Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities
Creating and Adapting Comprehensive Identity Education
Authors Kelley Wilds and Sarah Rowley speak at a recent ROAR program session at Washington State University.
Following high school, students with intellectual and developmental disabilities (IDD) can make many different decisions for their future. Inclusive postsecondary education (IPSE) programs are one type of higher education option where students can explore career interests and enhance independent living skills. According to Think College, there are currently more than 300 IPSE programs in the United States, with more than 110 programs offering housing or on-campus living experiences. The Washington State University Responsibility Opportunity Advocacy and Respect (WSU ROAR) program is a residential, 2-to-4-year IPSE program for students with IDD. Students in our program live on campus in either residence halls or apartments, audit WSU classes based on their career interests, and attend campus events and other social opportunities that foster an inclusive campus environment. ROAR strives to empower students across all areas of academics, employment, and independent living to cultivate a safe and healthy campus experience that embraces social interactions and facilitates all types of relationships. From academic and employment settings to new social opportunities, our goal is for WSU ROAR students to embrace the traditional college experience of being a WSU Cougar!
In addition to auditing university classes, ROAR students take ROAR classes that prepare them for a successful college experience. These classes focus on enhancing digital literacy skills, preparing for competitive integrated employment, and advancing independent living knowledge and skills. The Independent Living class includes many topics, such as cleaning, cooking, budgeting, and sexuality education, that are all essential for any student to understand when living on their own for the first time. Most WSU ROAR students are between the ages of 18 and 26 years old and are entering higher education at a time when they are not only exploring their independence and career interests, but also their identity. While having a basic understanding of independent living skills is extremely important to promote autonomy, opportunities for relationship development and intimacy exploration are not only typical to the college experience but are also basic human rights. Like all people, students with IDD have the right to develop sexual relationships, make decisions related to family planning, and participate in sexuality education. According to the 2013 position statement on sexuality from the American Association on Intellectual and Developmental Disabilities (AAIDD), people with disabilities can make choices regarding their sexuality and relationships regardless of guardianship, and the presence of a disability does not justify loss of these rights .
In 2020, I joined the WSU ROAR staff and was assigned to develop and teach the Independent Living class. My previous work experience in public health education and my research focus in sexuality education ignited my interest in creating the materials and teaching the class. WSU ROAR values fostering a safe and self-determined environment for their students, and this involves allowing an appropriate level of risk-taking. The concept of dignity of risk , first described by Robert Perske in 1972, stresses the importance of people with disabilities having the same opportunities to make decisions and experience risk as people without disabilities. To develop the sexuality education portion of the class, I used the dignity of risk model described in 2021 by Jennifer Bumble and colleagues in Inclusive Practices. It was the framework that guided my approach to teaching sexuality and dating topics to ROAR students. Choosing to be in a sexual relationship or engaging in sexual intercourse involves some level of risk-taking (i.e., getting a sexually transmitted infection, experiencing sexual assault, becoming pregnant, or navigating rejection). Risk-taking is a normal part of adulthood; however, risky behaviors do not always have to result in negative consequences. While it is extremely important to learn about consent, contraception, and abstinence, providing a student with comprehensive and sex-positive programming can enable them to make self-determined decisions based on their own values so that the student can feel empowered to make decisions about their relationships and sexuality.
In addition to dignity of risk concepts serving as the guiding foundation of sexuality and dating planning for the Independent Living class, ensuring the materials for the class were both comprehensive and inclusive was extremely important. Comprehensive sexuality education (CSE) includes a wide variety of topic areas that teach students the knowledge, skills, attitudes, and values needed to enjoy their sexuality; however, the Guttmacher Institute reported in 2017 that CSE is often not inclusive to LGBTQ+ populations and people with disabilities . Sexuality curricula for students with IDD are also typically heteronormative and focus on the negative outcomes of sexuality interactions, like STIs or HIV, rather than emphasizing the positives of intimacy and the skills necessary for dating as determined by Giorgia Sala and colleagues in 2019. Even if some students with IDD receive sexuality education in school, it may be difficult to standardize the sexual knowledge they have as they enter an IPSE program. As a result, the reality of creating and adapting CSE materials for college students in the ROAR program was a challenge I was ready to tackle.
Although it is not a requirement, about 60% of IPSE programs deliver sexuality education programming; however, support is also often provided reactively, as Chelsea VanHorn Stinnett and colleagues found in 2021. My goal was to use a dedicated sexuality education curriculum specific to students with IDD that was research-informed and comprehensive to proactively teach these topics in the ROAR Independent Living class. The Elevatus Training curriculum was chosen as the best fit for our program to help standardize student learning expectations and to be a sustainable resource for future WSU ROAR staff teaching the course. In addition to using Elevatus Training, I also created lesson plans and used free, online resources to supplement teaching sexuality topics so that the information was relevant to the college experience and followed the Universal Design for Learning Guidelines by CAST. A few of my favorite resources include AMAZE , Sex Etc. , and Ask Roo by Planned Parenthood. AMAZE and Sex Etc. include helpful videos to supplement certain sexuality education topics. For example, I found that topics and terminologies related to gender identity and expression topics required multiple means of representation through AMAZE videos for optimal learning and understanding. In addition, Sex Etc. includes a Communication Tool where students can explore different conversation topics around coming out, being an ally, STI testing, sex, and pregnancy to practice these often-complex conversations. Incorporating the use of free, online resources is also helpful because students can continue to explore these topics outside of the classroom, using medically accurate and safe sources for information. Ask Roo by Planned Parenthood is an excellent resource that students can use both inside and outside the classroom where they can ask questions through different prompts suggested by the program. To better structure my lesson plans when using supplemental resources, I also used the National Sex Education Standards (NSES) from SIECUS to organize each resource by NSES topic areas and relevant learning standards.
One challenge in a college program is teaching information on topics that are not typically included in sexuality education curricula for people with IDD but are relevant to the college experience. Information on alcohol and drug use and how they relate to consent and personal safety are usually not included in CSE curricula for people with IDD, according to the Sala review in Sexuality and Disability . In addition, following a pandemic, technology has proven to be necessary in connecting with others. While topics addressing how to be safe online and on social media are specific learning outcomes in sexuality education for people with IDD, information on navigating online dating is not. Meeting potential partners or new friends online is a natural way that I have observed many ROAR students make connections while they are living in a new city. Navigating online dating safety and understanding red flags are crucial to successfully making safe connections with others. While this gap in information around alcohol, drug-use, and online dating exists, my goal is to focus these lessons on students’ personal values. The WSU ROAR sexuality curriculum aims to support students in developing their sexual self-advocacy skills. Teaching students to express boundaries is imperative for safety, and I also believe it is equally important to encourage students to affirm their consent and understand how to say “yes” when it is based on their personal values and interests.