The Stanford Intellectual and Developmental Disabilities Law and Policy Project released a report focused on the Capacity to Consent to Sexual Activity among Those with Developmental Disabilities (link takes you to the page where you can freely download the report). The report provides historical background, the current state of the field, and capacity definitions. There are no federal statutes defining sexual assault and consent – each state has its own statutes. The report highlights six standards for consent used in various states: morality, nature and the consequences, totality of the circumstances, nature of the conduct, judgement, and evidence of disability. The Rape, Abuse & Incest National Network (RAINN) provides easy access to the laws in each state (link takes you to their state law finder). As wording in state statutes can be vague, judicial decisions help provide guidance for interpreting the statutes. The report from Stanford Intellectual and Developmental Disabilities Law and Policy Project provides summaries of judicial decision for each state. This report is an important tool for both victim rights and sexual autonomy advocates.
I know many of you are interested in writing a sexuality policy for your agency to help guide decisions around teaching human sexuality. Here is an example I thought might be helpful from Florida’s disability council.
What I really like about this policy is that they organized it around student responsibilities and educator responsibilities. I think this is a nice model for conceptualizing a sexuality policy. Below, I’ve highlighted the “Quick Reference Fact Sheet on Choice and Education Instruction” which is part of the policy.
ABC just did an article about teaching human sexuality to students with intellectual disability. They focus on a New York school that has incorporated teaching sexuality into their mission. One of my favorite lines from the article is that “Sex ed is not a goal, but a process.” They mention in the article that New York City schools mandate sexuality education and I just wanted to comment on this, based on my experience in Illinois.
Although there is not specific information that addresses the willingness of school administrations to offer comprehensive sexuality education to individuals with ASD, there is information available for offering this type of education in general. As part of the Affordable Health Care Act federal funding was opened up for comprehensive sexuality education called PREP- Personal Responsibility Education Program as well as Title V- abstinence only education meaning that states get to choose the type of sexuality education offered and may offer both (SIECUS, n.d.). For fiscal year 2010, 43 states applied for PREP funding which means their sexuality education must cover abstinence, contraception use, healthy relationships, adolescent development, finical responsibility, educational and career success, and healthy life. Until PREP funding was aproved funding was only available for Title V abstinence only education.
Even if comprehensive sexuality education is being offered in the schools, that does not mean it is being offered to individuals with disabilities. Under the Individuals with Disabilities Education Act, students with Individual Education Plans have access to adapted general education curriculum. At this point, my understanding is that, in Illinois this means a student can participate in a general education sexuality class room unsupported, with an aide, or opt out. If the student (or more accurately, the student’s guardian), opts out, then the child’s special educator is required to adapt the curriculum with parental permission. There are no standards for what that adaptation must cover. Teachers may be working with professionally developed curriculum for individuals with disabilities, independently adapting a general education curriculum, or may be creating their own curriculum from scratch. Due to the diverse needs and strengths among individuals with students with disabilities there may be great variability in how long it takes to cover various topics, to what depth topics can be covered, and what further adaptations may be needed.
When you think about implementing sexuality education, it is important to think of what your agency is already doing because it is often easier to build on something than to start from scratch.
I’m going to present a model for one approach for implementing sexuality education at the agency level. This isn’t the only way to do this, but rather a suggestion of one path that I have found to be successful. Your agency may already have completed some phases or find some phases to be unnecessary.
Phase I: Start a committee- bring together a few people who are interested in topics of human sexuality and willing to do some of this work.
Phase II: Draft a sexuality policy- this will serve as a foundation the committee’s path.
Phase III: Invest in curriculum and teaching materials- you don’t need much to start out with, but I think it’s helpful to have something and you can always add later. Having said that, I’ve never come across anything that didn’t need some adaptation.
Phase IV: Start thinking about who you want to target and how- do you want to do small groups or individual education? Who is going actually implement the education and what support do they need (training, regular meetings to process how it’s going)? What will your process be for getting individuals receiving services involved? (I’ve attached a sample Referral Form).
Phase V: Start Implementing!
Phase VI: Expand and Revise- self advocates, expanding curriculum, increasing training for all employees…there’s so many interesting and fun places you can go.
You may be saying to yourself, “this is great, but I’m not really in a position to implement agency wide change where I work”. Here are some questions to ask yourself in regards to what you can do at a personal level.
- Where could I fit in with what my agency is already doing?
- How can I reinforce and incorporate human sexuality concepts into my everyday interactions?
- How can I incorporate human sexuality concepts into programing?
- What can I do to advocate for human sexuality education?
What does supporting people with disabilities with BEING sexuality educators?
It’s all about self-advocacy!
According to SDC (UIC’s Institute on Disability and Human Development and their Sexuality and Disability Consortium (SDC), “Sexual Self-Advocacy means: People with disabilities taking control of their own sexuality by making their own decisions and speaking up for themselves and others about sexuality.”
As sexuality educators, individuals with disabilities can be…
- Safe people for their friends to talk to
- Knowledgeable sources of information
- Leaders and co-leaders in educational sessions
- Models of healthy sexual relationships
- Advocates for raising awareness about sexuality topics
- Fill in the blank ____________
This is a great webinar to learn more about how to advance sexual self-advocacy for people with disabilities.
Another great resource for learning more about sexual self-advocacy is The Green Mountain Self-Advocates. They have developed materials for self-advocates interested in teach human sexuality (as well as many other topics).
SDC recommends the Developmental Disabilities and Sexuality Curriculum which has a self-advocacy component built in.
I found this great (free) book online. Although it targets parents, caregivers, and professionals who work with individuals who are deaf-blind and significantly developmentally delayed- you may find useful info even if this not your target population. Kate Moss & Robbie Blaha’s overall approach to education considers four basic tools for instruction: routines, units, teachable moments, and behavior plans. Chapters include …