolescents.

• Futures Without Violence: http://

www. futureswithoutvio lence.

org/ . Uses advocacy, collaboration, and training with policy makers; health care, legal, and educational professionals; and others to improve responses to violence and abuse against women and children.

• Advocates for Youth: http://

www. advocatesforyouth . org/ sex-

education- home. Leads efforts that help young people make informed and responsible decisions about their reproductive and sexual health and focuses its work on young people ages 14 to 25 in the United States and around the globe. There are a number of resources for multiple audiences on the Sex Education home page.

• The National Campaign to Prevent

Teen and Unplanned Pregnancy:

http:// thenationalcampai gn. org/

featured- topics/ sex- education-

and- effective- programs. A series of resources that relate to sex education and a database of those sex education programs and interventions that work as well as online curricula that can be used with various audiences, including teens, college students, and others.

LEAD AUTHORS

Cora C. Breuner, MD, MPH

Gerri Mattson, MD, MSPH

COMMITTEE ON ADOLESCENCE, 2015–2016

Cora C. Breuner, MD, MPH, FAAP, Chairperson

William P. Adelman, MD, FAAP

Elizabeth M. Alderman, MD, FSAHM, FAAP

Robert Garofalo, MD, FAAP

Arik V. Marcell, MD, MPH, FAAP

Makia E. Powers, MD MPH, FAAP

Krishna Kumari Upadhya, MD, FAAP

LIAISONS

Laurie L. Hornberger, MD, MPH, FAAP – Section on

Adolescent Health

Margo Lane, MD, FRCPC, FAAP – Canadian

Pediatric Society

Benjamin Shain, MD, PhD – American Academy of

Child and Adolescent Psychiatry

Julie Strickland, MD – American College of

Obstetricians and Gynecologists

Lauren B. Zapata, PhD, MSPH – Centers for

Disease Control and Prevention

STAFF

Karen S. Smith

James D. Baumberger, MPP

COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, 2015–2016

Michael W. Yogman, MD, FAAP, Chairperson

Nerissa S. Bauer, MD, MPH, FAAP

Thresia B. Gambon, MD, FAAP

Arthur Lavin, MD, FAAP

Keith M. Lemmon, MD, FAAP

Gerri Mattson, MD, FAAP

Jason R. Rafferty, MD, MPH, EdM

Lawrence S. Wissow, MD, MPH, FAAP

CONSULTANT

George J. Cohen, MD

LIAISONS

Sharon Berry, PhD, LP – Society of Pediatric

Psychology

Terry Carmichael, MSW – National Association of

Social Workers

Edward R. Christophersen, PhD, FAAP – Society of

Pediatric Psychology

Norah L. Johnson, PhD, RN, CPNP-BC – National

Association of Pediatric Nurse Practitioners

Leonard R. Sulik, MD – American Academy of

Child and Adolescent Psychiatry

STAFF

Stephanie Domain, MS, CHES

Tamar M. Haro

ABBREVIATIONS

AAP:  American Academy of

Pediatrics

FoSE:  Future of Sex Education

Initiative

HPV:  human papillomavirus

STI:  sexually transmitted

infection

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HEALTHCOMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY

Cora C. Breuner, Gerri Mattson, COMMITTEE ON ADOLESCENCE andSexuality Education for Children and Adolescents

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HEALTHCOMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY

Cora C. Breuner, Gerri Mattson, COMMITTEE ON ADOLESCENCE andSexuality Education for Children and Adolescents

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POLICY STATEMENT

Contraception for Adolescents

abstractContraception is a pillar in reducing adolescent pregnancy rates. TheAmerican Academy of Pediatrics recommends that pediatricians de-velop a working knowledge of contraception to help adolescents reducerisks of and negative health consequences related to unintended preg-nancy. Over the past 10 years, a number of new contraceptive methodshave become available to adolescents, newer guidance has been issuedon existing contraceptive methods, and the evidence base for contracep-tion for special populations (adolescents who have disabilities, areobese, are recipients of solid organ transplants, or are HIV infected)has expanded. The Academy has addressed contraception since 1980,and this policy statement updates the 2007 statement on contraceptionand adolescents. It provides the pediatrician with a description and ra-tionale for best practices in counseling and prescribing contraceptionfor adolescents. It is supported by an accompanying technical report.Pediatrics 2014;134:e1244–e1256

INTRODUCTION

Pediatricians play an important role in adolescent pregnancy pre-vention and contraception. Nearly half of US high school studentsreport ever having had sexual intercourse.1 Each year, approximately750 000 adolescents become pregnant, with more than 80% of thesepregnancies unplanned, indicating an unmet need for effective con-traception in this population.2,3 Although condoms are the most fre-quently used form of contraception (52% of females reported condomuse at last sex), use of more effective hormonal methods, includingcombined oral contraceptives (COCs) and other hormonal methods,was lower, at 31% and 12%, respectively, in 2011.1 Use of highly ef-fective long-acting reversible contraceptives, such as implants or in-trauterine devices (IUDs), was much lower.1

Adolescents consider pediatricians and other health care providersa highly trusted source of sexual health information.4,5 Pediatricians’long-term relationships with adolescents and families allow them toask about sensitive topics, such as sexuality and relationships, and topromote healthy sexual decision-making, including abstinence andcontraceptive use for teenagers who are sexually active. Additionally,medical indications for hormonal contraception, such as dysmenor-rhea, heavy menstrual bleeding or other abnormal uterine bleeding,acne, and polycystic ovary syndrome, are often uncovered duringadolescent visits. A working knowledge of contraception will assist thepediatrician in both sexual health promotion and treatment of common

COMMITTEE ON ADOLESCENCE

KEY WORDScontraception, adolescent, birth control, intrauterine device,contraceptive implant, oral contraceptive pills, contraceptiveinjection

ABBREVIATIONSAAP—American Academy of PediatricsACOG—American College of Obstetricians and GynecologistsBMD—bone mineral densityCDC—Centers for Disease Control and PreventionCOC—combined oral contraceptiveDMPA—depot medroxyprogesterone acetateEC—emergency contraceptionFDA—Food and Drug AdministrationHIPAA—Health Insurance Portability and Accountability ActIUD—intrauterine deviceLARC—long-acting reversible contraceptionPID—pelvic inflammatory diseaseSTI—sexually transmitted infection

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authorshave filed conflict of interest statements with the AmericanAcademy of Pediatrics. Any conflicts have been resolved througha process approved by the Board of Directors. The AmericanAcademy of Pediatrics has neither solicited nor accepted anycommercial involvement in the development of the content ofthis publication.

The guidance in this statement does not indicate an exclusivecourse of treatment or serve as a standard of medical care.Variations, taking into account individual circumstances, may beappropriate.

All policy statements from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

www.pediatrics.org/cgi/doi/10.1542/peds.2014-2299

doi:10.1542/peds.2014-2299

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2014 by the American Academy of Pediatrics

e1244 FROM THE AMERICAN ACADEMY OF PEDIATRICS

Organizational Principles to Guide and Define the ChildHealth Care System and/or Improve the Health of all Children

adolescent gynecologic problems. Contra-ception has been inconsistently coveredas part of insurance plans. However, theInstitute of Medicine has recommendedcontraception as an essential componentof adolescent preventive care,6 and thePatient Protection and Affordable CareAct of 2010 (Pub L No. 111–148) requirescoverage of preventive services forwomen, which includes contraception,without a copay.7,8

SETTING THE STAGE

Confidentiality and Consent

In the setting of contraception and sexualhealth care, the American Academy ofPediatrics (AAP) believes that policiessupporting adolescent consent and pro-tecting adolescent confidentiality are inthe best interests of adolescents. Ac-cordingly, best practice guidelines rec-ommend confidentiality around sexualityand sexually transmitted infections (STIs)and minor consent for contraception.9–11

The majority of states have specific lawsregarding minor consent to contracep-tion (see State Minor Consent Laws:A Summary12 and the Guttmacher Insti-tute’s State Center13 at http://www.guttmacher.org/statecenter/ for reg-ularly updated state-by-state summaries).For states without specific laws, bestpractice guidelines, federal statutes, andfederal case law may support minorconfidentiality and consent.12 For exam-ple, family planning clinics funded byTitle X of the federal Public Health Ser-vices Act (42 USC xx300–300a-6 [1970])are required to provide confidentialservices to adolescents.12

The Health Insurance Portability andAccountability Act (HIPAA [Pub L No.104–191, 1996]) specifically addressesminor confidentiality. Although HIPAAallows parents access to a minor’srecords as personal representatives,that access is denied when the minor isprovided with confidentiality under stateor other laws or when the parent agreesthat the minor may have confidential

care.14 Therefore, the AAP recommendsthat pediatricians have an office policythat explicitly describes confidentialservices and that pediatricians discuss(and document) confidentiality with allparents and adolescents. As an addi-tional protection for minors’ confiden-tiality, HIPAA states that if there is noapplicable state law about the rightsof parents to access the protectedhealth information of their children,pediatricians (or other licensed healthprofessionals) may exercise their pro-fessional judgment to provide or denyparental access to the records.14 Thiscan be accomplished with careful docu-mentation of their professional judgment.

Insurance, billing, and electronic healthrecord systems create additionalchallenges, including maintaining theconfidentiality of visits, visit content,associated laboratory test results, andpayment for the contraceptive methoditself.15 For additional discussion ofelectronic health records, see the AAPpolicy statement on health informationtechnology.16

Careful attention to minor consent andconfidentiality is important, because lim-itations on confidentiality and consent arelinked to lower use of contraceptives andhigher adolescent pregnancy rates.17–21

Parents need not be adversaries; infact, many parents are supportive ofminor consent and confidentiality forsexual health services.22,23 As per-mitted by law, adolescent contraceptionshould be provided as a confidentialservice, with adolescents encouragedto involve parents or trusted adultsas they are able.

Sexual History Taking andCounseling

Bright Futures recommends that pedia-tricians take a developmentally targetedsexual history, assess STI and pregnancyrisk, and provide appropriate screening,counseling, and, if needed, contra-ceptives.24 Key to history taking is an

honest, caring, nonjudgmental attitudeand a comfortable, matter-of-fact ap-proach to asking questions. This canbe accomplished by assessing the 5 Psof sexual history taking, as describedby the Centers for Disease Control andPrevention (CDC): partners, preventionof pregnancy, protection from STIs, sex-ual practices, and past history of STIsand pregnancy.25 Counseling should drawon motivational interviewing approaches,with the focus of the interview on futuregoals, belief in the adolescents’ capacityto change, and engagement of theadolescent in the process of adoptinghealth-promoting behaviors.26 For anexample of motivational interviewingfor sexual health counseling, see Ottet al (2007),27 and for a more detaileddiscussion of counseling approaches,see the accompanying technical re-port.28

Counseling About Abstinence andContraception

Counseling about abstinence andpostponement of sexual intercourseis an important aspect of adolescentsexual health care. Abstinence is 100%effective in preventing pregnancy andSTIs and is an important part of con-traceptive counseling. Adolescents shouldbe encouraged to delay sexual onset untilthey are ready. However, existing datasuggest that, over time, perfect ad-herence to abstinence is low (ie, manyadolescents planning on abstinence donot remain abstinent).29,30 Therefore,pediatricians should not rely on absti-nence counseling alone but shouldadditionally provide access to com-prehensive sexual health informationto all adolescents. For sexually activeadolescents, including gay and lesbianadolescents,31 and those consideringinitiation of sexual activity, counselingadditionally includes initiating contra-ception, supporting adherence to thecontraceptive method, managing ad-verse effects, and providing periodicscreening for STIs.24

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METHODS OF CONTRACEPTION

This section summarizes the contra-ceptive options for adolescents; theaccompanying technical report pro-vides more detailed information oneach of the methods. When comparingthe efficacy of different methods, it isimportant to distinguish between typi-cal use and perfect use, and counselingshould be based on typical use. Typicaluse efficacy refers to the probabilityof pregnancy during the first year oftypical use and includes users withvarying degrees of adherence; perfectuse efficacy is the probability of preg-nancy if used consistently and correctlyevery time.32 The most effective meth-ods rely the least on individual adher-ence; for these methods, typical useeffectiveness approaches perfect useeffectiveness. Contraceptive methodsmost commonly used by adolescentsare listed below, ordered from most toleast effective, starting with long-actingreversible contraception (LARC): implantsand IUDs. Pediatricians are encouragedto counsel adolescents in that order,discussing the most effective contracep-tive methods first (see Table 1 for con-traceptive effectiveness).

Progestin Implants

Implanon and Nexplanon (Merck, White-house Station, NJ) are both single-rodimplants that contain etonogestrel,the active metabolite of the progestindesogestrel. Implants, a LARC method,are highly effective, with typical andperfect use failure rates of less than1%32,33; they may remain in place for3 years. The implant is inserted intothe inside of the upper arm by a clini-cian who has completed the requisitetraining. Implants are ideal for ado-lescents who prefer a method that doesnot require regularly scheduled ad-herence and who desire an extendedlength of protection. A common reasonfor discontinuation is unpredictablebleeding or spotting.34,35

Contraceptive implants can also beoffered to pregnant adolescents andprovided in the immediate postpartumperiod, while the adolescent is still inthe hospital. The American College ofObstetricians and Gynecologists (ACOG)and the CDC both support immediatepostpartum insertion of implants as asafe and effective practice that removesbarriers to care.36,37 The main theo-retical concern about contraceptiveimplant use in the postpartum periodis whether the progestin might havesome effect on breastfeeding; however,studies of contraceptive implant useamong breastfeeding women havegenerally found no effects on breast-feeding performance or infant healthand growth.38,39 When starting an im-plant, patients should be counseledthat a backup method (ie, condoms orabstinence) should be used for at least

the first week for contraceptive effi-cacy and that a condom should beused at all times for protection againstSTIs.

IUDs

IUDs inserted into the uterus also pro-vide long-acting reversible contracep-tion. Three IUDs currently are approvedin the United States: 2 levonorgestrel-releasing T-shaped IUDs (Mirena, 52 mglevonorgestrel, and Skyla, 13.5 mglevonorgestrel; Bayer HealthCare Phar-maceuticals Inc, Wayne, NJ) and acopper-containing T-shaped IUD (CopperT380-A, ParaGard; Teva North America,North Wales, PA). The 13.5-mg levonor-gestrel IUD is approved for 3 years,40 the52-mg levonorgestrel IUD is approvedfor 5 years,41 and the copper IUD isapproved for 10 years.42 Despite theirlow but increasing use in the United

TABLE 1 Contraceptive Method Efficacy

Method % of Women Experiencing anUnintended Pregnancy in the

First Year of Use

% of Women ContinuingUse at 1 Yeara

Typical Useb Perfect Usec

No method 85 85 —

Spermicides (foams, creams, gels,suppositories, and film)

28 18 42

Fertility awareness–based methods 24 — 47Withdrawal 22 4 46CondomFemale 21 5 41Male 18 2 43

Diaphragm 12 6 57Combined pill and progestin-only pill 9 0.3 67Contraceptive patch 9 0.3 67Contraceptive ring 9 0.3 67DMPA contraceptive injection 6 0.2 56IUDCopper T 0.8 0.6 78Levonorgestrel 0.2 0.2 80

Single-rod contraceptive implant 0.05 0.05 84Female sterilization 0.5 0.5 100Male sterilization 0.15 0.10 100

—, data not available.a Among couples attempting to avoid pregnancy, the percentage who continue to use a method for 1 y.b Among typical couples who initiate use of a method (not necessarily for the first time), the percentage who experiencean accidental pregnancy during the first year if they do not stop use for any other reason. Estimates of the probability ofpregnancy during the first year of typical use for spermicides, withdrawal, periodic abstinence, the diaphragm, the malecondom, the pill, and Depo-Provera are taken from the 1995 and 2002 National Survey of Family Growth, corrected forunderreporting of abortion; see the text for the derivation of estimates for the other methods.c Among couples who initiate use of a method (not necessarily for the first time) and who use it perfectly (bothconsistently and correctly), the percentage who experience an accidental pregnancy during the first year if they donot stop use for any other reason.

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States, IUDs are used extensively world-wide because they are safe and effectivemethods of contraception with typicaland perfect use failure rates of less than1%.43 The copper IUD can be used asemergency contraception (EC) within 5days of unprotected intercourse.43,44

Despite past concerns, IUDs are nowknown to be safe for nulliparous ado-lescents. IUDs themselves do not causetubal infertility in nulliparous women,45

and studies support a rapid return tofertility after IUD removal.46,47 The riskof pelvic infection with IUDs occursonly during insertion. Beyond the first21 days, IUDs do not increase rates ofSTIs or pelvic inflammatory disease(PID).48,49 Unless the adolescent is atvery high risk for STIs (eg, had sexwith a partner with known gonorrhea),screening for gonorrhea and chlamydiacan be performed on the day of in-sertion.50 Treatment, if needed, canbe subsequently provided without IUDremoval, because studies have dem-onstrated that, provided the patientimproves with treatment, both STIsand PID can be treated with the IUDin place.51,52 Contraindications to IUDplacement are limited to current pu-rulent cervicitis, gonorrhea, or chla-mydia, current PID and other currentpelvic infections (see “US Medical Eli-gibility Criteria for Contraceptive Use”for more extensive discussion).37 PastPID is not a contraindication to IUD use.HIV infection and immunosuppressionare also not contraindications to IUDuse.

IUDs can also be offered to pregnantadolescents and provided in the im-mediate postpartum period, while theadolescent is still in the hospital. Twosystematic reviews concluded that im-mediate postpartum insertion of IUDsis safe and effective,53,54 and both ACOGand the CDC support this practice.36,37,55

Studies have shown that many womenwho desire an IUD at the time of deliverydo not return for later insertion and

that immediate insertion of IUDs pro-vides similar contraceptive coverageas delayed insertion, even with higherexpulsion rates with immediate in-sertion.56,57

The emerging adolescent-specific dataon IUDs are promising. However, thereare some disadvantages. The limiteddata in adolescents suggest that ex-pulsion, which occurs in fewer than5% of women using IUDs, may occurmore frequently in younger women.58

Another concern is that more than half ofyoung nulliparous women report mod-erate to severe pain with insertion.59,60

Nonetheless, studies demonstrate IUDcontinuation rates in adolescents thatexceed those with other hormonalmethods and effective use of the levo-norgestrel IUD for menstrual suppres-sion in adolescent patients with complexmedical conditions.61–67

Progestin-Only InjectableContraception

Depot medroxyprogesterone acetate(DMPA, also known by the brand nameDepo-Provera; Pfizer, New York, NY) isa long-acting progestin that is given asa single injection every 13 weeks (upto 15 weeks) using a dose of either150 mg delivered intramuscularly or104 mg delivered subcutaneously. Manyhealth care providers schedule visitsevery 11 to 12 weeks for adolescentsto allow for missed or delayed visits.Both regimens have similar effective-ness and side effects68 and are highlyeffective in preventing pregnancy. Inthe first year of use, the probability ofbecoming pregnant with typical use isapproximately 6%.32 DMPA can be ini-tiated on the same day as the visit(“mid-cycle” or “quick” start) as longas the health care provider is reason-ably certain the adolescent is notpregnant. For additional details, seethe accompanying technical report andthe CDC’s 2013 “US Selected PracticeRecommendations for Contraceptive

Use.”52 When starting DMPA, patientsshould be counseled that a backupmethod (eg, condoms or abstinence)should be used for at least the firstweek for contraceptive efficacy andthat a condom should be used at alltimes for protection against STIs.

DMPA is convenient for many adoles-cents because of its ease of use. Otheradvantages include improvement indysmenorrhea and protection againstiron deficiency anemia and endome-trial cancer.69 DMPA is safe for mostpatients with chronic illness,37 is thoughtto raise the seizure threshold in ado-lescents with epilepsy,70 and may de-crease sickle cell crises.71,72

The major disadvantages of DMPA in-clude the need for an injection every13 weeks and the menstrual cycleirregularities that are present fornearly all patients initially. These men-strual irregularities typically improveover time73,74 and may be less likely toresult in discontinuation if patients arecounseled about these effects beforethe first injection.75,76 Other possible ad-verse effects include headache, mastalgia,hair loss, change in libido, and weightgain. Studies in both adolescents77 andadults78 suggest that weight gain statusat 6 months is a strong predictor of fu-ture excessive weight gain with ongoingDMPA use, but that weight gain does notoccur in all patients.79,80

DMPA causes reductions in bone min-eral density (BMD),81–83 and in 2004 theUS Food and Drug Administration (FDA)issued a black-box warning about therisk of decreased BMD among DMPAusers.84 Subsequent publications doc-ument a substantial recovery of BMDafter the patient discontinues DMPA,85–87

and ACOG, recognizing the risk of un-wanted pregnancy if women’s contra-ceptive options are limited, does notadvise limiting DMPA use to 2 years (incontrast to earlier concerns88) or rou-tinely monitoring bone density after thattime frame.89 Nonetheless, it remains

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important to consider other risk factorsfor osteoporosis and to tailor counselingand recommendations to each patient.All patients should be counseled aboutmeasures that promote skeletal health,such as daily intake of 1300 mg of cal-cium and 600 IU of vitamin D and regularweight-bearing exercise.90

Combined Oral Contraceptive Pills

COCs are the most popular methodof hormonal contraception for ado-lescents. COCs all contain a progestinand an estrogen. In almost every pill, theestrogen component is ethinyl estradiolin amounts varying from 10 to 50 μg.Many adolescent medicine experts be-gin with a COC containing 30 to 35 μgof ethinyl estradiol and a progestinsuch as levonorgestrel or norgestimate.However, any “low-dose” pill (ie, con-taining ethinyl estradiol 35 μg or less )can be used. Although inspection of theexternal genitalia and a vaginal swab orurine screen for STIs are recommendedpractices in the care of sexually activepatients,91 no gynecologic examinationis needed to determine eligibility forCOC use. Like other combined methodsincluding the contraceptive vaginal ringand transdermal patch, COCs can bestarted on the same day as the visit(“quick start”) in healthy, nonpregnantadolescents. Patients should be coun-seled that a backup method (ie, con-doms or abstinence) should be used forat least the first 7 days for contracep-tive efficacy and that a condom shouldbe used at all times for protectionagainst STIs. The CDC recommends pre-scribing up to 1 year of COCs at a time.52

Additionally, a routine follow-up visit 1 to3 months after initiating COCs is usefulfor addressing adverse effects or ad-herence issues.

COCs have few contraindications inhealthy female adolescents. They shouldnot be prescribed for patients withsevere and uncontrolled hypertension(systolic pressure ≥160 mm Hg or

diastolic pressure ≥100 mmHg), ongo-ing hepatic dysfunction, complicatedvalvular heart disease, migraines withaura or focal neurologic symptoms,thromboembolism or thrombophilia,complications of diabetes (ie, nephropathy,retinopathy, neuropathy, or other vas-cular disease), and complicated solidorgan transplantation.37 The most se-rious adverse event associated with COCuse is the increased risk of blood clots,which increases from 1 per 10 000 to3 to 4 per 10 000 woman-years duringCOC use.92,93 In comparison, the in-cidence of venous thromboembolismassociated with pregnancy and post-partum is 10 to 20 per 10 000 woman-years, of which 1% to 2% are fatal.94,95

Although smoking should be discouraged,it is not a contraindication to COC usein teenagers and adults younger than35 years old.37

Patients should be informed that com-mon transient adverse effects of COCsinclude irregular bleeding, headache,and nausea. Recommendations formanaging adverse effects have beenpublished elsewhere96 or can be foundonline (http://www.managingcontraception.com/qa/index.php or http://www.cdc.gov/mmwr/preview/mmwrhtml/rr6205a1.htm?s_cid=rr6205a1_w).52

Drug interactions should also beavoided. With medications that de-crease COC effectiveness (eg, anti-convulsants and antiretroviral drugs),patients may benefit from choosingan alternative method or dosing97 (seethe accompanying technical report foradditional details). Most broad-spectrumantibiotics (rifampin is an exception) donot affect the contraceptive effectivenessof COCs.37

Typical use failure rates are 9% inadults and may be higher in adoles-cents.32,98 Counseling should includestrategies to promote daily adher-ence, such as cell phone alarms andsupport from a family member orpartner. Patients should be instructed

on what to do if pills are missed. Amissed pill should be taken as soon asit is remembered. If more than 1 pill ina row is missed, only the most recentlymissed pill should be taken as soonas possible, and the remaining pillsshould be taken at the usual time.Patients should be reminded that 7consecutive hormone pills are neededto prevent ovulation. Additional instruc-tions can be accessed online (http://www.cdc.gov/mmwr/preview/mmwrhtml/rr6205a1.htm?s_cid=rr6205a1_w#Fig2).52

EC is indicated if 2 or more pills aremissed in the first week of the cycle.99,100

EC should also be considered if 1 ormore pills were missed earlier in thesame cycle as a missed pill or late inthe previous cycle (see online instruc-tions provided earlier for details).

Many patients may benefit from de-creasing or eliminating the hormone-free (placebo) interval. Extended orcontinuous cycles may be useful fortreating medical conditions such asanemia, acne, severe dysmenorrhea,endometriosis, dysfunctional or heavymenstrual bleeding, Von Willebrand dis-ease, and other bleeding diatheses andfor adolescents who prefer amenor-rhea.101 These regimens may also beuseful for conditions that can be exac-erbated cyclically, such as migraine(without aura), epilepsy, irritable bowelsyndrome, inflammatory bowel disease,and some psychiatric and behavioralsymptoms102; the most common adverseeffect of extended or continuous cyclesis unscheduled bleeding. Patients maybe reassured to know that observationaldata indicate that COC use does not in-crease the risk of infertility or breastcancer103 and that use of COCs for morethan 4 years provides significant pro-tection against endometrial and ovariancancers.104

Contraceptive Vaginal Ring

The vaginal ring (NuvaRing; Merck, White-house Station, NJ) releases a combination

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of estrogen and progestin and thus hasthe same eligibility criteria for use asCOCs. As with COCs, a same-day start(“quick start”) can also be used withthe vaginal ring. The ring is inserted inthe vagina and stays in place for 3weeks, with removal for 1 week to in-duce withdrawal bleeding, followedby insertion of a new ring. Patientsshould be instructed to insert a newring after 7 days even if bleeding hasnot ceased.

The ring has comparable efficacy, risks,and benefits as other combined hor-monal methods but provides the sim-plest regimen.32,105,106 Adverse effectsare also similar, with the additionalvaginal symptoms of discharge, dis-comfort, and problems related to thedevice (eg, expulsion).107 The ring is anexcellent method for extended usebecause, although labeled for 28 daysof use, the rings contain sufficientmedication to be used for up to 35days108 and thus can be replacedonce every calendar month. Sexuallyactive patients may be reassured toknow that most men were not both-ered by its presence, if it was notedat all.109,110

Transdermal Contraceptive Patch

The combination hormone (estrogen andprogestin) transdermal contraceptivepatch (Ortho Evra; Ortho-McNeil Phar-maceutical, Raritan, NJ) is placed onthe abdomen, upper torso, upper outerarm, or buttocks using 1 patch for eachof 3 weeks in a row, followed by 1 weekoff the patch, during which a with-drawal bleed usually occurs. Typicaluse failure rates are similar to thoseof COCs at 9%.32 The FDA has identi-fied increased estrogen exposure (1.6times higher than with a low-doseCOC111) and a potential increased riskof venous thromboembolism with thepatch112,113 (see accompanying tech-nical report for more completediscussion).

The patch has comparable efficacy,benefits, eligibility criteria for use, anddrug interactions as COCs; side effectsare similar to those of other combinedmethods, with the addition of dislodgedpatches and skin effects, such ashyperpigmentation,114,115 contact der-matitis, and other irritation.116 The riskof pregnancy with correct (“perfect”)use of the patch is slightly higher forwomen who weigh more than 198pounds than for women who weighless (0.9% vs 0.3% in first 12 months ofuse).117,118

Progestin-Only Pills

Progestin-only pills (also known as“mini-pills”) work primarily by thick-ening cervical mucus, not by inhibitingovulation. Because very stringent ad-herence is necessary, their failurerate can be significantly higher thanthose of other combined hormonaland progestin-only methods (IUDs andcontraceptive implants and injections).However, they provide an additionaloption for patients who have safetyconcerns about estrogen use (seeaccompanying technical report foradditional details).37

Male Condoms

The male condom is the most commoncontraceptive method used by ado-lescents, with up to 52% of female and75% of male adolescents reportingcondom use at last intercourse.1 Ad-vantages include male involvement inthe responsibility for contraception,easy accessibility by minors without aprescription, and low cost. Latex con-doms also reduce STI transmission,with consistent evidence for thereduction of gonorrhea, chlamydia,trichomoniasis,119–123 and hepatitis Band HIV transmission124 and emergingevidence for the reduction of herpessimplex virus,125,126 human papilloma-virus,127,128 and syphilis transmission.129

However, condom use requires com-

mitment at every sex act, tends to dropoff over time, and is influenced by in-dividual, relationship, and broader socialfactors.130–133 Although the perfect usefailure rate of condoms is 2%, the typicaluse failure rate is 18% for all users andcan be higher among adolescents.32 Thehigh typical use failure rate, coupledwith the condom’s high STI protection,has led to the recommendation for dualcontraception: condoms plus a highlyeffective hormonal or other long-actingmethod. Instructions for condom usecan be found in the accompanyingtechnical report, and additional detailsare provided in the AAP policy state-ment on condoms.133

Emergency Contraception

In the United States, EC is available asoral levonorgestrel; an oral progesteronereceptor modulator, ulipristal acetate;high-dose combined estrogen–progestinoral contraceptive pills (the Yuzpe regi-men); and placement of a copper IUD.Levonorgestrel EC is preferred to theYuzpe regimen because of the superioradverse effect profile and effectiveness,which is up to 85%.44,134 Ulipristal acetatemay have greater effectiveness than orallevonorgestrel at the end of the 5-daywindow of use, and its remaining effec-tiveness and adverse effect profile aresimilar to those of levonorgestrel.135,136 Inaddition, on the basis of recent dataabout lower efficacy of levonorgestrel EC,ulipristal may be more effective in peoplewho weigh more than 165 pounds.137,138

Placement of a copper-bearing IUD isless commonly used for EC in ado-lescents but is the most effective ECmethod, with a failure rate of lessthan 1%.139

The recommended dosage of levonor-gestrel is a single 1.5-mg dose.134,140 Itis available either as 2 pills (0.75 mgeach) or as 1 pill (Plan B One-Step;Teva Pharmaceuticals, Petah Tikva,Israel). Levonorgestrel-based EC delaysor inhibits ovulation and does not

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appear to be effective once ovulationhas occurred. If used inadvertentlyduring early pregnancy, it is not ter-atogenic, only ineffective.141 Thus, apregnancy test is not mandatory beforelevonorgestrel EC is prescribed.44

Plan B One-Step is approved by theFDA as a nonprescription product forall women of childbearing potential.142

Generic versions are approved as anonprescription product for women17 years of age and older; however,proof of age is not required to pur-chase them. Providing EC in advanceincreases the likelihood of use whenit is needed without increasing sexualor contraceptive risk-taking behav-ior.143,144 Therefore, EC should be pre-scribed or recommended in advancefor use for up to 5 days after an eventof unprotected intercourse.44 Addi-tional details on EC mechanisms anduse can be found in the AAP policystatement on emergency contracep-tion44 and the accompanying technicalreport.

Withdrawal

Withdrawal, or coitus interruptus, isa method in which the male partnerattempts to pull out his penis beforeejaculation. Because 57% of femaleadolescents report using withdrawal,1

pediatricians should ask about it.However, because of its limited ef-fectiveness (22% failure rate amongall users)32 and lack of STI pro-tection, pediatricians should encour-age adolescents to adopt more effectivemethods.

Other Methods

The female condom, periodic abstinence(fertility awareness or “the rhythmmethod”), vaginal spermicides, thecervical cap, and the diaphragm aremethods less commonly used byadolescents. Additional descriptionsare available in the accompanyingtechnical report.

SPECIAL POPULATIONS

Adolescents With Disabilities andMedically Complex Illness

An estimated 16% to 25% of adoles-cents are identified as having specialhealth care needs, including physicaldisability, developmental disability, andmedically complex illness.145 The im-proved survival of adolescents withmedically complex illnesses, such asdisabilities, chronic disease, HIV, andsolid organ transplants, has promptedgreater attention to quality-of-life is-sues. These issues, including adoles-cent interest in romantic and sexualrelationships, are typically addressedby a pediatrician. Sexuality and sexualhealth care needs in this populationare often overlooked, yet data demon-strate that, compared with healthyadolescents, adolescents with chronicillness have similar levels of sexualbehaviors and sexual health outcomes(eg, STIs).146,147 In addition to pregnancyprevention, these adolescents may needmenstrual suppression for heavy men-strual bleeding, bleeding disorders, orchemotherapy. Other patients may beusing teratogenic medications and needcontraception for that reason. Issuesthat arise include safety concerns withestrogen use, medication interactions,and complications from the underlyingdisease. The CDC has recently addressedthe contraceptive needs of young womenwith medical conditions by publishingthe “US Medical Eligibility Criteria forContraceptive Use.”37 Available online,this document summarizes the literatureon safety and efficacy of different con-traceptive methods by medical condition.Additional details on specific populations(eg, those with disabilities) are sum-marized in the accompanying technicalreport.

Adolescents With Obesity

The sexual health needs and sexualbehaviors of adolescents with obesityare substantially similar to those of

their normal-weight peers.148,149 Inaddressing contraception, it is impor-tant to note that obesity and relatedendocrine effects can influence theefficacy and adverse effects profiles ofcontraceptives. For example, a smallnumber of excess pregnancies werefound among transdermal contracep-tive patch users weighing more than90 kg (198 lb).117,118 The World HealthOrganization and CDC report that dataare limited and inconsistent aboutwhether COC effectiveness varies bybody weight or BMI.37,150–152 A commonconcern of both adolescents and pro-viders is additional weight gain amongadolescents with obesity after theystart contraception. Data suggest thatwomen with obesity are no more likelyto gain weight with COCs, the vaginalring, IUDs, or implants than normal-weight peers. In contrast, adolescentswith obesity who used DMPA weremore likely than nonusers with obesity,COC users with obesity, and normal-weight DMPA users to gain weight.80

Increasing numbers of adolescents arehaving bariatric surgery proceduresperformed, and these patients needhighly effective contraception. Post-surgery data reveal an improvement infertility coupled with the potential fordecreased contraceptive effectivenessthrough malabsorption, vomiting, anddiarrhea.86 Professional consensusstatements recommend delaying preg-nancy for at least 12 months after theprocedure.153 All contraceptive meth-ods are safe for women with a historyof bariatric surgery, with the exceptionof oral contraceptives for women whohave undergone malabsorptive proce-dures.37 There is increasing experienceand success with the levonorgestrelIUD placed at the time of surgery.154

ADHERENCE AND FOLLOW-UP

Frequent follow-up is important tomaximize adherence for all methodsof contraception and to promote and

e1250 FROM THE AMERICAN ACADEMY OF PEDIATRICS

reinforce healthy decision-making. Ad-olescents count on trusted health pro-fessionals, such as pediatricians, forsupport and problem solving aroundcontinuation and adherence. Regularlyscheduled contraceptive follow-up vis-its should address use, adherence,adverse effects, and complications.Pediatricians can use motivational inter-viewing approaches to increase effectiveand consistent contraceptive use, in-cluding engaging parental support forcontraceptive adherence, when possi-ble. Follow-up visits should additionallyinclude reassessment of relationships,sexual behaviors, contraceptive needs,STI surveillance and prevention, andother sexual health prevention mea-sures, such as human papillomavirusimmunization.

RECOMMENDATIONS

1. Pediatricians should counsel aboutand ensure access to a broadrange of contraceptive servicesfor their adolescent patients. Thisincludes educating patients aboutall contraceptive methods that aresafe and appropriate for them anddescribing the most effective meth-ods first.

2. Pediatricians should be able toeducate adolescent patients aboutLARC methods, including the pro-gestin implant and IUDs. Given theefficacy, safety, and ease of use,LARC methods should be consid-ered first-line contraceptive choicesfor adolescents. Some pediatriciansmay choose to acquire the skills toprovide these methods to adoles-cents. Those who do not shouldidentify health care providers intheir communities to whom patientscan be referred.

3. Despite increased attention to ad-verse effects, DMPA and the con-traceptive patch are highly effectivemethods of contraception that aremuch safer than pregnancy. Pedia-

tricians should continue to makethem available to their patients.

4. Pediatricians should allow the ad-olescent to consent to contraceptivecare and to control the disclosureof this information within the limitsof state and federal laws. There area number of supports for protectingminor consent and confidentiality,including state law, federal statutes,and federal case law. Pediatricianswill need to be familiar with nationalbest practice recommendations forconfidential care and with the rele-vant minor consent laws in theirstates.

5. Pediatricians should be awarethat it is appropriate to prescribecontraceptives or refer for IUDplacement without first conductinga pelvic examination. Screeningsfor STIs, especially chlamydia, canbe performed without a pelvic ex-amination and should not bedelayed.

6. Pediatricians should encouragethe consistent and correct use ofcondoms with every act of sexualintercourse.

7. Pediatricians should have a work-ing knowledge of the differentcombined hormonal methods andregimens, because these provideexcellent cycle control both forcontraception and medical man-agement of common conditions,such as acne, dysmenorrhea, andheavy menstrual bleeding.

8. Pediatricians should rememberthat adolescents with chronic ill-ness and disabilities have similarsexual health and contraceptiveneeds to healthy adolescents whilerecognizing that medical illness maycomplicate contraceptive choices.

9. Pediatricians should regularly updatetheir adolescent patients’ sexual his-tories and provide a confidential andnonjudgmental setting in which to

address needs for contraception,STI screening, and sexual risk re-duction counseling for patientswho choose not to be abstinent.

10. Pediatricians should allow suffi-cient time with their adolescentpatients to address contraceptiveneeds using a developmentallyappropriate, patient-centered ap-proach, such as motivational inter-viewing. If necessary, arrangementsshould be made for a separate visitfor contraceptive follow-up to in-crease adherence and monitor foradverse effects and complications.

11. Pediatricians can complement theskills and resources of the pedi-atric office by being aware ofstate or federally subsidized in-surance programs and clinicsthat provide confidential and freeor low-cost reproductive healthcare services and supplies, in-cluding contraception.

LEAD AUTHORSMary A. Ott, MD, MA, FAAPGina S. Sucato, MD, MPH, FAAP

COMMITTEE ON ADOLESCENCE,2013–2014Paula K. Braverman, MD, ChairpersonWilliam P. Adelman, MD, FAAPElizabeth M. Alderman, MD, FAAP, FSHAMCora C. Breuner, MD, MPH, FAAPDavid A. Levine, MD, FAAPArik V. Marcell, MD, FAAPRebecca F. O’Brien, MD, FAAP

PAST COMMITTEE MEMBERPamela J. Murray, MD, MPH, FAAP

LIAISONSLoretta E. Gavin, PhD, MPH – Centers for DiseaseControl and PreventionMargo Lane, MD, FRCPC – Canadian PediatricSocietyRachel J. Miller, MD – American College ofObstetricians and GynecologistsBenjamin Shain, MD, PhD – American Academyof Child and Adolescent Psychiatry

STAFFKaren S. SmithJames D. Baumberger, MPP

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FROM THE AMERICAN ACADEMY OF PEDIATRICS

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101. Sucato GS, Gold MA. Extended cycling oforal contraceptive pills for adolescents.J Pediatr Adolesc Gynecol. 2002;15(5):325–327

102. Sucato GS, Gerschultz KL. Extended cyclehormonal contraception in adolescents.Curr Opin Obstet Gynecol. 2005;17(5):461–465

103. ACOG Committee on Practice Bulletins–Gynecology. ACOG practice bulletin no. 73:Use of hormonal contraception in womenwith coexisting medical conditions. ObstetGynecol. 2006;107(6):1453–1472

104. Vessey M, Painter R. Oral contraceptiveuse and cancer. Findings in a large cohortstudy, 1968–2004. Br J Cancer. 2006;95(3):385–389

105. Roumen FJ, Apter D, Mulders TM, DiebenTO. Efficacy, tolerability and acceptabilityof a novel contraceptive vaginal ring re-leasing etonogestrel and ethinyl oestr-adiol. Hum Reprod. 2001;16(3):469–475

106. Dieben TO, Roumen FJ, Apter D. Efficacy,cycle control, and user acceptability ofa novel combined contraceptive vaginalring. Obstet Gynecol. 2002;100(3):585–593

107. Edwardson J, Jamshidi R. The contracep-tive vaginal ring. Semin Reprod Med. 2010;28(2):133–139

108. Timmer CJ, Mulders TM. Pharmacokinet-ics of etonogestrel and ethinylestradiolreleased from a combined contraceptivevaginal ring. Clin Pharmacokinet. 2000;39(3):233–242

109. Guida M, Di Spiezio Sardo A, Bramante S,et al. Effects of two types of hormonalcontraception—oral versus intravaginal—onthe sexual life of women and their partners.Hum Reprod. 2005;20(4):1100–1106

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110. Veres S, Miller L, Burington B. A compar-ison between the vaginal ring and oralcontraceptives. Obstet Gynecol. 2004;104(3):555–563

111. van den Heuvel MW, van Bragt AJ, AlnabawyAK, Kaptein MC. Comparison of ethinylestradiolpharmacokinetics in three hormonal contra-ceptive formulations: the vaginal ring, thetransdermal patch and an oral contraceptive.Contraception. 2005;72(3):168–174

112. Cole JA, Norman H, Doherty M, Walker AM.Venous thromboembolism, myocardial in-farction, and stroke among transdermalcontraceptive system users. Obstet Gynecol.2007;109(2 pt 1):339–346

113. Dore DD, Norman H, Loughlin J, Seeger JD.Extended case–control study results onthromboembolic outcomes among trans-dermal contraceptive users. Contracep-tion. 2010;81(5):408–413

114. Harel Z, Riggs S, Vaz R, Flanagan P, Dunn K,Harel D. Adolescents’ experience with thecombined estrogen and progestin trans-dermal contraceptive method Ortho Evra.J Pediatr Adolesc Gynecol. 2005;18(2):85–90

115. Rubinstein ML, Halpern-Felsher BL, IrwinCE Jr. An evaluation of the use of thetransdermal contraceptive patch in ado-lescents. J Adolesc Health. 2004;34(5):395–401

116. Stricker T, Sennhauser FH. Allergic contactdermatitis due to transdermal contra-ception patch. J Pediatr. 2006;148(6):845

117. Audet MC, Moreau M, Koltun WD, et al;ORTHO EVRA/EVRA 004 Study Group. Eval-uation of contraceptive efficacy and cyclecontrol of a transdermal contraceptivepatch vs an oral contraceptive: a random-ized controlled trial. JAMA. 2001;285(18):2347–2354

118. Zieman M, Guillebaud J, Weisberg E,Shangold GA, Fisher AC, Creasy GW. Con-traceptive efficacy and cycle control withthe Ortho Evra/Evra transdermal system:the analysis of pooled data. Fertil Steril.2002;77(2 Suppl 2):S13–S18

119. Holmes KK, Levine R, Weaver M. Effective-ness of condoms in preventing sexuallytransmitted infections. Bull World HealthOrgan. 2004;82(6):454–461

120. Gallo MF, Steiner MJ, Warner L, et al. Self-reported condom use is associated withreduced risk of chlamydia, gonorrhea,and trichomoniasis. Sex Transm Dis. 2007;34(10):829–833

121. Warner L, Macaluso M, Newman D, et al.Condom effectiveness for prevention of Ctrachomatis infection. Sex Transm Infect.2006;82(3):265

122. Paz-Bailey G, Koumans EH, Sternberg M,et al. The effect of correct and consistent

condom use on chlamydial and gonococ-cal infection among urban adolescents.Arch Pediatr Adolesc Med. 2005;159(6):536–542

123. Niccolai LM, Rowhani-Rahbar A, Jenkins H,Green S, Dunne DW. Condom effectivenessfor prevention of Chlamydia trachomatisinfection. Sex Transm Infect. 2005;81(4):323–325

124. Weller S, Davis K. Condom effectiveness inreducing heterosexual HIV transmission.Cochrane Database Syst Rev. 2002; (1):CD003255

125. Martin ET, Krantz E, Gottlieb SL, et al. Apooled analysis of the effect of condomsin preventing HSV-2 acquisition. Arch In-tern Med. 2009;169(13):1233–1240

126. Stanaway JD, Wald A, Martin ET, GottliebSL, Magaret AS. Case-crossover analysis ofcondom use and herpes simplex virustype 2 acquisition. Sex Transm Dis. 2012;39(5):388–393

127. Winer RL, Hughes JP, Feng Q, et al.Condom use and the risk of genital hu-man papillomavirus infection in youngwomen. N Engl J Med. 2006;354(25):2645–2654

128. Shew ML, Fortenberry JD, Tu W, et al. As-sociation of condom use, sexual behav-iors, and sexually transmitted infectionswith the duration of genital human pap-illomavirus infection among adolescentwomen. Arch Pediatr Adolesc Med. 2006;160(2):151–156

129. Koss CA, Dunne EF, Warner L. A systematicreview of epidemiologic studies assessingcondom use and risk of syphilis. SexTransm Dis. 2009;36(7):401–405

130. Matson PA, Adler NE, Millstein SG,Tschann JM, Ellen JM. Developmentalchanges in condom use among urbanadolescent females: influence of part-ner context. J Adolesc Health. 2011;48(4):386–390

131. Bearinger LH, Sieving RE, Duke NN,McMorris BJ, Stoddard S, Pettingell SL.Adolescent condom use consistencyover time: global versus partner-specific measures. Nurs Res. 2011;60(3suppl):S68–S78

132. Kenyon DB, Sieving RE, Jerstad SJ, PettingellSL, Skay CL. Individual, interpersonal, andrelationship factors predicting hormonaland condom use consistency among ado-lescent girls. J Pediatr Health Care. 2010;24(4):241–249

133. American Academy of Pediatrics, Com-mittee on Adolescence. Policy statement:condom use by adolescents. Pediatrics.2013;132(5):973–981

134. Cheng L, Gülmezoglu AM, Piaggio G,Ezcurra E, Van Look PF. Interventions foremergency contraception. Cochrane Da-tabase Syst Rev. 2008; (2):CD001324

135. Fine P, Mathé H, Ginde S, Cullins V, MorfesisJ, Gainer E. Ulipristal acetate taken 48–120hours after intercourse for emergencycontraception. Obstet Gynecol. 2010;115(2 Pt1):257–263

136. Glasier AF, Cameron ST, Fine PM, et al.Ulipristal acetate versus levonorgestrelfor emergency contraception: a randomisednon-inferiority trial and meta-analysis. Lan-cet. 2010;375(9714):555–562

137. Rockoff JD. FDA reviewing efficacy ofPlan B contraception in women over 165pounds. The Wall Street Journal. Novem-ber 25, 2013. Available at: http://online.wsj.com/news/articles/SB1000142405270-2304011304579220533719517944. AccessedJanuary 13, 2014

138. Glasier A, Cameron ST, Blithe D, et al. Canwe identify women at risk of pregnancydespite using emergency contraception?Data from randomized trials of ulipristalacetate and levonorgestrel. Contracep-tion. 2011;84(4):363–367

139. Cleland K, Zhu H, Goldstuck N, Cheng L,Trussell J. The efficacy of intrauterinedevices for emergency contraception:a systematic review of 35 years of ex-perience. Hum Reprod. 2012;27(7):1994–2000

140. von Hertzen H, Piaggio G, Ding J, et al;WHO Research Group on Post-ovulatoryMethods of Fertility Regulation. Low dosemifepristone and two regimens of levo-norgestrel for emergency contraception:a WHO multicentre randomised trial. Lan-cet. 2002;360(9348):1803–1810

141. Gallo MF, Grimes DA, Schulz KF, HelmerhorstFM. Combination estrogen–progestin contra-ceptives and body weight: systematic reviewof randomized controlled trials. Obstet Gynecol.2004;103(2):359–373

142. US Food and Drug Administration. FDAapproves Plan B One-Step emergencycontraceptive for use without a pre-scription for all women of child-bearingpotential. June 20, 2013. Available at:www.fda.gov/NewsEvents/Newsroom/Press-Announcements/ucm358082.htm. AccessedJanuary 13, 2014

143. Ellertson C, Ambardekar S, Hedley A,Coyaji K, Trussell J, Blanchard K. Emer-gency contraception: randomized com-parison of advance provision andinformation only. Obstet Gynecol. 2001;98(4):570–575

144. Meyer JL, Gold MA, Haggerty CL. Advanceprovision of emergency contraception

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among adolescent and young adultwomen: a systematic review of literature.J Pediatr Adolesc Gynecol. 2011;24(1):2–9

145. Bethell CD, Read D, Blumberg SJ, NewacheckPW. What is the prevalence of children withspecial health care needs? Toward an un-derstanding of variations in findings andmethods across three national surveys.Matern Child Health J. 2008;12(1):1–14

146. McRee AL, Haydon AA, Halpern CT. Re-productive health of young adults withphysical disabilities in the U.S. Prev Med.2010;51(6):502–504

147. Surís JC, Resnick MD, Cassuto N, Blum RW.Sexual behavior of adolescents with chronicdisease and disability. J Adolesc Health.1996;19(2):124–131

148. Akers AY, Lynch CP, Gold MA, et al. Exploringthe relationship among weight, race, andsexual behaviors among girls. Pediatrics.2009;124(5). Available at: www.pediatrics.org/cgi/content/full/124/5/e913

149. Mond J, van den Berg P, Boutelle K, HannanP, Neumark-Sztainer D. Obesity, body dissat-isfaction, and emotional well-being in earlyand late adolescence: findings from theproject EAT study. J Adolesc Health. 2011;48(4):373–378

150. Xu H, Wade JA, Peipert JF, Zhao Q, MaddenT, Secura GM. Contraceptive failure ratesof etonogestrel subdermal implants in over-weight and obese women. Obstet Gynecol.2012;120(1):21–26

151. Hormonal contraceptives for contraceptionin overweight or obese women. ObstetGynecol. 2010;116(5):1206–1207

152. Brunner Huber LR, Toth JL. Obesity and oralcontraceptive failure: findings from the2002 National Survey of Family Growth. AmJ Epidemiol. 2007;166(11):1306–1311

153. American College of Obstetricians andGynecologists. ACOG practice bulletin no.105: bariatric surgery and pregnancy. ObstetGynecol. 2009;113(6):1306–1311

154. Hillman JB, Miller RJ, Inge TH. Menstrualconcerns and intrauterine contraceptionamong adolescent bariatric surgerypatients. J Womens Health (Larchmt).2011;20(4):533–538

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POLICY STATEMENT

Providing Care for Immigrant, Migrant, and BorderChildren

abstractThis policy statement, which recognizes the large changes in immi-grant status since publication of the 2005 statement “Providing Carefor Immigrant, Homeless, and Migrant Children,” focuses on strate-gies to support the health of immigrant children, infants, adolescents,and young adults. Homeless children will be addressed in a forthcom-ing separate statement (“Providing Care for Children and AdolescentsFacing Homelessness and Housing Insecurity”). While recognizing thediversity across and within immigrant, migrant, and border popula-tions, this statement provides a basic framework for serving andadvocating for all immigrant children, with a particular focus onlow-income and vulnerable populations. Recommendations includeactions needed within and outside the health care system, includingexpansion of access to high-quality medical homes with culturally andlinguistically effective care as well as education and literacy pro-grams. The statement recognizes the unique and special role thatpediatricians can play in the lives of immigrant children and families.Recommendations for policies that support immigrant child healthare included. Pediatrics 2013;131:e2028–e2034

INTRODUCTION

Many children in immigrant communities face multiple barriers toaccessing comprehensive, affordable, and culturally and linguisticallyeffective health care services. Some of these barriers include poverty,fear and stigma, high mobility, limited English proficiency, little in-formation or misunderstandings about how the US health care systemworks, and lack of insurance and/or access to care. Many children ofimmigrant families belong to racial and ethnic minority groups thatface health status disparities resulting from complex determinantsthat are exacerbated by children’s living circumstances. Inadequateavailability of basic necessities, such as housing, and lack of in-formation regarding previous medical care are among the persistentchallenges faced by these vulnerable families. For some, the fear ofviolence or harassment because of their immigrant status com-pounds their already fragile living conditions. For many within thispopulation, care can be episodic, fragmented, and oriented to care ofacute conditions.1 Although many children in these circumstancesface similar challenges, there are some differences of experiencesamong migrant and border immigrant subgroups (see Fig 1).

COUNCIL ON COMMUNITY PEDIATRICS

KEY WORDSimmigrant, migrant, border, underserved communities

ABBREVIATIONSCHIP—Children’s Health Insurance Program

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authorshave filed conflict of interest statements with the AmericanAcademy of Pediatrics. Any conflicts have been resolved througha process approved by the Board of Directors. The AmericanAcademy of Pediatrics has neither solicited nor accepted anycommercial involvement in the development of the content ofthis publication.

The recommendations in this statement do not indicate anexclusive course of treatment or serve as a standard of medicalcare. Variations, taking into account individual circumstances,may be appropriate.

All policy statements from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

www.pediatrics.org/cgi/doi/10.1542/peds.2013-1099

doi:10.1542/peds.2013-1099

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2013 by the American Academy of Pediatrics

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Organizational Principles to Guide and Define the ChildHealth Care System and/or Improve the Health of all Children

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DEFINITIONS

“Immigrant children” are defined aschildren who are foreign-born orchildren born in the United States wholive with at least 1 parent who isforeign-born.2

Many immigrant children are in mi-grant families that move across thecountry seeking seasonal or tempo-rary employment in a variety of in-dustries. “Migrant children” may workin the industries in which their familymembers are employed and movefrequently because of changes in theirparents’ employment. Migrant familiesare often located in areas that havemany agricultural workers and/orwhere rapid growth is occurring.

“Border children” are those who livewithin 100 km of the US-Mexico bor-der.3 Immigrant children have a sig-nificant presence in the border statesof Arizona, California, New Mexico, andTexas. Many border children are ofMexican origin, and a significant num-ber are US citizens whose ancestorshave been US citizens for generations.For the purposes of this discussion,

only children living north of the Mex-ican border are described, althoughmany children south of the bordershare similar characteristics. Chil-dren living along the Canadian borderare not discussed in this statement,because there is far less immigrationacross that border and discrete im-migrant communities there have beenrare.

DEMOGRAPHICS

Immigrant children represent thefastest growing segment of the USpopulation. One in every 4 children inthe United States, approximately 18.4million children, live in an immigrantfamily. Eighty-nine percent of thesechildren are born in the United Statesand are US citizens.4 Immigrant chil-dren accounted for most of the USchild population growth over the pastdecade. Although 64% of all childrenof immigrants live in 6 states (California,Texas, New York, Florida, Illinois, andNew Jersey), immigrant children aredispersed throughout the country. Since1990, the largest growth in percentage

of immigrant children has occurred inNorth Carolina, Nevada, Georgia, andArkansas.5 Families immigrate for a va-riety of reasons that may include seek-ing opportunity, fleeing war/chaos, orescaping persecution.

Pediatricians may be surprised by thehigh degree of diversity of the immi-grant population and by the variety ofimmigrant communities within theirmidst, such as Haitians in Florida andeastern Virginia or Somali families inSeattle and Minneapolis. Hmong fam-ilies are present in the Central Valley ofCalifornia.6 In response to the growthof these immigrant communities, somehealth care and social/community ser-vice providers have begun providingculturally appropriate care and services.

Approximately 43% of immigrant chil-dren have parents of Mexican origin,and 20% are of Central American de-scent. An estimated 22% of immigrantchildren have parents of Asian orMiddle Eastern origin. Fifteen percentof children have parents with originsin Africa, Central and Eastern Europe,Western Europe, Canada, and Aus-tralia.7 Given this rapid demographicgrowth, most pediatricians will pro-vide care for immigrant children intheir practices.

COMMON CHALLENGES FORIMMIGRANT, MIGRANT, ANDBORDER CHILDREN

All 3 groups of children face a varietyof challenges to their health and well-being, including poverty, lack of healthinsurance, low educational attainment,substandard housing, and languagebarriers.

Poverty is a strong determinant ofchild well-being and is very commonamong immigrant children. Poverty isclosely linked to negative physical,developmental, and mental health–related outcomes.8 A family’s socio-economic status has a direct effect onits ability to access high-quality health

FIGURE 1Representation of the populations of immigrant, border, and migrant children: separate and over-lapping groups.

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care services and to achieve goodhealth, social, and emotional out-comes. In 2010, 30% of children inimmigrant families lived below thefederal poverty level, compared with19% of children with US-born pa-rents.4 This is despite the fact thatimmigrant children are more likely tolive in 2-parent families and haveparents who work and work morehours compared with parents of US-born children.9 Immigrant childrentend to live in larger families, with19% having 4 or more siblings, com-pared with 14% of US-born families.10

Housing is often substandard and/orovercrowded for these families.

Lack of health care coverage is morecommon among children in each ofthese groups than for nonimmigrantchildren. Children of immigrants arenearly twice as likely to be uninsured(15%) as are children of nonimmigrantfamilies (8%).4 Many of the immigrantchildren who are uninsured are eligi-ble for Medicaid or the Children’sHealth Insurance Program (CHIP) butare not enrolled. Many immigrant pa-rents fear that accessing services fortheir eligible children will lead themto be considered a “public charge” (aperson dependent on the governmentfor the expenses of living11) and worryabout how that may negatively affecttheir immigration status and pros-pects. They may also fear that agenciesoffering assistance will share infor-mation with immigration enforcementagencies. Other families may not beaware of their children’s eligibility forcoverage. These same reasons mayaffect parents’ ability and willingnessto access other programs and benefitsthat their children may be eligible for,such as the Special Supplemental Nu-trition Program for Women, Infants,and Children; Supplemental NutritionAssistance Program; the Temporary As-sistance for Needy Families program;and Supplemental Security Income.

Current federal law allows states toapply waiting periods for up to 5years for legal permanent residentsto become eligible for Medicaid cover-age. Medicaid also excludes undocu-mented children from all but emergencyhealth care. Although states may chooseto cover children sooner, waiting peri-ods can exacerbate the lack of healthinsurance coverage for immigrant chil-dren. The Affordable Care Act of 2010(Pub L No. 111-148) also restricts theaccess to health insurance exchangesof children and adults who are un-documented immigrants.12

Language and communication barriersmay impede medical care for manychildren in each of these 3 groups.Although many immigrant childrenspeak English, their parents may not,creating a barrier that can preventfamilies from accessing health servicesand/or causing inadequate communi-cation with health care providers.Without access to qualified medicalinterpreters in health care settings,language barriers can place English-speaking children in the difficult po-sition of interpreting between healthcare providers and their family mem-bers. Use of children and other familymembers as untrained interpretersshould be avoided. These challengescan result in major barriers to ac-cessing health care and decreasedsatisfaction with services received.Providing care to families with limitedEnglish proficiency without appropri-ate medical interpretation services canultimately lead to a higher incidence ofmedical errors when delivering care.13

Educational levels and health literacyare often lower among parents ofimmigrant, border, and migrant fami-lies than among native-born US fami-lies. Thirty-one percent of immigrantchildren have a mother without a highschool education; the proportion offathers without a high school educa-tion is similar.4 It is important to note

that the level of maternal education isan important determinant of childhealth. Lower education levels areassociated with lower health literacy.Low health literacy creates a barrierfor patients in understanding medicalinformation and is associated withpoor health outcomes.

Health Status and HealthDisparities

Although immigrant children may bevulnerable to many risk factors forpoorer health outcomes, some groupsof immigrant children enjoy a healthierinfancy than expected. For example,Latino families have a relatively lowincidence of low birth weight, pretermbirth, and infant mortality comparedwith children of US-born parents.4

This phenomenon has been called the“healthy immigrant phenomenon.”9

Immigrant mothers are more likely tobreastfeed their infants than mothersborn in the United States.14 Immigrantchildren also seem to benefit fromsome additional protective factors,such as growing up in 2-parent orextended families,9 as well as closeidentification with the cultural andspiritual practices of their family andcommunity. In addition, as they growup, immigrant children may also dis-play relatively better adjustment andbehavior in school compared withnonimmigrant peers. This phenome-non has been shown to fade with in-creased length of stay in the UnitedStates and is, therefore, an infrequentprotective factor for health outcomes.

On the other hand, the health of im-migrant children as a group is, in somerespects, worse than US-born children.For example, they are less likely to beperceived by their parents to be inexcellent/good health and are lesslikely to have a usual source of medicalcare and to obtain specialty care whenneeded.15 They also have less accessto dental care, despite the fact that

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they have a higher prevalence of den-tal caries.16 The Affordable Care Actexcluded undocumented immigrantsfrom health care coverage madeavailable through the Act, leaving thatgroup of adults and children as thelargest group who still will not havehealth insurance after the changes of2014.12

Immigrant children who are foreign-born may not have been screened atbirth for congenital syphilis, hemo-globinopathies, hearing deficits, andinborn errors of metabolism. In com-parison with US-born children, theyalso have lower immunization rates,especially for vaccines that are notroutinely administered in their coun-tries of origin. Some children may lackimmunization records. Foreign-bornimmigrant children have a higher in-cidence or prevalence of some infec-tious diseases, such as tuberculosis,hepatitis A, amebiasis, and parasito-sis.17 Immigrant children with asthmaare less likely to be prescribed the re-commended preventive medications.18

Immigrant families may be uniquelyvulnerable to mental health problemsand experience high levels of stress,depression, grief, and traumatic eventscompared with nonimmigrant fami-lies.19 Additionally, many experiencethe stress of family separation, inwhich some of the siblings or, in somecases, 1 or both of the parents do notreside in this country with them.

Development, Early Education, andSchool Success

Many immigrant, migrant, and borderchildren also experience educationaldisparities compared with US-bornchildren. As noted, immigrant childrenmay enjoy a healthy start as infants butmay experience developmental stag-nation as toddlers compared with non-immigrant children.20

In general, children who grow up inbilingual homes should attain major

language developmental milestones atthe normally expected times. At thesame time, children raised in homeswith impoverished language have agreater chance of being delayed inlanguage acquisition, whether theirfamilies are monolingual or bilingual.When language delays are suspectedin children growing up in limitedEnglish proficiency households, theypresent complex evaluation and inter-vention issues. When in doubt abouta suspected language delay in a bi-lingual child, timely referral to aknowledgeable, bilingual speech andlanguage pathologist is ideal.

Many immigrant children have lessaccess to quality early educationprograms and are less likely to beenrolled in preschool programs, suchas Head Start.4 Once enrolled inschool, cultural and linguistic barriersbetween parents and schools can leadto decreased family interaction andinvolvement. As they advance in theirschooling, children in immigrantfamilies are less likely to graduatefrom high school than are their non-immigrant peers.4

Fear and Discrimination

Immigrant children and families mayface discrimination and be fearful ofattitudes and behaviors of the peoplethey interact with outside their com-munities, including health care pro-viders, which can reduce access tohealth care and lead to negative childhealth outcomes. Families may faceanti-immigrant sentiment. Fear anddiscrimination can exacerbate a feel-ing of isolation and contribute tomental health problems, such as childand family depression, leaving thesepopulations vulnerable.

Family Separation

Immigrant children may have 1 ormore undocumented family members.An undocumented immigrant lacks the

proper records and identification tolive in the United States.21 Immigrationenforcement and related policies canlead to the sudden removal of an un-documented parent or other keyfamily member without notice orpreparation. Children whose parentsare taken into custody and/or depor-ted have been shown to experiencemental and emotional health prob-lems, including sleeping and eatingdisturbances, anxiety, depression, poorschool performance, and other typesof distress. Forced separations be-cause of immigration enforcement canalso result in the loss of family incomeand have been shown to result infamily housing and food instability.22

This can negatively affect a child’ssafety, health, and development.

FACTORS SPECIFIC TO MIGRANTCHILDREN

A large number of migrant childrenare also immigrants. For that reason,virtually all of the points made earlierabout immigrant children may alsoapply to those who are migrants. Be-cause of their migration patterns,migrant children are even more likelyto lack medical coverage and a medi-cal home than other immigrant chil-dren. They are also more likely to besocially, culturally, and linguisticallyisolated because of their mobile life-style.

Many migrant children face a panoplyof health problems related to theirliving and working conditions, includ-ing workplace injuries, substandardhousing, and unreliable transporta-tion.23 These factors can contribute tohigher rates of respiratory tract andear infections, bacterial and viral gas-troenteritis, tuberculosis, nutritionaldeficiencies, intestinal parasites, skininfections, dental problems, lead andpesticide exposure, and undiagnosedcongenital anomalies.24 Additionally,at times, migrant adolescents travel

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on their own from 1 job site to an-other, putting them at increased riskof many health-related problems.

FACTORS SPECIFIC TO BORDERCHILDREN

Immigrant children living at the US-Mexico border share almost all ofthe characteristics of other immigrantchildren but may experience additionalchallenges. Children who have crossedthe border to enter the United Statesmay have experienced trauma in theform of threat of death, abuse, andexploitation that leave serious psy-chological scars. Once in the UnitedStates, these children may experiencean enhanced fear of a family member’sdeportation, imprisonment, or abusebecause of documentation status.Children and families who have re-cently crossed the border can alsoexperience difficulty adapting to thenew cultural environment of theUnited States and experience stressfrom the absence of an extendedfamily (including a parent or head ofhousehold) that is located in anothercountry. Border children may be evenmore stigmatized or mistreated by thenonimmigrant populations livingnearby, as their families are falselypresumed to take advantage of scarceresources and not pay taxes.

Many border communities are poorand lacking in resources, includingmedical care. In general, border com-munities lack sufficient numbers ofprimary care pediatricians, and thosepresent may lack appropriate culturaland linguistic capacity to serve mi-nority border children. In addition,primary care providers bear an es-pecially high proportion of Medicaid,CHIP, and self-pay patients, with fewprivately insured patients to whomcosts may be shifted. As a conse-quence of these deficiencies and be-cause of high costs of medical care inthe United States, families living close

to the border may use medical careand pharmaceutical resources southof the border.

RECOMMENDATIONS

Immigrant children represent a con-siderable part of the economic andsocial future of the nation. It is in thenational interest that we work to en-sure that all children within the UnitedStates, including immigrant, border,and migrant children, grow up physi-cally and developmentally healthy. Thefuture prosperity and well-being of theUnited States depends on the healthand vitality of all of its children,without exception. The following rec-ommendations address how pedia-tricians can help support immigrantchild health in practice.

1. Pediatricians and the AmericanAcademy of Pediatrics should ad-vocate for health insurance cover-age for every child and everyindividual living in the UnitedStates, as lack of coverage forany family member affects thehealth of the entire family.25 Thisadvocacy should focus on expand-ing access to quality health carewithin a medical home. Barriersto enrollment must be addressed,including the removal of any wait-ing periods for documented immi-grant children to enroll intocoverage. Efforts must also ad-dress barriers to enrollment forchildren who are potentially eligi-ble for Medicaid and CHIP but notenrolled. Simplified enrollmentfor both programs and federalor state funding for those whoare not currently eligible for Med-icaid or CHIP is also essential.

2. The provision of comprehensive,coordinated, culturally and lin-guistically effective care, and con-tinuous health services providedin a quality medical home shouldbe integral to all efforts on behalf

of immigrant children.26 This isespecially critical for children withchronic health care needs andemotional or behavioral healthproblems. Private and public in-surance payers should pay forqualified medical interpretationservices.

3. Pediatricians caring for immigrantchildren should evaluate immu-nization adequacy and shouldconduct careful developmentalsurveillance and screening at reg-ular intervals as recommended bythe American Academy of Pediat-rics.27 Appropriate referral forearly intervention services or psy-choeducational evaluation shouldbe initiated as soon as a concernis identified.

4. Pediatricians should recognizethe barriers to health that arefaced by immigrant children andtake these barriers into accountwhile providing care. They shouldinquire about beliefs and practi-ces related to health, illness, anddisability, as well as traditionalhealing practices and medicationuse while obtaining a patient’smedical history. Knowledge, atti-tude, and skill development in cul-turally and linguistically effectivepractices and cross-cultural com-munication should be part of ev-ery pediatrician’s professionalagenda.

5. Pediatricians should be knowledge-able about the unique emotional,behavioral, mental, and physicalhealth advantages and problemsthat may be faced by immigrantchildren, including those relatedto family separation. Appropriatescreening to identify family, envi-ronmental, and social circumstan-ces, as well as biological factors,should be incorporated into rou-tine pediatric assessments, suchas in Bright Futures history forms.

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6. Pediatricians should have accessto information regarding federal,state, and community programsthat can serve as resources toat-risk children and families. Cul-turally relevant programs thataddress social and economic chal-lenges, such as food and housingsecurity, English literacy, and legalservices, are particularly impor-tant. Medical-legal partnershipsshould be supported to help immi-grant families with these issues.

7. Pediatricians should play a keyrole in helping immigrant parentsassess and review the educa-tional progress of the child andencouraging parents to becomeinvolved in and interact withteachers and the school commu-nity. If a child exhibits difficulty oracademic underachievement, pe-diatricians are in a unique posi-tion to advocate for the child andencourage and help parents toobtain appropriate evaluationand intervention from the schoolsystem.

8. Pediatricians should routinelyuse available screening and diag-nostic protocols for evaluatingforeign-born children for infec-tious diseases and other medicalconditions when providing carefor newly arrived immigrant chil-dren.28 Additional screenings, in-cluding lead, vision, and hearingscreenings, should be consideredwhether required for school entryor not.

9. Pediatricians should advocate foran array of culturally effective earlyintervention services, including theestablishment of evidence-basedearly literacy promotion programs,such as Reach Out and Read, inimmigrant, border, and migrantcommunities. Because reading issuch an important skill, these pro-grams are important tools for im-proving the school readiness of allchildren, just as fostering healthliteracy in parents is important tothe well-being of their children.

10. Pediatricians should use their posi-tions of respect in communities topromote the value of diversity andinclusion and to advocate for chil-dren and families of all backgrounds.

Given the challenging circumstancesmany immigrant children face becauseof their family’s immigration status, thefollowing recommendations addresshow immigration policies can supportchild health and well-being.

11. The health, well-being, and safety ofchildren should be prioritized in allimmigration proceedings. Wheneverpossible, the separation of a childfrom his or her family and homeenvironment should be prevented,and family reunions should be ex-pedited.

12. In no circumstances should a childhave to represent himself or her-self in an immigration proceeding.

13. Health care facilities should be safesettings for immigrant children

and families to access healthcare. Medical records and healthcare facilities should not be usedin any immigration enforcementaction.

LEAD AUTHORSLance A. Chilton, MDGilbert A. Handal, MDGonzalo J. Paz-Soldan, MD

COUNCIL ON COMMUNITY PEDIATRICSEXECUTIVE COMMITTEE, 2011–2012Deise C. Granado-Villar, MD, MPH, ChairpersonBenjamin A. Gitterman, MD, Vice ChairpersonJeffrey M. Brown, MD, MPHLance A. Chilton, MDWilliam H. Cotton, MDThresia B. Gambon, MDPeter A. Gorski, MD, MPAColleen A. Kraft, MDAlice A. Kuo, MD, PhDGonzalo J. Paz-Soldan, MDBarbara Zind, MD

CONTRIBUTORRicky Choi, MD, MPH – Chairperson, SpecialInterest Group on Immigrant Health

LIAISONSBenjamin Hoffman, MD – Chairperson, IndianHealth Special Interest GroupMelissa A. Briggs, MD – Section on MedicalStudents, Residents, and Fellowship TraineesFrances J. Dunston, MD, MPH – Commission toEnd Health Care DisparitiesCharles R. Feild, MD, MPH – Chairperson, Pre-vention and Public Health Special InterestGroupM. Edward Ivancic, MD – Chairperson, RuralHealth Special Interest GroupDavid M. Keller, MD – Chairperson, CommunityPediatrics Education and Training SpecialInterest Group

STAFFCamille Watson, MS

REFERENCES

1. Okie S. Immigrants and health care—atthe intersection of two broken systems.N Engl J Med. 2007;357(6):525–529

2. Child Trends. Immigrant children. Availableat: www.childtrendsdatabank.org/?q=node/333. Accessed July 19, 2012

3. United States-Mexico Border Health Com-mission. What is defined as the border

region? Available at: www.borderhealth.org/show_faq.php?id=16. Accessed July 19,2012

4. Foundation for Child Development. Chil-dren in immigrant families: essentialto America’s future. Available at: http://fcd-us.org/node/1232. Accessed July 19,2012

5. Fortuny K, Ajay C. Children of Immigrants:Growing National and State Diversity. Brief5. Washington, DC: The Urban Institute;2011

6. Fadiman A. The Spirit Catches You and YouFall Down: A Hmong Child, Her AmericanDoctors, and the Collision of Two Cultures.New York, NY: Noonday Press; 1998

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7. Fortuny K, Hernandez DJ, Ajay C. YoungChildren of Immigrants: The Leading Edgeof America’s Future. Brief 3. Washington,DC: The Urban Institute; 2010

8. Conroy K, Sandel M, Zuckerman B. Povertygrown up: how childhood socioeconomicstatus impacts adult health. J Dev BehavPediatr. 2010;31(2):154–160

9. Mendoza FS. Health disparities and chil-dren in immigrant families: a researchagenda. Pediatrics. 2009;124(suppl 3):S187–S195

10. Lansford JE, Deater-Deckard K, BornsteinMH, eds. Immigrant Families in Contempo-rary Society. New York, NY: Guilford Press;2007

11. US Citizenship and Immigration Services.Public Charge Fact Sheet, April 2011. Availableat: www.uscis.gov/portal/site/uscis/menuitem.5af9bb95919f35e66f614176543f6d1a/?vgnextoid=775d23cbea6bf210VgnVCM100000082ca60aRCRD&vgnextchannel=8a2f6d26d17df110VgnVCM1000004718190aRCRD.Accessed July 19, 2012

12. National Immigration Law Center. How areimmigrants included in health care re-form? Washington, DC: National Immigra-tion Law Center; April 2010. Available at:www.nilc.org/contact_us.html. AccessedJuly 19, 2012

13. Flores G, Laws MB, Mayo SJ, et al. Errors inmedical interpretation and their potentialclinical consequences in pediatric encoun-ters. Pediatrics. 2003;111(1):6–14

14. Singh GK, Kogan MD, Dee DL. Nativity/immigrant status, race/ethnicity, and so-cioeconomic determinants of breastfeedinginitiation and duration in the United States,2003. Pediatrics. 2007;119(1 suppl 1):S38–S46

15. Capps R, Fix M, Ost J, Reardon-Anderson J,Passel JS. The Health and Well-Being ofYoung Children of Immigrants. Washington,DC: The Urban Institute; 2004

16. Liu J, Probst JC, Martin AB, Wang JY, Sali-nas CF. Disparities in dental insurancecoverage and dental care among US chil-dren: the National Survey of Children’sHealth. Pediatrics. 2007;119(suppl 1):S12–S21

17. Strine TW, Barker LE, Mokdad AH, Luman ET,Sutter RW, Chu SY. Vaccination coverage offoreign-born children 19 to 35 months ofage: findings from the National Immuniza-tion Survey, 1999-2000. Pediatrics. 2002;110(2 pt 1):e15

18. Tienda M, Haskin R. Immigrant children:introducing the issue. Immigrant Children.2011;21(1):3–18

19. Kupersmidt JB, Martin SL. Mental healthproblems of children of migrant and sea-sonal farm workers: a pilot study. J AmAcad Child Adolesc Psychiatry. 1997;36(2):1–9

20. Fuller B, Bridges M, Bein E, et al. The healthand cognitive growth of Latino toddlers: atrisk or immigrant paradox? Matern ChildHealth J. 2009;13(6):755–768

21. Legal Information Institute. Immigrationlaw: an overview. Available at: www.law.cornell.edu/wex/Immigration. Accessed July19, 2012

22. Chaudry A, Capps R, Pedroza JM, CastenadaRM, Santos R, Scott MM. Facing Our Future:Children in the Aftermath of ImmigrationEnforcement. Washington, DC: The UrbanInstitute; 2010

23. McLaurin J, ed; American Academy of Pe-diatrics. Guidelines for the Care of MigrantFarmworker’s Children. Elk Grove Village, IL:American Academy of Pediatrics; 2000

24. Migrant Clinician’s Network. Children’shealth. Available at: www.migrantclinician.org/issues/childrens-health.html. AccessedJuly 19, 2012

25. Ku L, Broaddus M. Coverage for ParentsHelps Children, Too. Washington, DC: Centeron Budget and Policy Priorities; 2006

26. American Academy of Pediatrics Committeeon Pediatric Workforce. Culturally effectivepediatric care: education and trainingissues. Pediatrics. 1999;103(1):167–170

27. Hagan JF, Jr, Shaw JS, Duncan P, eds. BrightFutures: Guidelines for Health Supervisionof Infants, Children, and Adolescents. 3rded. Elk Grove Village, IL: American Academyof Pediatrics; 2008

28. Pickering LK, Baker CJ, Kimberlin DW, LongSS, eds; American Academy of Pediatrics.Red Book: 2012 Report of the Committee onInfectious Diseases. 29th ed. Elk Grove Village,IL: American Academy of Pediatrics; 2012

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CLINICAL REPORT

Parent-Provider-Community Partnerships: OptimizingOutcomes for Children With Disabilities

abstractChildren with disabilities and their families have multifaceted medical,developmental, educational, and habilitative needs that are best ad-dressed through strong partnerships among parents, providers, andcommunities. However, traditional health care systems are designedto address acute rather than chronic conditions. Children with disabil-ities require high-quality medical homes that provide care coordina-tion and transitional care, and their families require social and finan-cial supports. Integrated community systems of care that promoteparticipation of all children are needed. The purpose of this clinicalreport is to explore the challenges of developing effective community-based systems of care and to offer suggestions to pediatricians andpolicy-makers regarding the development of partnerships among chil-dren with disabilities, their families, and health care and other provid-ers to maximize health and well-being of these children and their fam-ilies. Pediatrics 2011;128:795–802

INTRODUCTIONChildren with special health care needs are a group of 10 million USchildren with a wide variety of conditions, medical needs, and caregiv-ing requirements.1 However, children with disabilities, a subset of chil-dren with special health care needs, tend to have more complexconditions and functional impairments, often with technology depen-dencies and recurrent hospitalizations. In fact, 6.3% of US childrenbetween 5 and 15 years of age have 1 or more disabilities, and approx-imately 1%, or nearly one-half million children, are unable to care forthemselves.2 Over the past 50 years, the number of children living withdisabilities has tripled, largely as the result of health care advancesthat have allowed the survival of children with conditions that werehistorically incompatible with life.3 Children and adolescents have hadthe highest growth rate of disability of any age group during the pastdecade.3 Despite these changing demographics, the current system ofhealth care continues to use an outdated system that emphasizesacute illness and well-child care at the expense of long-term manage-ment of chronic conditions and disabilities.

Historically, hospital-based or institutional care was the only option formost children with complex medical conditions, technology depen-dence, and significant behavioral and emotional needs. More recently,social policy has promoted community-based programs that providecare for childrenwith disabilities in their homes and communities.4 For

Nancy A. Murphy, MD, Paul S. Carbone, MD, and theCOUNCIL ON CHILDREN WITH DISABILITIES

KEY WORDSdisabilities, children with special health care needs, community,medical home

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authorshave filed conflict of interest statements with the AmericanAcademy of Pediatrics. Any conflicts have been resolved througha process approved by the Board of Directors. The AmericanAcademy of Pediatrics has neither solicited nor accepted anycommercial involvement in the development of the content ofthis publication.

The guidance in this report does not indicate an exclusivecourse of treatment or serve as a standard of medical care.Variations, taking into account individual circumstances, may beappropriate.

www.pediatrics.org/cgi/doi/10.1542/peds.2011-1467

doi:10.1542/peds.2011-1467

All clinical reports from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2011 by the American Academy of Pediatrics

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Guidance for the Clinician inRendering Pediatric Care

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example, Healthy People 2010 set agoal of reducing to zero the number ofchildren and youth living in congregatecare settings. These well-intentionedefforts to care for all children with dis-abilities in their homes and communi-ties rather than congregate care cen-ters have benefitted many childrenand families. However, community-based care has also brought new andunanticipated challenges for somechildren with disabilities, their fami-lies, communities, and health care sys-tems. The purpose of this clinical re-port is to explore the challenges ofdeveloping effective community-basedsystems of care and to offer sugges-tions to pediatricians and policy-makers regarding the development ofpartnerships among children with dis-abilities, their families, and healthcare and other providers to maximizethe health and well-being of these chil-dren and their families.

ADDRESSING THE NEEDS OFCHILDREN WITH DISABILITIES

Children With Disabilities RequireMedical Homes

It is a national health care objective toensure that all children with specialhealth care needs have access to com-prehensive health care consistent withthe standard of a medical home.5,6 Acore component of community-basedsystems of care, the medical home ide-ally comprises providers who areknowledgeable in the area of chroniccondition management and activelyscreen all children for developmentaldisability.4 Children with disabilitiescared for in medical homes that pro-vide care coordination benefit from in-creased access to subspecialty care,fewer missed days of school, and de-creased family financial burden.7

Moreover, having a medical home is apredictor for less inpatient and emer-gency department utilization8 andfewer unmet medical and support-

service needs.9 The longitudinal rela-tionship between medical home pro-viders, children with disabilities, andtheir families provides a comfortableand trusted framework for shareddecision-making and, in some in-stances, end-of-life discussions. De-spite these benefits, only half of all chil-dren with special health care needscurrently receive care consistent withan ideal medical home, a proportionthat is significantly lower than that oftheir typically developing peers.7 Livingin poverty or certain geographic loca-tions and having amore severe disabil-ity or certain conditions, such as au-tism, further limit a child’s access to amedical home.9–11

Beyond access, care coordinationwithin themedical homematters. Carecoordination facilitates strong part-nerships between families and physi-cians and supports shared medicaldecision-making. Providers beyond themedical home are frequently involvedin the care of children with disabilitiesin emergency departments, subspe-cialty clinics, and hospitals. Even if theydo not participate directly in care de-livery, medical homes can collaboratewith providers and families to fostertrust, provide information, and assistin treatment planning.12 Without suchcollaborations, children with disabili-ties are at increased risk of experienc-ing adverse events related to delayedor incomplete information transfer be-tween providers.13 However, nearlyhalf of all children with special healthcare needs do not receive adequatecare coordination, at least in part be-cause of inadequate payment to pro-viders.14,15 Eliminating barriers to ef-fective care coordination within themedical home is essential if pediatricsystems of care are to effectively ad-dress the needs of children withchronic conditions and disabilities.

Pediatricians have a vital role inlinking medical homes with other

community-based services for chil-dren with disabilities and theirfamilies. With universal approachesto developmental surveillance andscreening, providers can make timelyreferrals for at-risk children to educa-tional services, such as early interven-tion and special education programs.Familiarity with the Individuals WithDisabilities Education Act and Section504 of the Rehabilitation Act can helppediatricians effectively advocate forchildren with disabilities and theirfamilies in the development and imple-mentation of individualized educa-tional plans that are family centeredand goal directed.16,17 Likewise, themedical home should be a clearing-house of information for potentialsources of support for families and as-sist in providing medical informationto agencies to facilitate the eligibilityprocess.18 For example, the Supple-mental Security Income (SSI) programcan provide financial assistance andestablish eligibility for other vital ser-vices that may not otherwise beaccessed.19

Although financing the critical aspectsof the medical home has been a bar-rier for implementation, recent na-tional policy changes have improvedthe outlook on providing these ser-vices for children with disabilities. TheChildren’s Health Insurance ProgramReauthorization Act of 2009 containsseveral provisions that support stateinitiatives to strengthen medicalhomes for children with disabilities.For example, Idaho and Utah are usingelectronic health records and otherhealth information technology andplacing medical home coordinators inprimary and subspecialty practices toimprove care coordination.20 In addi-tion, section 2702 of the AffordableCare Act (Health Home for EnrolleesWith Chronic Conditions) providesstates the option to receive an en-hanced federal match if they amend

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state plans to fund medical home ser-vices for children with disabilities.21

Youth With Disabilities RequireTransitional Care

Every year, more than one-half millionyouth with disabilities transition toadulthood.22 This process may includeparticipation in postsecondary educa-tion, vocational training, employment,independent or supported living ar-rangements, and adult health care sys-tems. However, for children with com-plex chronic conditions and lifelongfunctional limitations, the transitionprocess can be complex and fraughtwith barriers, particularly for thosewho are uninsured, poor, or lackingmedical homes or who have more se-vere disabilities.23 Not all youth withdisabilities transition fully into inde-pendent or supported living arrange-ments; for example, more than half ofyoung adults with autism continue tolive with their parents.24 Uninterruptedcomprehensive health care; coordi-nated transfers of medical informa-tion; and accessible, affordable, andcontinuous health insurance coverageare core elements of successful healthcare transitions.25 Lack of adult pro-vider expertise and experience in thecare of youth with child-onset disabili-ties creates additional access barri-ers, even for those young adults withinsurance coverage. Changes in insur-ance rules and training for themedicalworkforce would improve transitionprocesses.26 Several pilot programsthat provide clinical services duringthe late adolescent/young adult yearsor deliberate transition-specific carecoordination offer promising ap-proaches to health care transitions foryouth with disabilities.26

Pediatricians can assist in the transi-tion of youth with disabilities into adulthealth care systems by preparing fam-ilies well in advance, assisting in theidentification of adult providers, and

communicating relevant patient infor-mationwith adult providers via writtenmedical summaries and current careplans. Provisions in the IndividualsWith Disabilities Education Act man-date the development of an individual-ized transition plan (ITP) to prepareyouth with disabilities to enter theadult community. Pediatricians can as-sist youth with disabilities by encour-aging pursuit of identified vocationalgoals and advocating for implementa-tion of an appropriate individualizedtransition plan.27

ADDRESSING THE NEEDS OFFAMILIES OF CHILDREN WITHDISABILITIES

Parents of Children WithDisabilities Need Opportunities toPromote Their Own Health andWell-being

Parents of children with disabilitiesoften experience unrecognized and,therefore, unaddressed negative con-sequences of long-term caregiving.They are in poorer physical and emo-tional health than are parents of typi-cally developing children.28,29 Whencompared with others, parents of chil-dren with cerebral palsy reportgreater chronic distress and higherrates of back problems, migraineheadaches, stomach/intestinal ulcers,and chronic pain.30 Parents of childrenwith technology dependencies reportlimited time for sleep and for partici-pation in social and community activi-ties.31 Behavioral problems in childrenwith autism spectrum disorders arestrongly associated with parentalstress.32,33

When parents of children with disabil-ities experience poor health, they maybe less able to care for their children,which sets up a vicious cycle of nega-tive outcomes for all family mem-bers.30,34 In fact, the physical health ofparents is directly associated with thephysical health of their children with

cerebral palsy, and theirmental healthis significantly associated with the psy-chosocial function and total quality oflife of their children.35 Strategies thatpromote the health and well-being ofparents might benefit the entire familythrough these complex, reciprocal in-teractions. For example, resilient fam-ilies of children with autism find a pos-itive meaning in the disability, mobilizeresources, and gain spiritual strength,which culminates in greater familycohesion and appreciation of life.36

Linking parents of children with dis-abilities to appropriate family organi-zations and peer support has beenshown to positively affect both parentsand children.37–40

Siblings of Children WithDisabilities Need Support

Living with a child with a disabilitychanges the childhood experiencefor siblings. Many siblings reportthat family routines are focused andplanned around the sibling with adisability. Older siblings report thatthey have provided nursing and re-spite care, which limits their owntime for social activities outside thehome. Nearly half of all siblings re-port that their attendance and per-formance at school is negatively af-fected by the home care regimen of asibling dependent on technology.31

The caregiving responsibilities andfrustration about perceived competi-tion for parental attention rendersiblings of children with disabilitiesat heightened risk of negative psy-chological effects such as anxietyand depression.40 Despite these chal-lenges, nearly 40% of parents of chil-dren with developmental disabilitiesreport positive outcomes for sib-lings.41 Family-based interventionsthat enrich sibling experiences whileminimizing negative consequencesare needed.

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Parents of Children WithDisabilities Need Financial Support

Forty percent of families with childrenwith special health care needs experi-ence financial burden related to theirchild’s condition.42 Although most fam-ilies of children with special healthcare needs have medical insurance,underinsurance resulting in financialstress preferentially affects families ofchildren with disabilities.43 Reports offinancial hardship are more frequentin families with children with more se-vere disabilities, those with lower in-comes,44 and those with certain condi-tions such as autism spectrumdisorders.45,46 Hopeful investment inunproven interventions can further de-plete family finances.

At the same time that families ofchildren with disabilities experiencegreater financial demands, nearly 30%of them also contend with loss of in-come secondary to the need to reduceor eliminate employment.47 Althoughsome innovative employers offer bene-fits that might support employees ofchildren with disabilities,48 having achild with a disability is still associatedwith reduced parental employment.Single parents of children with tech-nology dependencies are 15 timesmore likely to quit employment sec-ondary to care responsibilities athome than those in 2-parent families.49

Lower financial stress is associatedwith receipt of coordinated care in amedical home, having adequate insur-ance, and access to organized and ac-cessible community-based service sys-tems.42 Beyondreducingfinancial stress,employment builds resilience in parentsby offering challenges and rewards thatare distinct from the complex responsi-bilities of caregiving.49

The recently enacted Affordable CareAct contains several provisions withinprivate insurance reform that benefitfamilies of children with disabilities:(1) elimination of lifetime and annual

caps on benefits; (2) guaranteed cov-erage through elimination of preexist-ing condition denials; and (3) expan-sion of dependent coverage up to theage of 26 years. Once exchanges areestablished by 2014, benefits forhealth plans must include chronic dis-ease management, behavioral healthtreatment, habilitation and rehabilita-tion services and devices, and oral andvision care. The scope of each of thesebenefits is yet to be defined.21

Families of children with disabilitiesrely on a variety of public and privateprograms such as private insurance,Title V programs, special educationservices, Supplemental Security In-come (SSI), and Medicaid. SSI can bean important source of financial sup-port for low-income families of chil-dren with disabilities.19 Since 1993, theFamily Medical Leave Act (FMLA) hasafforded parents of children with dis-abilities the option of taking up to 12weeks of excused absence from theirwork per year to better balance workand family obligations.50 The mix ofsupport variesdependingongeographiclocation, parental income, and eligibilityfactors, and pediatricians can guide par-ents as they navigate these complex sys-tems of funding.3 Family coordinators inmedical homes can identify communityresources and offer supports for bothfamilies and providers of children withdisabilities.51

Families Require Options for High-Quality Care Outside the Home

With proper support, most childrenwith disabilities thrive at home.52 Al-though home is the ideal place formost children, it may not be the bestplace for every child. In 1997, approxi-mately 1 per 1000 (nearly 25 000) chil-dren and youth were cared for in con-gregate care settings, including grouphomes and residential centers.53

Healthy People 2010 established an ob-jective to reduce this number to zero.

Five years later, the percentage of chil-dren and youth cared for in congre-gate care settings was nearly un-changed,53 which may relate to theunpredictable and often unavoidablecircumstances that necessitate thatchildren with disabilities receive inter-vals of care outside of their homes. Thelong-term demands of addressing thephysical, emotional, and behavioralneeds of some children with disabili-ties may periodically exceed thatwhich their parents and families canmanage, particularly when financialand social supports are limited.28 Insuch instances, the stress of caregiv-ing can lead to disrupted parentingand poor child outcomes.54 For exam-ple, children with disabilities are 3 to 4times more likely to be neglected orabused than are typically developingchildren.55 Community-based congre-gate care options can offer safe har-bor for children with disabilities whenfamilies find themselves in need of re-spite or when facing crisis situations.By maintaining strong partnerships,pediatricians can recognize families incrisis and assist them with finding ap-propriate resources.

ADDRESSING NATIONAL GOALS

Communities Must Promote theParticipation of All People,Including Children With Disabilities

The World Health Organization’s Inter-national Classification of Functioncharacterizes people with disabilitiesaccording to their ability to participatein meaningful community activitiesrather than diagnostic groupings. Itemphasizes what children do ratherthan how they do it and note that thepresence of a disability does not sug-gest an absence of health.56 The partic-ipation of each child is influenced bycontextual elements such as interac-tions between the child, family, andcommunity. Although all children, in-cluding those with disabilities, can

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benefit from participation in sports,recreation, and physical activities, per-sonal and societal barriers need to ad-dressed.57 In general, children withdisabilities are less involved in leisureactivities than their peers and engagein activities that are more passive,home based, and less varied.58 Parentsand children with physical disabilitiesdescribe architectural barriers, re-strictive policies, limited personal as-sistance, cultural biases, and inade-quate social support asmajor barriersto community participation.59 Age, gen-der, activity limitations, family prefer-ences, and coping, motivation, and en-vironmental resources are otherdeterminants of participation.58

Coordinated Systems of Care forChildren With Disabilities NeedUniversal Implementation

A well-functioning system of family-centered, coordinated health care forchildren with disabilities would com-prise a full range of health care, edu-cation, and social services.50 The over-arching goal would be to address eachchild’s mental, physical, emotional,and social needs to optimize functionand participation according to the In-ternational Classification of Functionmodel of disability. Regardless of thepoint of entry, children and their fami-lies would be linked to other necessaryservices, because the systemwould beaccessible, flexible, and responsive.Family partnerships would lie at thehub of this system, consistent with thefact that families know their childrenbest and make decisions on behalf oftheir children.50 This community-basedsystem of service would be universallyaccessible, equitable, and organized topromote the cost-effective provision ofevidence-based care.60

A comprehensive community-basedsystem has been conceptualized butnot implemented. Despite the evidencethat a sense of partnership between

families and providers is associatedwith fewer unmet needs and betteroutcomes overall, of US families of chil-dren with special health care needs, 1million (14%) report a lack of suchpartnerships.61 Poverty, minority sta-tus, lack of insurance, and greater se-verity of functional limitations are as-sociated with greater risk of lacking asense of partnership.61 The barriers toimplementation include lack of inte-gration, coordination, and communi-cation between various service provid-ers and agencies; lack of adequatefunding to develop system infrastruc-ture; lack of funding sources to meetchildren’s needs; and balancing pri-vacy concerns with service providers’need for information.50 Although oursociety expects that parents will un-conditionally and indefinitely care fortheir children with disabilities, ourhealth care system offers, at best, afragmented and 1-size-fits-all re-sponse to their individualized and of-ten changing needs.62 The AffordableCare Act addresses several of theseshortcomings with provisions thatstrengthen community-based optionsfor long-term services and supportsfor children with disabilities: (1) theCommunity First Choice Option; (2)new options for home- and community-based services in Medicaid; and (3) ex-tension of “money follows the person”demonstration grants.63

Analogous to Russian nesting dolls,children with disabilities do not live inisolation but are embraced by theirparents, who function within familyunits, which are, in turn, nested incommunities and, ultimately, in localand national health care systems.64

This social ecological framework of hu-man development illustrates the criti-cal importance of community-basedsystems response to the multifac-eted and dynamic interdependenciesamong children with disabilities andtheir parents, families, communities,

and health care systems.65 Becausethe characteristics of each child andfamily, their shared history, and thesocial, economic, and cultural contextswithin which they find themselvescombine to create an infinite variety ofcircumstances,66 care must be individ-ualized and based on the tenets ofmutual trust, respect, and family-centered decision-making.

SUGGESTIONS FOR PEDIATRICIANS

1. Provide a medical home for childrenwith disabilities that emphasizes thefamily as a valued partner indecision-making, coordinates carewith subspecialists, and links fami-lies with community-based services.

2. Ensure coordinated, deliberate, andcommunity-based transitions for allyouth with disabilities by advocatingfor access to appropriate educa-tional and related community-basedtransition services and coordinatingwith adult medical providers.

3. Recognize the unique needs of par-ents and siblings of children withdisabilities, and offer strategies forthem to promote their own physicaland emotional health and well-being, including links to family sup-port groups and mental healthservices.

4. Understand and promote access tofinancial supports for families ofchildren with disabilities, includingMedicaid, Supplemental Security In-come, and Family Medical Leave Actprograms.

5. Recognize caregiver stress and en-sure that all parents are aware ofself-care strategies and options forhigh-quality care for their childrenwith disabilities, both inside andoutside the home.

6. Encourage participation of childrenwith disabilities and their familiesin educational, recreational, andsocial activities by actively linking

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them to community-based agenciesand organizations.

7. Adopt a family-centered approachto the care of children with disabil-ities by involving families in all as-pects of medical decision-making.

SUGGESTIONS FOR POLICY-MAKERS

1. Ensure enforcement of health in-surance reforms that benefit chil-dren with disabilities under the Af-fordable Care Act, including theelimination of lifetime and annualcaps on benefits, guaranteed cov-erage through elimination ofpreexisting-condition denials, andthe expansion of dependent cover-age up to the age of 26 years.

2. Adopt models that support essen-tial functions of medical homes forchildren with disabilities, includingcare coordination and telephonemanagement.67

3. Advocate for the continuous provi-sion of vital public health servicesthat support families of childrenwith disabilities, including state Ti-tle V programs and Family-to-FamilyHealth Information Centers.

4. Maintain and extend public cover-age options (Medicaid and Chil-dren’s Health Insurance Program)for children with disabilitiesthrough Affordable Care Act initia-tives, such as simplifying eligibilityrequirements and amending stateMedicaid plans to fund medicalhome activities.

LEAD AUTHORSNancy A. Murphy, MDPaul S. Carbone, MD

COUNCIL ON CHILDREN WITHDISABILITIES EXECUTIVE COMMITTEE,2010–2011Nancy A. Murphy, MD, ChairpersonRichard C. Adams, MDRobert T. Burke, MD, MPH

Sandra L. Friedman, MDMiriam A. Kalichman, MDSusan E. Levy, MDGregory S. Liptak, MD, MPHDouglas McNeal, MDKenneth W. Norwood Jr, MDRenee M. Turchi, MD, MPHSusan E. Wiley, MD

PAST EXECUTIVE COMMITTEEMEMBERSLarry W. Desch, MDEllen Roy Elias, MDPaul H. Lipkin, MD, Immediate PastChairpersonPaul J. Sagerman, MD

LIAISONSGeorgina Peacock, MD, MPH – Centers forDisease Control and PreventionNora Wells, MSEd – Family VoicesBonnie Strickland, PhD – Maternal and ChildHealth BureauCarolyn Bridgemohan, MD – Section onDevelopmental and Behavioral PediatricsMax Wiznitzer, MD – Section on Neurology

STAFFStephanie Mucha Skipper, MPH

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DISABILITIESNancy A. Murphy, Paul S. Carbone and COUNCIL ON CHILDREN WITH

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