Examining Permanent Contraception for Children, Adolescents, and Young Adults With Intellectual Developmental Disorder: Ethical, Legal, and Medical Considerations: Clinical Report

Both the American Academy of Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG) have written statements that address permanent contraception of individuals.^1,2  With regard to permanent sterilization of individuals with intellectual developmental disorder, the current ACOG statement does not address this topic, although the previous statement included individuals with developmental disability.³  In the years since the previous AAP statement, authored by the Committee on Bioethics, there have been significant advances in the medical and surgical options available for contraception and management of menses as well as significant broadening of the ethical arguments surrounding this topic. This interdisciplinary authored statement reflects collaborations among experts to provide updated information about permanent contraception, including recommendations and best practices to address contraception and menstrual hygiene, for children and adolescents with intellectual developmental disorder. This new statement frames the issues (ethical, legal, and medical) of permanent contraception in children, adolescents, and young adults with intellectual developmental disorder, emphasizing the importance of utilizing long-acting reversible contraception whenever possible and providing minimally invasive treatment to support the best interests of individuals. Although permanent contraceptive procedures may also be considered in the management of other medical conditions in minors, those discussions are distinct from these ethical guidelines, which will focus on the care of individuals with intellectual developmental disorder. Furthermore, this statement will not address permanent contraception for individuals with physical disability that retain capacity to make their own decisions. In addition, whereas the previous statements primarily addressed minor patients assigned female at birth, this clinical report expands on previous versions to include the ethical considerations for contraception procedures performed on people of any sex or gender as well as implications for minor and future majority age patients with intellectual developmental disorder.

In discussions of reproductive justice, use of terms to describe people of different sexes and genders is central to the conversation. It is important to acknowledge that most, but not all, bodies designated as female have uterus and ovaries and that most, but not all, of bodies designated male have penis and testicles. In addition, people with intellectual disability may have barriers to communicating their gender identity or preferred terminology around their body. Given the history of sex-based discrimination in this area and the terminology used throughout the literature, we will use the terms male to describe people with a penis and testicles and female to describe people with ovaries and a uterus. If other language is used, it is because the cited source used the language provided.

A surgical procedure performed with the intention of permanently altering an individual’s ability to reproduce.¹  Permanent contraception is often used interchangeably with “sterilization” in other references. Here, the authors use the term “permanent contraception” in reference to procedures that intentionally inhibit procreation and “sterilization” in reference to historical and legal cases, where relevant.

The essential features of intellectual development disorder (intellectual disability) are deficits in general mental abilities (criterion A) and impairment in everyday adaptive functioning, in comparison with an individual’s age-, gender-, and sociocultural-matched peers (criterion B), and onset is during the developmental period (criterion C). The diagnosis of intellectual developmental disorder is based on clinical assessment as well as standardized intellectual and functional testing.⁴ 

Alternatively, intellectual disability is a condition characterized by significant limitations in both intellectual functioning and adaptive behavior that originates before the age of 22 years.⁵ 

A brief historical review of the use and abuse of permanent contraception in the United States is necessary to understand the concerns raised regarding requests for these procedures in minors with intellectual developmental disorder as well as the restrictions surrogates face in seeking permanent contraception procedures.^1,6  Although permanent contraception procedures may be performed on people of any sex or gender, the technical procedures for surgery carry different risk and efficacy profiles depending on anatomy, with female permanent contraception procedures typically being less effective, more costly, and associated with greater surgical risks to the individual. Despite this fact, among married heterosexual couples, nearly twice as many couples choose female partner permanent contraception over male (30% versus 17%).⁷  There are also reported differences in use of female permanent contraception practices across racial, ethnic, and socioeconomic demographics. Some reasons for these differences include parity, certain medical conditions such as HIV, insurance status, and access to desired form of contraception.^8,9  Female permanent contraception (via bilateral tubal ligation or bilateral salpingectomy) is one of the most straightforward surgical procedures performed, yet has enormously complex historical, sociological, and ethical perspectives.¹  It is important to note that male permanent contraception (via vasectomy) has been performed since the late 1800s, with forced sterilization beginning in the early 1900s, initially targeting incarcerated men and those with intellectual disabilities. However, by the 1930s, sterilization surgical techniques evolved and shifted to primarily female patients.¹⁰ 

When freely chosen, permanent contraception is a procedure that allows an individual to exercise their reproductive autonomy and promote their own best interests. Providers, thus, have an ethical duty to ensure that individuals considering permanent contraception procedures are informed of the risks, benefits, and alternatives, and, in choosing permanent contraception, do so with a clear understanding and without coercion. Individuals with intellectual developmental disorder who cannot provide informed consent are often denied permanent contraception for fear that this decision, when made by a surrogate decision-maker, could be considered a form of coercion, exploitation, and maltreatment. Involuntary sterilization refers to any sterilization procedure performed on an individual who cannot or does not freely consent, including procedures performed under coercion, manipulation, and/or against objection, or the effect of which they are unable to understand. Indeed, there is a long and sordid history of involuntary sterilization conducted not to address the best interests of the individual, but instead, to minimize the perceived burden on society and caregivers and in the unfounded anticipation of improving the overall health of the population (ie, eugenics).⁸  The first involuntary sterilization law in the United States was passed in 1907 in Indiana, motivated by a desire to control supposedly “defective lineages.”¹¹  By 1909, California passed the third sterilization bill in the United States in an attempt to apply a scientific solution to a social problem by allowing the sterilization of an individual or inmate if such action would “improve his or her physical, mental, or moral condition.” Over the next several decades, “compulsory sterilization” was described as a public health strategy to eliminate undesirable defects from a population.¹¹  During this time, immigrants and underrepresented minorities were disproportionately affected leading to mistrust in the health care system that persists today. The number of sterilizations performed on those considered “unfit” to reproduce, which included those considered to be developmentally disabled, increased significantly after the US Supreme Court decision in 1927 in Buck v Bell, which legitimized involuntary sterilization.

The long history of sterilization abuse, which continued through the 1960s and was supported by an active eugenics movement, provides context for ethical discussions regarding permanent contraception for those who cannot autonomously consent for the procedure.^12–14  In reaction to this, history, state, and federal law and judicial rulings have tightly restricted access to permanent contraception for minors with intellectual developmental disorder, as they are a vulnerable population still at risk for mistreatment, abuse, and marginalization. These restrictions are in sharp contrast to the authority parents and surrogates have in most other spheres of medical decision-making. Although these legal restrictions were developed to protect this vulnerable population, there has been increasing concern that these well-intentioned efforts have limited children, adolescents, and adults with intellectual developmental disorder and their families from accessing care that may be in their best interests. Individuals with intellectual developmental disorder should neither be involuntarily subjected to a permanent contraception procedure that is not in their best interest, nor denied this standard therapy if it is the best option to meet their needs, respecting their inherent reproductive rights.¹⁵  This statement will provide a thorough discussion of the legal, ethical, and medical considerations regarding requests for permanent contraception for minors, bringing forth a balanced approach to the care of children, adolescents, and young adults with intellectual developmental disorder.^15,16 

The issue of access to permanent contraception for individuals with intellectual developmental disorder has been addressed and/or regulated at the international, federal, and state levels, and legislation continues to evolve. In general, such regulations recognize an individual’s right to privacy and control over their reproductive future, although these rights vary from state to state; accordingly, they should be considered while promoting the individual’s best interests.

The United Nations Convention on the Rights of Persons with Disabilities recognizes in its preamble that “disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.”¹⁷  Additionally, the Convention recognizes that cisgender girls and women with disabilities are often at greater risk of coercion, maltreatment, and exploitation and, thus, are at risk for unintended pregnancies. According to recent estimates, the risk of sexual maltreatment and abuse for individuals with intellectual developmental disorder is 4 to 10 times higher than for individuals without these impairments.¹⁸  Article 17 of the Convention states that “[e]very person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others,” and Article 23 states that “persons with disabilities, including children, retain their fertility on an equal basis with others.”¹⁷  Furthermore, “[i]t appears that worldwide, there is a slow but definite move to uphold the rights of people with intellectual disability in line with Universal Human Rights, with consideration of their capacity to consent and their best interest.”¹⁹ 

In the United States, the application of sterilization laws is overwhelmingly directed at cisgender women, with very few cases regarding involuntary sterilization of men, demonstrating an element of gender discrimination.^20,21  There have been 2 significant US Supreme Court cases that have guided decisions regarding sterilization in the years since. In Buck v Bell, 274 U.S. 200 (1927), the Court held that a state statute permitting compulsory sterilization of the “unfit” did not violate the Due Process Clause of the 14^th Amendment and, thus, ushered in a period of increased state-mandated involuntary sterilization. Although this ruling has never been overturned, this case has not been cited for support in decades. In contrast, Skinner v State of Oklahoma 316 U.S. 535 (1942) was a US Supreme Court ruling that held that laws permitting the compulsory sterilization of criminals are unconstitutional if the sterilization law treats similar crimes differently. The Court held that such laws violated the Equal Protection Clause of the 14^th Amendment. Additionally, the Court found that the right to procreate was a fundamental right, which resulted in a decrease in involuntary sterilization procedures over the following decades.²¹ 

Federal policy regarding sterilization is limited to 42 CFR 50.203 – Sterilization of a mentally competent individual aged 21 or older. This regulation addresses sterilization of persons in federally assisted family planning projects but does not address procedures that are not federally funded. This federal policy prohibits sterilization of all people deemed incompetent, regardless of age, as well as all minors under the age of 18 years and typically developed adults who otherwise could consent to medical procedures but are between the ages of 18 and 21 years. Additionally, the regulation puts a strict limitation on the time within which the informed consent for the procedure must be obtained for these federally funded procedures (at least 30 but no more than 180 days), leading to logistical barriers and raising concerns that the policy ultimately restricts the reproductive autonomy of those it seeks to protect.¹⁶  To that point, the ACOG recently recommended that the Centers for Medicare and Medicaid Services redefine the validity time frame to provide informed consent to better align with the requirements under commercial or private insurance, thereby reducing access disparities among different socioeconomic and racial groups.²² 

Regulations surrounding sterilization for individuals with intellectual developmental disorder fall primarily to the states, with wide variability.²³  Although some states have statutes regarding sterilization of those with intellectual developmental disorder, others only address the issue through case law.¹²  Where laws and cases on permanent contraception do exist, there is generally no differentiation in ruling between people of any sex or gender. In addition to state law, individual hospitals and clinics have ethics standards and procedural frameworks to guide clinicians when considering these procedures for persons with intellectual developmental disorder. Judicial orders on such petitions are based on the authority of parens patriae, which is defined as the legal obligation a government has to protect its citizens, especially those who are unable to protect themselves.²¹ 

Often, the first step in judicial decision-making for cases in which sterilization of a patient with intellectual developmental disorder is considered is to determine whether the individual is competent to decide whether they would want to proceed with a planned permanent contraception procedure. A cognitive evaluation performed by a licensed psychologist experienced in evaluating individuals with intellectual developmental disorder is generally required to make such a determination. Those who are found capable of autonomous decision-making are legally empowered to consent to such procedures.^1,14  When individuals are not able to make medical decisions on their own behalf, a number of issues may be considered before a ruling on sterilization procedures. Most commonly, the court will focus on what is in the best interest of individuals with intellectual developmental disorder for whom sterilization is requested. Usually, this will require consideration of whether sterilization is the safest and least intrusive method to meet those interests.¹³  Courts will generally apply the best interest standard by including a number of factors in their consideration. The first and most important is the question of whether the intellectual disability will improve with time. If so, then reversible methods of contraception are preferable since they preserve the individual’s right and ability to make an autonomous choice in the future. If there is no possibility of improvement in the future, courts may consider the possibility of pregnancy (including pregnancy that may result from penile-vaginal intercourse without the patient’s consent or understanding). They may also consider the individual’s potential to safely parent a child. They must make a judgment about whether sterilization is sought in good faith with a focus on the individual’s benefit. They must consider whether the person will ever be capable of exercising meaningful reproductive choice and whether they have the potential for substantive interest in procreation.

The Americans with Disabilities Act (ADA) is relevant, even though it does not specifically address the question of sterilization of children, adolescents, and adults with intellectual developmental disorder. The goals of the ADA are to enable those with disabilities, including intellectual disabilities, to participate fully, with equal opportunity, to promote independent living, and achieve economic self-sufficiency. Reproductive autonomy is generally accepted as a component of a full life. Thus, the ADA would likely support maximization of reproductive autonomy, a point of view that would restrict sterilization to cases in which it could be argued that such a procedure would help a person with a disability to live a fuller life than would otherwise be possible.²⁴ 

An understanding of informed consent is critical to the discussion regarding permanent contraception in individuals with intellectual developmental disorder. The current concept of informed consent has roots in both ethical theory and law. The support for informed consent in ethical theory is found in the principle of respect for autonomy, which promotes individuals to make their own choices. It is anticipated that the choices that are made will reflect the person’s values and interests. Young children clearly lack the decision-making capacity required to act as autonomous agents. However, older children and adolescents with typical cognitive abilities demonstrate emerging autonomy and may display increasing interest in participating in discussions regarding their medical care; thus, the remainder of this statement will pertain to individuals with intellectual developmental disorder.

Adults with intellectual developmental disorder may also have limitations in their capacity for medical decision-making. However, if the informed consent process is conducted in an uncomplicated manner using developmentally appropriate language, adults with mild intellectual disability may be capable of making an informed medical decision on their own. The capacity to meaningfully participate in medical decision-making is not static and is dependent on the individual’s functional status, the presentation of the information, and the complexity and urgency of the medical situation. For those with limitations in decisional capacity or who lack the legal empowerment for decision-making, health care providers seek informed permission from surrogates, and when possible, assent from the patients, before any medical intervention. The goal of the informed consent process remains the same, protecting and promoting the health-related interests of the individual throughout medical decision-making.

As compared with those who retain decision-making capacity, surrogates of people with intellectual developmental disorder experience a more constrained framework for medical decision-making. Surrogates are expected to use substituted judgment when making decisions for adults who once had but have since lost their decision-making capacity. Surrogates are asked to make choices that actualize what the individual would have wanted based on their previously stated values and goals. This framework is not applicable for children or for adults who have never had capacity for medical decision-making; in these situations, the surrogate is expected to use a best interest standard to guide decisions. Individuals with limited capacity for independent medical decision-making may have interests best promoted by taking into account how those interests are manifest in specific care relationships. Therefore, the surrogate is not asked to consider the individual’s best medical interest in isolation but instead is expected to use a broader understanding of what is in the individual’s overall best interest, considering the care within the context of the family and their community. For individuals with intellectual developmental disorder, the surrogate is often a parent or family member. In these cases, the surrogate is expected to act in the best interest of the individual, maximizing benefits and minimizing harm and burdens to the individual. The primary focus centers on the needs of the individual, rather than utilizing decision-making as an opportunity for the surrogate to express preferences or to minimize the demands of caring for the individual.

In 2006, the case of Ashley X was published, sharing the story of a child with static encephalopathy and global developmental delays, both intellectual and physical. In this case, Ashley’s parents requested growth attenuation, hysterectomy, and removal of breast tissue to better provide care for her at home and minimize her long-term health risks. Requests for these treatments were carefully considered by an interdisciplinary team including her parents, physicians, and the hospital ethics committee, and the decision was ultimately made to proceed with these treatments, thereafter often referred to as the “Ashley Treatment.”²⁵  It is important to acknowledge that decisions for procedures, such as those involved in the Ashley Treatment, are complex and must be examined closely to include medical, legal, ethical, and social considerations. In Ashley’s case, the decision to pursue hysterectomy was made with several medical considerations in mind, only one of which was the desire to control fertility. Despite this, the appropriateness of performing a hysterectomy remains one of the most intensely debated aspects of the case.

Parental decision-making authority is constrained and not absolute. This concept of constrained parental authority in medical decision-making is necessary to minimize the potential risks when discussing available therapies and their implications on issues of sexuality, fertility, and parenting. Furthermore, the physician who performs the surgery is the physician responsible for the informed consent process. This is sometimes problematic, as clinicians who primarily care for adults with decision-making capability may be less familiar with the legal issues, surrogate decision-making process, or even what is required for assent from an adolescent. Nonetheless, both the pediatrician and surgeon have a fiduciary responsibility to the individual undergoing the procedure and an ethical duty to provide care that meets the individual’s needs, which may or may not correspond with what the surrogate requests.²⁶ 

There are a range of issues that may arise when considering reproductive options for adolescents with intellectual developmental disorder, some of which are gender specific. Although the ACOG and the AAP have previously authored statements on this topic, there currently is no consensus statement from the American Urologic Association when considering this dilemma in a male patient with intellectual developmental disorder.²⁷  As adolescents experience puberty and develop sexually, it is vital to thoroughly discuss these issues, including the patient’s right to an open future in regard to procreation, parenthood, and gender identity with the surrogate decision-makers and the patients, in the context of their developmental abilities. Without thoughtful discussion, it is potentially easy to conflate the fear of emerging sexuality, the risk of sexual abuse by caregivers or strangers, the difficulties of dealing with menstrual hygiene, the risk of contracting a sexually transmitted infection, and the desire to control fertility.^28–30  These are distinct but interrelated concerns, and no single intervention will address all issues for all patients. In exploring the treatment options for each of these concerns, it is important to recognize that permanent contraception may be considered as a therapeutic approach after other less-invasive strategies are pursued. When surrogate decision-makers request permanent contraception for minors with intellectual developmental disorder, it is important to investigate the rationale for the request. This conversation then provides an opportunity to more broadly provide sexuality education with developmentally appropriate content and to engage with individuals, families, and providers in shared decision-making around plans for permanent contraception.³¹  With multiple therapeutic options available for behavioral, contraception, and menstrual management ranging in risk profiles, efficacy, and invasiveness, it is important to carefully evaluate the reason an intervention is being requested and to promote the least invasive and restrictive alternative to achieve that goal. It should also be noted that some surgical procedures place individuals with disabilities at higher risk for complications, including pneumonia, sepsis, and 30-day mortality. Thus, the presence of an intellectual disability should be considered just one of many factors in shaping an individualized therapeutic plan that maximizes benefit and minimizes risk.³² 

Menarche and sexual development in adolescents with intellectual developmental disorder can raise anxieties in caregivers. Sometimes this anxiety leads caregivers to avoid discussing sexuality. Clinicians should address these anxieties and stress that it is important to provide information and education about sexuality to all children, adolescents, and young adults, including those with intellectual developmental disorder.^29,33  This information should be delivered in a way that is consistent with the adolescent’s level of understanding. Conversations regarding sexual development should begin during early childhood and continue into adulthood. Longitudinal discussions can ease anxieties associated with discussing sexual development. Sexuality education should address topics of masturbation; appropriate expression of sexual thoughts, feelings, and behaviors; menstruation; sexual intercourse; family planning; sexually transmitted infections; and sexual self-advocacy training, including basic sexual education on appropriate and inappropriate touching.^29,33  Educational and functional training may support self-management of menses in some menstruating individuals with intellectual developmental disorder, potentially circumventing the need for menstrual suppression. Other menstruating individuals, particularly those with dysmenorrhea or heavy menstrual bleeding, might benefit from the medical options of menstrual suppression.³⁴  The emergence of new forms of long-acting reversible contraception has provided new opportunities for menstrual suppression as well as contraception, some of which may be inserted under anesthesia, if necessary, to minimize anxiety. Premenstrual syndrome or premenstrual dysphoric disorder may be difficult to diagnose in some adolescents or young women with intellectual developmental disorder. Providers and parents should be alert to exacerbation of maladaptive behaviors, seizures, emotional lability, and self-injurious tendencies and monitor for functional responses to menstrual cycles. Premenstrual symptoms can often be managed medically.

In some cases, parents and clinicians consider hysterectomy as a way to both eliminate menses and prevent future pregnancy. It is generally not recommended as the primary therapy for either indication, as hysterectomy is a more invasive surgical intervention. Although hysterectomy does result in permanent contraception, this procedure should be considered only when specific medical benefits justify the risk, not simply in the pursuit of permanent contraception alone. Instead, clinicians should inform parents about the many less invasive and reversible therapies that are available to achieve either of these goals and should only recommend permanent contraception as a last resort.^1,31,34  As a guiding principle, reversible, least-restrictive approaches should always be attempted first. The basis for this principle is that it safeguards against unnecessary infringement of individual’s rights by the state.³⁵  When assessing treatment options for individuals with intellectual developmental disorder, it is generally recommended that reversible options be preferentially selected and tried to preserve the child’s right to an open future. Permanent sterilization procedures often require a court order and legal approval for an individual, as per state requirements. Although female patients now have various options for nonpermanent contraception procedures, there has been little advancement in male contraception since the development of the vasectomy, leading to a disproportionate focus on females in this discussion. Clinicians could benefit from guidance on best practices when considering permanent contraception in a male patient with intellectual developmental disorder, as this issue is currently unresolved and further work is needed in this area.²⁷  Preserving the child’s right to an open future is an approach identical to the approach taken in the care of adolescents and young adults with typical cognitive abilities. For all individuals, counseling and education should be offered at a developmentally appropriate level.^1,30,31 

Clinicians and surrogate decision-makers may work with psychologists and other members of the individual’s health care and social support teams to seek care that improves the quality of life of each child, adolescent, and young adult, recognizing the long-term goal of supporting each individual’s open future by safeguarding opportunities for a healthy and fulfilling adulthood. Care must be individualized, recognizing that development and the acquisition of cognitive and life skills in those with intellectual disability may proceed more slowly than in individuals with typical development and require more supports and educational enrichment. When made in partnership among physician, surrogate, members of the individual’s health care and social support teams, and assenting individual (when appropriate), therapeutic decisions are better able to promote the health and well-being of the individual and improve the person’s quality of life with the least restrictive therapy available.

In considering the preferences of individuals with mild intellectual developmental disorder, there are 2 key considerations. One focuses on their capacity to make decisions about sexual activities, including sexual intercourse. The other focuses on their capacity to parent a child. Clinicians should assess each individual’s decision-making capacity to determine their ability to consent to sexual intercourse and, if necessary, conduct a psychological evaluation to verify their determination. The presence of an intellectual disability does not exclude the ability of an individual to consent to sexual intercourse. For individuals with the capacity to consent to sexual intercourse, contraception is crucial if their goal is not to procreate. Clinicians, thus, should discuss contraceptive options and choose the method that is most appropriate for the individual’s ability.

Many adults with intellectual disability desire to and can safely parent with appropriate family and community supports.³⁶  For these individuals, permanent contraception is a violation of their interests, and reversible forms of contraception would be appropriate. It is important to protect the future fertility of adolescents and young adults by providing them and their surrogates counseling regarding reversible interventions to manage concerns of menstrual hygiene as well as the need for contraception for patients of any sex or gender who can consent to sexual intercourse, safeguarding opportunities for their future adult lives. The development of long-acting reversible contraception provides options for nonpermanent long-term control of fertility and may be preferable for some patients. It is critical to consider the risks and benefits of alternative forms of contraception when considering the option of permanent contraception.

Health care policy should protect the rights of all individuals, including those with intellectual developmental disorder. Good clinical care promotes optimal medical and functional outcomes. Current regulations or case law in most states reflect contemporary medical recommendations by which permanent contraception for minors and young adults with intellectual developmental disorder is rarely needed. These regulations and practice guidelines were developed to preserve each individual’s fundamental right to procreate and be a parent, a right that is linked to our rights to privacy and self-determination. The regulations and guidelines reflect a recognition of our country’s sordid history in which many thousands of vulnerable individuals were involuntarily sterilized.

It is true that many people, regardless of their intellectual and developmental abilities, have no interest in procreation or parenting. For them, access to a permanent procedure might be preferable to other contraceptive options in their health care. Permanent contraception is a frequently chosen intervention among developmentally typical adults. It should, thus, be available and may meet the needs of some individuals with intellectual developmental disorder. Individuals with intellectual developmental disorder should have equal access to control of fertility via permanent contraception as their typically developed peers when this intervention is in their overall best interest. The care of each child and adolescent must be individualized to best meet their needs. The AAP acknowledges that some professional and patient advocacy organizations oppose permanent contraception that is performed without the individual’s freely given consent.^17,37  This approach would forbid any permanent contraception procedure for individuals who lack decisional capacity. However, this is not the position of the AAP. Permanent contraception should not be an isolated focus in addressing the reproductive health needs of children, adolescents, and young adults with intellectual developmental disorder. To do so would deny these individuals the same rights and the same medical treatments as other individuals. Permanent contraception may be considered as part of a continuum of treatment options that support every individual’s well-being and, thus, considered after all other options have been exhausted. When considering permanent contraception for an individual with intellectual developmental disorder, it is important to understand the state’s regulations and to seek legal counsel, where appropriate, as well as ethics consultation.

• Providers should understand the history of involuntary sterilization in the United States as a framework for understanding the current restrictions on sterilization for persons with intellectual developmental disorder.

• Permanent contraception may be considered as one option along the continuum of care for menstrual and fertility management in children, adolescents, and young adults with intellectual developmental disorder if reversible methods have been attempted and found unsatisfactory to meet the needs of the patient and, thus, if permanent interventions are determined to be in the best interest of the patient. Such a determination often requires careful discussion with the surrogate decision-maker over a period of time and assessing patient preferences, when appropriate. Discussions may also include additional family members, caregivers, and members of their health care and social support teams to assess best interests.

• Providers should be aware that although the current restrictions regarding sterilization were put in place to protect persons with disabilities, they may also deny these individuals access to safe and appropriate medical care.

• Providers should work with individuals with disabilities, their families, and other members of their health care and social support teams to distinguish between the need for education on emerging sexuality, difficulties supporting menstrual hygiene, concerns regarding the risk of sexual abuse, the risk of sexually transmitted infections, and the need to control fertility, which may all present as a request for permanent contraception.

• Medical decision-making should be patient centered, with consideration of what is in the best interest of the individual, within the context of the person’s family and social support system.

• If long-term control of fertility is desired, the risks and benefits of long-acting reversible contraception versus permanent contraception should be discussed with the surrogate decision-maker, with a preference for the lowest-risk and least-restrictive option whenever possible.

• Providers should be aware of both the ethics standards in place at their local hospital or clinic and the legal jurisdiction within their state of practice and should help guide individuals and families through the medical, legal, and ethical issues surrounding requests for permanent contraception for individuals with intellectual developmental disorder. Decisions about permanent contraception should generally follow consultation with other clinicians (psychologist, pediatrician, pediatric subspecialists, primary care physician, and obstetrician-gynecologist and/or urologist), an ethics committee, and an appointed patient advocate.

Gina M. Geis, MD, MS, FAAP

Barbara S. Saunders, DO, FAAP

Paula Hillard, MD, FACOG

Naomi Tricot Laventhal, MD, FAAP, Chairperson

Gina M. Geis, MD, MS, FAAP

Deborah Susan Loeff, MD, FAAP

Kelly N. Michelson, MD, MPH, FAAP

Mary Ott, MD, MA, FAAP

Nanette Elster, JD, MPH

Douglas S. Diekema, MD, MPH, FAAP – American Board of Pediatrics

Kavita Arora, MD, MBE, MS – American College of Obstetricians and Gynecologists

Maria McGee, MD, MPH – American Academy of Child and Adolescent Psychiatry

Anjie Emanuel, MPH

Garey Noritz, MD, FAAP, FACP, Chairperson

Rishi Agrawal, MD, MPH, FAAP

Deanna S. Bell, MD, FAAP

Jessica E. A. Foster, MD, MPH, FAAP

Ellen Fremion, MD, FAAP, FACP

Sheryl Frierson, MD, MEd, FAAP

Michelle Melicosta, MD, MPH, MSc, FAAP

Barbara S. Saunders, DO, FAAP

Siddharth Srivastava, MD, FAAP

Jilda Vargus-Adams, MD, MSc, FAAP

Katharine E. Zuckerman, MD, MPH, FAAP

Dennis Z. Kuo, MD, MHS, FAAP, Immediate Past Chairperson

Jeff Brosco, MD, PhD, FAAP – Maternal and Child Health Bureau

Jennifer Walton, MD, FAAP – Section on Developmental and Behavioral Pediatrics

Matthew Sadof, MD, FAAP – Section on Home Care

Allysa Ware, PhD, MSW – Family Voices

Marshalyn Yeargin-Allsopp, MD, FAAP – Centers for Disease Control and Prevention

Alexandra Kuznetsov