Social inclusion is all about the quality of relationships, including friendships and community connectedness. Comprehensive relationship and sexual health education is how we help students with disabilities get there.

The following article was written by Katherine (Kate) Hoy, the Director of Advocacy Services for AHRC New York City. Kate represents hundreds of individual students and families seeking appropriate educational services in New York City and provides workshops and trainings for professionals and client support networks on topics related to students with disabilities. She works with regional councils in the city to advocate for the rights and services students need to become full participants in their communities. Prior to AHRC NYC, Kate worked in academic publishing as a supervising editor for national K-12 reading, math and social studies programs. Kate graduated from Bryn Mawr College and Fordham University’s Graduate School of Social Service; she is a licensed social worker in New York State.

Let me start by saying: I get it. Talking about sex education for students with and without disabilities can be tough for anyone. It’s still tough for me, and I’ve attended a lot more subject-area training and professional development than most. Just ask my colleagues how long it took me to submit this article. (Sorry again!) This should be easy, right? So, here’s the takeaway, upfront: Kids with disabilities need comprehensive sexuality and relationship health education because it’s key to their social inclusion, overall health, and long-term well-being.

Why was that so hard?

It may be in part because so few of us received good, comprehensive sex education when we were growing up since most states don’t offer it. The truth is, as a society, we’re actively bad at this. And while it may not be our fault, it’s definitely our responsibility to fix. The need for comprehensive sex ed is a social justice issue. So, in addition to state legislation requiring it for all students, instruction must be positive, culturally responsive, accessible, specially designed for students with disabilities, youth-informed and evidence-based. The other tough reality is that comprehensive sex education is not required for students in New York State.

Why am I writing about this?

I help students with disabilities ages 3–21 and their caregivers navigate the Individuals with Disabilities Education Act (IDEA). IDEA requires that students with disabilities have access to the same public education programs and general education curriculum offered to their “non-disabled peers.” To oversimplify, if a student with an Individualized Education Program (IEP) isn’t making expected progress in math, reading, or other academic, social emotional, and independent living skills, a district must accommodate, modify, and/or implement evidence-based services and supports as necessary to help the student achieve appropriately challenging goals in targeted areas. While fairly simple in concept, in practice, it’s complicated. In addition to federal and state laws there are regulations, codes, guidelines, policies, and recommendations which inform the application of the law, as well as procedural safeguards designed to protect the rights of parents and students with IEPs.

But what if an essential subject isn’t mandated by New York State Learning Standards? Students with disabilities don’t have a right to education in subject areas that their same-age peers are also not required to receive. Most students I work with are taught in smaller, self-contained classes. That means they spend most or the entirety of their school day separated from general education students. And like it or not, there’s also bias and assumptions about youth with disabilities and sex that are all mixed in too.

What happens when we don’t provide comprehensive sex education?

The adverse impact of the lack of comprehensive sex education in New York State shows up repeatedly in my work as an education advocate for students with intellectual and developmental disabilities. Students I work with have been stalked; they’ve been accused of sexual aggression resulting from behaviors associated with their disability; denied basic information about their sexual and reproductive health; isolated from peers in overly restrictive settings; prevented from attending field trips, and rejected from after-school programs due to poor social skills; denied use of their personal pronouns and gender-affirming standards of care; they’ve been trafficked; exposed on social media; catfished; sexually abused; suspended for bungled attempts to engage with crushes; harassed and threatened at school and home by intimate partners; bullied for their sexual orientation; punished for poor hygiene skills; and disciplined unknown times for “sexually inappropriate behaviors.”

At the same time, the parents, caregivers, and even school staff I work with are often equally baffled by how to respond appropriately and openly invite the sharing of resources and instructional materials from nonprofits and community-based organizations. On more than one occasion when I requested the information and instructional materials a school was using to educate a student about healthy relationship behaviors, I received the Citywide Discipline Code instead. It should be noted that Health Educators—which are the only approved providers of limited topics in sexual health education in New York—are not required to obtain special education certification, which would prepare them to tailor lessons to support all learners. I learned over many years that most school staff and administrators are not able to offer a comprehensive overview of sexuality and relationship health education because they aren’t providing it to students, regardless of obvious need. Too often this gap in understanding and expectations results in poor outcomes for students—for proof, take another look at the list one paragraph above.

Sometimes, what is described as a “challenging” or “target” behavior is actually just pre-pubescent or adolescent human behavior. Youth with and without disabilities are impulsive and may lack self-control at times. The difference is that students who are Black or Latinx are more likely to be punished for it and all students with disabilities are more likely to experience behavioral interventions, more restrictive educational settings, and social isolation as consequences. These compounded and intersecting injustices reflect a system that has not embraced students’ innate need for social connection and self-knowledge or developed the high-quality resources necessary to support safe and positive sexuality and relationship health for students with disabilities.

What do we do? As students, parents, as educators, professionals, advocates or as general NYC community members?

Thankfully, there are some efforts underway that seek to address the cause. We collectively advocate for a guaranteed comprehensive sex education policy for all students including those with disabilities. We support initiatives and work that aligns with human rights for people with disabilities. Policy is a key component to help close both the educational gaps for professionals and the gaps for students when it comes to sex education. In supporting Senate Bill S2584A comprehensive sex education becomes required for all students, including students with disabilities.

Happening Now: Rally with Advocates

Join Planned Parenthood in supporting legislation (Senate Bill S2584A and Assembly Bill A6616) that would require the inclusion of  comprehensive, medically accurate, culturally, age and developmentally appropriate sexuality education in publicly funded K-12 schools statewide. Have your voice heard on Tuesday, March 8th. Register here for this virtual Day of Action 2022.

Despite becoming increasingly integrated into community life, children and adults with intellectual and developmental disabilities still face significant inequities in sexual health care and education. Learn more about these findings in this white paper.

AHRC NYC is one of seven community-based organizations that launched Project SHINE—the Sexual Health Innovation Network for Equitable Education with Youth with Intellectual Disabilities—and aims to close long-standing gaps in equitable access to sexual health for youth with intellectual disabilities. Interested in learning more or getting involved with Project SHINE? Visit the official Project SHINE website for more information.