Considerations for Provider Organizations in Designing an Assessment Process for People Receiving Services
Il P.A. 101-0506 (IL PA 101-0506) amends the Mental Health and Developmental Disability Code (405 ILCS 5), Section 5/4-211 to require that a person admitted to a developmental disability facility (defined as a disability program, inclusive of day services) and receiving habilitation shall have access to sex education, related resources and treatment planning that supports his or her right to sexual health and healthy sexual practices and to be free from sexual exploitation and abuse. The person receiving habilitation shall be assessed: (1) on whether he or she has decision making capacity to give consent to sexual activity; and (2) for developmentally appropriate sex education materials and resources.
A statewide committee has been established to oversee implementation of the provisions of the amended section of the Code. The committee consists of a wide array of stakeholders including self-advocates, provider organizations, parents/family advocates, state personnel and subject matter experts. Two subcommittees have been established to make recommendations for implementing the new requirements: one focused on sexual education materials and resources and the second focused on process/implementation of the provisions by provider organizations.
The Process Subcommittee is charged with developing direction for provider organizations to consider in designing an assessment process for determining interest/need in addressing issues related to sexual education for people with I/DD in agency services. The subcommittee agreed that rather than developing a single assessment tool or recommending an existing proprietary instrument, we would outline topics/issues for provider organizations to consider in designing or acquiring an assessment tool to meet the needs of their organization and the people they serve.
Sexual activity should be understood as a broad term inclusive of a range of relationships, actions and topics. The assessment process should not focus narrowly or exclusively on whether the person has an interest in and/or capacity to consent to sexual intercourse with a partner. Rather, the person's interest in and understanding of the full spectrum of topics related to sexuality, including but not limited to relationships, rights and responsibilities, sexual knowledge, masturbation, sexual health and safety, legal and illegal activities, risk factors, privacy, etc. should be considered in completing the assessment as well as designing the follow-up action. A person who may not fully understand the act of sexual intercourse and may not be found competent to consent to that activity may still have interest in exploring and/or engaging in a relationship with a partner which could include a variety of activities (hand-holding, kissing, dating) and topics (communication, boundary-setting, personal values). The determination that the person currently lacks the capacity to consent to sexual intercourse should not limit his/her opportunities in other aspects of sexuality.
Capacity to Consent
Recognizing provider organizations' duty to promote the safety and wellbeing of people receiving services, the assessment process should determine whether the person has sufficient understanding of sexual intercourse to make an informed decision about participating in this activity. The "capacity to consent" determination should be based on a robust review of the assessment results, input from the person and family (if desired by the person) and others who know the person well. If it is determined the person does not have the capacity to make informed consent to engaging in sexual activity with another adult, the provider organization should assure that specific steps are outlined in the Implementation Strategy to either address specific obstacles to making informed consent if the person wishes to be able to do so, or that protective measures are put in place if warranted to assure the safety and wellbeing of the person and those around him/her.
Provider organizations may want to consider the following strategies as they assess their organizations' current practices related to the requirements of the new law, and what steps may help to achieve full compliance.
- Establish a steering committee to assess current practices, policies and resources and make recommendations for any changes that may be warranted.
- Conduct an environmental scan to capture community resources that may be of assistance in supporting organizational efforts and/or serve as a referral source for specific issues that may arise.
- Review staff training curricula to incorporate content regarding the new law and direction for staff to follow in addressing situations that may arise during the course of assessment/education activities.
- Evaluate existing policies and protocols to assure they provide adequate guidance and convey agency standards. Some specific considerations are highlighted below.
- Conduct staff polls or interviews to evaluate understanding, values and interest in participating in organization activities in this area.
- Agency position on the rights and responsibilities of individuals supported
- Agency responsibilities, services and limitations in the areas of assessment and sexual education
- Role/authority of guardians
- Conflict resolution process
- Clearly defined process for sexuality assessments
- Direction for responding to revelation or suspicion of sexual abuse
- Considerations in determining what staff will be involved in assessment/education activities
- Nature and degree of agency involvement in supporting people relative to interests
- Process for addressing disagreements between individuals supported and guardians
Checklist for Provider Organizations to Consider in Designing a Sexual Education Assessment Protocol
- The assessment process should have basic parameters, but be fluid to account for the individual interests, experience, communication style and other relevant factors.
- Create a policy governing the assessment process including designating authority for oversight, coordination and training related to sexual education activities. Agencies may want to consider adopting an arrangement similar to the designated OIG liaison, wherein responsibility for oversight is assigned to a single person, however, multiple staff may be involved in the process.
- The assessment should address the topics below as appropriate to the person's understanding and circumstances (e.g. if a person has expressed no interest in a sexual/dating relationship he/she would not necessarily be part of a dating skills group):
- Interest in learning about topics and issues related to healthy adult sexual relationships (e.g. if the person has demonstrated interest in a relationship, the assessment may be more in-depth versus a person who expresses little to no interest in a relationship)
- Understanding of typical standards regarding adult relationships (e.g. relationships develop over time, another person can't force you to do something if you don't want to, friendship vs. sexual relationship, etc.)
- Self-protection understanding and skills (e.g. will deflect someone who makes unwanted advances, understands others must provide permission to touch him/her, will alert others if feeling threatened, etc.)
- Understanding of boundaries (e.g. personal space, interpreting cues from others, etc.)
- Sexual practices/behaviors that may be risky and/or harmful to self and/or others (e.g. illegal sexual activities, privacy considerations, unwanted pregnancy, sexually transmitted diseases, knowledge of the consequences of risky choices both legal and personal health consequences)
- Safe masturbation practices (privacy, sanitation, non-harmful)
- Sexual Identity - Including LGBT and other topics related to sexual orientation and identity.
- The assessment process may be completed using a formal tool, either designed by the provider organization or acquired externally, or may be completed through an interview/discussion process.
- In advance of the assessment, review existing medical, psychological and psycho-social assessments to determine if they contain any information that may warrant sexual education training or intervention.
- Review other clinical documentation to determine if there is evidence that any of the above and/or other related issues are present for the person
- Considerations for staff who will conduct the assessment process should include:
- The person is open and willing to engage in the process with a commitment to best interest of each individual person, rather than an organizational or personal bias toward the outcome
- While trained and credentialed clinical staff (e.g. RN, QIDP) may be selected to complete the assessment process, there is no specific requirement for this role. Experienced non-credentialed staff with appropriate training and consideration given to the above item, may also be considered to fulfill this role.
- The assessment process yields sufficient person-specific information to determine whether he/she has an interest or need for sexual education, related resources and/or "treatment planning" regarding healthy sexual practices and freedom from sexual exploitation and abuse (both freedom from others and protection of others).
- Provide direction for above engagement that is mindful of the sensitivity of the topic and the possible reluctance of the person to want to discuss the topic in front of others. If the person indicates either before or during the assessment through words or action that he/she does not want to engage in conversation or other communication regarding the topic, the reaction should be documented (e.g. QIDP Monthly Summary) and the assessment process should be terminated and reintroduced at a different time but not limited to only at that time and/or at the request of the person.
Provider Post-Assessment Activities
If the person expresses an interest in learning more about specific topics related to sexual education or the issue more generically and/or if the assessment results indicate the person may be at risk of exploitation by others, or exploiting others, the provider organization should address specific steps to be taken in these areas as part of the overall Implementation Strategy designed for the person. Depending upon the person, Implementation Strategy steps may include formal education, group support, clinical intervention, staff supervision, targeted opportunities to meet and engage with others, team meeting, etc. Should a training curriculum be used as part of the overall strategy it is important to assure that the content remains relevant to the person's learning curve and interests.
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