NADD U.S. Policy Update (from the NADD Bulletin Volume IX Number 5)

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The need for a clear understanding of an individual's right to sexual expression

Paul A. H. Partridge, Ph.D. and William R. Bonsal, LCSW-R

US Public Policy Update

A challenging area for service providers is how to respond to issues of sexual expression among individuals with intellectual disabilities. While much has been written on this topic, there is often disagreement and legitimate concern about the extent to which an individual's sexual expression should or could be supported given that their disability may affect their ability to consent to sexual activity.

Agency policies to address the issue of sexuality and sexual expression are needed and help to avoid two potential areas in which an individual's rights may be violated. First there needs to be sensitivity to the rights of the individual to engage in consensual sexual expression and choice. The second potential rights issue involves the necessity to minimize the risk of harm or exploitation, particularly among individuals who are not capable of consenting.

From an administrative standpoint, the presence of a clear and concise policy helps to set the tone, expectations, and agency philosophy regarding relationships, intimacy, and sexual behavior. When challenging or delicate situations occur regarding sexuality, if the agency has articulated fundamental concepts and direction in a sexuality policy, it serves as a convenient and consistent starting place to address issues. It also provides education and guidance to staff regarding individuals' sexual rights, responsibilities, and any limitations on sexual expression as defined by law, the person's ability to consent, or agency policy. The simple presence of a sexuality policy itself is likely to convey that this issue is one the agency will handle responsibly.

From an employee standpoint, the presence of a sexuality policy may provide a philosophical foundation and guidance with regard to a topic that the employee may have little information about or, alternatively, preconceived attitudes that may or may not be consistent with the agency philosophy. The policy may also serve to raise awareness among the staff of the significant vulnerability of the ID population for sexual abuse and the need to protect individuals from harm. In addition, the presence of a policy may provide protection for an individual employee if their response to a specific situation is consistent with that policy.

From the perspective of the individual with disabilities, the presence of a sexuality policy may help to ensure that individual rights are not arbitrarily denied. It also serves to inform the individual (and their families) of how the agency addresses issues related to sexuality. Depending on the individual, this may be an important factor in determining whether they choose to seek services through that agency.

A sexuality policy must necessarily straddle the fence between being overly vague and instituting sexuality "policing" of individual's intimate behaviors. Providing some measure of balance is the key issue here. This includes balancing the needs of the individual and the larger system, balancing the rights of the individual and the wishes of their family/caregivers, and balancing the risks of sexual activity and the responsibility of the agency to try to protect the individual from harm. When developing or revising a policy, balance may be best achieved by ensuring that diverse opinions and perspectives are sought. It is especially important to try to include individuals with Intellectual Disabilities and family members in this process.

In developing a policy, it may be helpful to define sexuality and sexual expression and to recognize that overt sexual expression may or may not be part of an individual's relationships with others. If there are some guiding principles the agency wishes to follow, these should be stated as clearly as possible. Affirming basic rights helps to avoid a punitive or judgmental tone to the policy. Then referring to any relevant state regulations, laws, guidelines, or recommendations would give the policy a footing from which to develop.

Specifically, the policy may want to touch on a number of different areas. These could include (but are not limited to) issues of privacy, consent, education, and protection from abuse or exploitation.

The issue of privacy of individuals can be a difficult issue to negotiate in institutional and community settings, but is one that is critically important to address in order to protect the rights of the individual and to help avoid inappropriate public conduct. Too often a private-behavior-in-public problem can be traced back to a lack of any truly private space in the individual's life.

With regard to consent, the policy may address how the ability to consent to sexual activity will be determined and the circumstances under which that would occur. Will an individual clinician make this determination, will the person's "team" make this decision, will a committee review each case, or will there be a combination of these?

If a determination is made that a consumer may benefit from sexuality education (or if the individual desires it), how will this be provided? Availability of sexuality education tailored to the needs of individuals with ID may be difficult to find. Some possibilities include investing in an educator, training staff to provide sexuality education, or relying on community resources, if available.

Facing the topic of sexuality and persons with intellectual disabilities can be a serious challenge. There are a number of potential barriers and often a lack of consensus among staff, administrators, individuals, and their families. While maximizing independence is a stated goal for many agencies and programs, it is in the area of sexuality that this philosophy may be most tested. A descriptive and inclusive sexuality policy that is congruous with the agency's vision is the place to begin to meet the challenge of how to provide both responsible and respectful support to individuals with regard to their right to sexual expression.

 

Paul Partridge, Ph.D., is a Principal Psychologist with the Capital District DDSO in Schenectady, NY. His e-mail is pahpartridge@nycap.rr.com.