Impact Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities
Sexual Expression for Adults with Disabilities:
The Role of Guardianship
For adults with disabilities, as for other adults, the desire to enter into intimate personal relationships, including sexual relationships, is one of the most profoundly personal rights there is. As The Arc and the American Association on Intellectual and Developmental Disabilities state in their Position Statement on Sexuality, "People with intellectual and/or developmental disabilities, like all people, have inherent sexual rights. These rights must be affirmed, defended, and respected" (The Arc & AAIDD, 2008). That desire is no less important for the many adults with disabilities who are under some form of guardianship. To what extent does or should having a guardian limit an adult's ability to fashion intimate relationships of his or her choosing? The answer for many people with disabilities is that, as a matter of law, guardianship need not limit the adult's right of sexual expression and conduct, but dialogue between the individual and his or her guardian can play a critical role in supporting the individual's decision-making in this area.
Guardianship is a form of legal relationship in which a court appoints an individual (called the guardian or conservator) to protect the person or property of an individual (called the ward or the allegedly incapacitated person). In the U.S., guardianship has always been a creature of state law; there is no one guardianship law nationwide (as there is in other countries), but rather 51 guardianship laws (the 50 states plus the District of Columbia) (Dinerstein, 2006). Nevertheless, there are certain national trends in guardianship law, aided by such influential resources as the Uniform Guardianship and Protective Proceedings Act of 1997, which many states have adopted in one form or another (National Conference of Commissioners on Uniform State Laws, 1997).
Traditionally, guardianship in the U.S. was an all-or-nothing affair within the realm it functioned; that is, a guardian of the person was a general or plenary surrogate decision-maker over almost all aspects of an individual's life, including residential, medical and lifestyle domains, while a guardian of the property would be in control of all financial aspects of the life of the individual with disabilities. Capacity – more usually called competency – was also thought to be all or nothing; one either had legal capacity (or was competent) or one did not (or was not competent), and if one did not, he or she needed a guardian to substitute as a decision-maker. Such a legal regime, in theory, maximized protection of the allegedly incapacitated person but had the distinct disadvantage of undermining the autonomy of the individual. Plenary guardianship was a kind of "civil death" in which the individual lost all rights to make the kinds of decisions that adults typically make in our society. In practice, guardianship could be even worse, in that some guardians (especially for elderly individuals) either ignored their wards or took advantage of them financially or otherwise.
Sexual and intimate relationships were included within the kinds of relationships over which plenary guardians exercised control. Of course, for adults with disabilities in institutions, opportunities to have intimate relations, especially with adults of the opposite sex, historically were extremely limited. However, as more and more individuals have left institutions, or avoided them altogether, and as societal attitudes toward the importance of sexual expression for adults with disabilities have evolved, the balance between sexual expression and protection from abuse and coercion has become both more complicated and more salient.
Today, the landscape of guardianship has changed significantly as a result of exposes in the media, congressional investigations, and developments in the fields of law, developmental disabilities, mental health and gerontology. Many state statutes emphasize that guardianship should not be used unless it is the least restrictive means to protect the interests of the allegedly incapacitated person. Indeed, many policymakers and advocates increasingly argue, in the U.S. and abroad, for supported decision-making rather than the surrogate or substitute decision-making that characterizes guardianship (United Nations, 2006). We now understand capacity to be contextual (decision-dependent as well as individual-dependent) and potentially fluid; a person without capacity in one realm (e.g., health care decision-making) may well have capacity in another (e.g., decision-making about residence), and a person without capacity today can receive training and be exposed to experiences that will enable him or her to have capacity tomorrow (Dinerstein, Herr & O'Sullivan, 1999). Less formal alternatives to guardianship, such as durable powers of attorney and health care proxies, are preferred to guardianship and should be explored and appropriately rejected before turning to guardianship at all. Even if guardianship is appropriate, courts and parties are urged to examine whether alternatives to plenary or general guardianship – such as emergency, temporary or limited guardianship – may provide sufficient protection for the interests of the allegedly incapacitated person while increasing the amount of autonomy and decision-making authority he or she retains.
Limited guardianship, in particular, has much to recommend it, because under limited guardianship arrangements, the only decision-making rights that the person loses are those that a court explicitly identifies in the order appointing the limited guardian. Under a limited guardianship, the lawyer for the allegedly incapacitated person (the adult with a disability) can make sure that the individual retains the right to make decisions about sexual relationships, birth control, and other intimate matters. Even if the right is not explicitly retained for the individual, the lawyer for the individual can insist that the limited guardian not be given authority within this area; the absence of explicit authority for the guardian would mean the individual would be able to make decisions about intimate relationships. States such as California, New York, and Vermont, for example, go further and specifically recognize in their statutes or regulations that the incapacitated person retains decision-making rights regarding sexual and social relationships unless a court orders otherwise (and sometimes not even then).
What if the adult has a general or plenary guardian (because notwithstanding the preference for limited guardianships, many potential guardians still seek, and obtain, plenary guardianships) – is the adult unable to make decisions in the area of intimate relations? Even in this situation, the adult with a disability retains important rights. Because of the highly personal nature of the right of intimate association, many argue that the allegedly incapacitated person must retain the right to make decisions regarding, for example, whether to use birth control and what method (Field & Sanchez, 1999). The influential National Guardianship Association Standards of Practice (National Guardianship Association, 2007) provide, in Standard 10-II.A., Sexual Expression, that, "The guardian shall acknowledge the ward's right to interpersonal relationships and sexual expression. The guardian must take steps to ensure that a ward's sexual expression is consensual, that the ward is not victimized, and that an environment conducive to this expression in privacy is provided." Standard 10-II.E. goes further in requiring that the guardian "shall protect the rights of the ward with regard to sexual expression." Even in situations in which the guardian makes a specific decision about the allegedly incapacitated person's sexual relationships, under general principles of guardianship law the guardian is supposed to use the standard of substitute judgment – that is, the guardian should make the decision that he or she believes the incapacitated person would make if he or she had the capacity to make it – rather than a best interests standard (what the guardian thinks is best for the incapacitated person) or a standard based on what the guardian would choose for him or herself. This guardianship best practice is especially important given the personal nature of the rights involved for the adult with a disability.
Listening to the incapacitated person is especially critical because even if a court determines that the adult with a disability does not have sufficient capacity on his or her own to make the decision involved, the individual will undoubtedly be able to have some opinion about the decision and process some of the relevant information. Even adults with disabilities who cannot communicate verbally can demonstrate through their nonverbal conduct that they want to have a close or even intimate relationship with another person, for example, by going into a bedroom together to seek privacy.
Ultimately, the key question is whether the adult with a disability can make an informed decision, or give informed consent, to the relationship or activity being contemplated. Informed consent requires capacity to make the decision; knowledge about the decision; and absence of coercion (or voluntariness) (Dinerstein, et al., 1999). For some kinds of romantic relationships, like a hand-holding relationship, the level of risk is so low that relatively little capacity or knowledge is needed, and a plenary or limited guardian should have no or at most a limited role in decision-making. For more involved relationships, such as one that includes sexual intercourse, concerns about capacity, knowledge, and absence of coercion become more critical (Stavis & Walker-Hirsch, 1999). But those concerns do not mean that it should be the guardian's decision whether the allegedly incapacitated person should have a sexual relationship with another. Rather, whether the guardian is plenary or limited, the better approach is for the guardian and person to discuss such issues as the nature of the relationship, the pros and cons of entering into it, the person's knowledge about the acts involved, the importance of protecting one's bodily integrity and autonomy, and the ability to change one's mind if circumstances change. Whether parent, friend, limited or plenary guardian, or provider of supported decision-making, the person without a disability can play a critical role in helping the adult with a disability to have meaningful relationships that promote happiness while avoiding untoward risk.
Arc of the United States & American Association on Intellectual and Developmental Disabilities. (2008). Position statement on sexuality. Retrieved from http://www.aamr.org/content_154.cfm?navID=31.
Dinerstein, R. D. (2006). Guardianship and its alternatives. In S. Pueschel (Ed.), Adults with Down syndrome (pp. 235–258). Baltimore, MD: Paul H. Brookes Publishing Co.
Dinerstein, R. D., Herr, S. S., & O’Sullivan, J. L. (1999). A guide to consent. Washington, DC: American Association on Mental Retardation [AAIDD].
Field, M. A., & Sanchez, V. A. (1999). Equal treatment for people with mental retardation. Cambridge, MA: Harvard University Press.
National Conference of Commissioners on Uniform State Laws. (1997). Uniform Guardianship and Protective Proceedings Act of 1997. Retrieved from http://www.nccusl.org/nccusl/uniformact_summaries/uniformacts-s-ugappa97.asp.
National Guardianship Association. (2007). Standards of practice. Retrieved from http://www.guardianship.org/pdf/standards.pdf.
Stavis, P. F., & Walker-Hirsch, L. (1999). In Dinerstein (Ed.), A guide to consent (pp. 57–67). Washington, DC: American Association on Mental Retardation.
United Nations. (2006). Article 12. Convention on the Rights of Persons with Disabilities. Retrieved from http://www.un.org/disabilities/default.asp?id=259