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Robert D. 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. 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. Nevertheless, there are certain national trends in guardianship law, aided by such influential resources as the Uniform Guardianship and Protective Proceedings Act of , which many states have adopted in one form or another National Conference of Commissioners on Uniform State Laws, Traditionally, guardianship in the U. 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 ificantly 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. 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.

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. 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. 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. 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. 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.

Position statement on sexuality. Dinerstein, R. Guardianship and its alternatives. Pueschel Ed. Baltimore, MD: Paul H. Brookes Publishing Co. A guide to consent. Field, M. Equal treatment for people with mental retardation. Uniform Guardianship and Protective Proceedings Act of National Guardianship Association.

Standards of practice. Stavis, P. In Dinerstein Ed. United Nations. Article Convention on the Rights of Persons with Disabilities. Toggle MENU. ICI Impact. Share this on Twitter. Share this on LinkedIn. Share this via . Print this .

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