Going Upstream: How to Get Legislation Passed in Support of Sexuality Education for Individuals with I/DD
Workshop Summary
Most states have no law requiring that people with intellectual and developmental disabilities receive sexuality education. The outcomes are not a mystery: high rates of sexual abuse, unplanned pregnancy, criminal charges for behaviors no one taught them were wrong, and profound loneliness. Two states changed that — Illinois in 2019, Virginia in 2020. This page tells you how they did it, and what advocates in other states can take from their stories.
The Policy Gap Around Sexuality Education for People with I/DD
As of 2021, only a handful of states — Illinois, Virginia, Colorado, Washington, and California — require that sexuality education be accessible to people with disabilities. Most states have no such requirement. In those states, whether a person with I/DD receives any sexuality education depends entirely on the individual provider, program, teacher, or family. Most of the time, they receive nothing.
The consequences are well documented.
People with I/DD experience sexual abuse at dramatically higher rates than the general population.
They are charged with crimes — public masturbation, inappropriate touching, misuse of the internet — for behaviors they were never taught were wrong.
They experience high rates of STIs and unplanned pregnancy.
They face staggering rates of loneliness and isolation, in part because no one ever taught them how to navigate relationships.
“Going upstream” is a public health concept: instead of addressing the damage after it happens, you address the root cause before it does. In the case of sexuality education for people with I/DD, the root cause is a policy gap. And closing that gap requires legislation.
The Illinois Story: How HB 3299 Passed
The Illinois Guardianship and Advocacy Commission did not set out to pass landmark legislation. The legislation stemmed from their casework.
The Commission’s Human Rights Authority — a program that investigates disability rights violations in group homes, day programs, hospitals, and state facilities — was seeing the same pattern repeat.
Group homes restricting residents from any intimate behavior, including holding hands.
One facility has a written policy forbidding intimate behavior and requiring marriage before physical contact, and stipulating that married couples would have to move out.
An individual facing criminal charges because his partner’s consent capacity was in question.
A special education student disciplined for inappropriate touching, who had never received sex education in any setting.
Each time the Commission tried to resolve these cases directly with providers, it hit the same wall: providers were afraid to move into sexuality education without explicit legal backing. The state licensing body had tried and met the same resistance. “It was at that point,” says Teresa Parks, Deputy Director of the Commission, “we felt our only option was to pursue public policy in the form of legislation.”
The Legislative Journey
The Commission drafted legislation and found sponsors on both the House and Senate sides — both Commission members at the time. When the bill was first presented in the House’s Special Needs subcommittee, a legislator with a large constituency of parent guardians connected to a state-operated facility pushed back hard. The subcommittee chair asked the Commission to return to stakeholders and come back.
The Commission held meetings across the state: Chicago, Springfield, and Marion — the center of the opposition. The meetings drew self-advocates, parent guardians, service providers, and advocacy organizations. Most attendees were proponents. Opponents were primarily parent guardians, some of whom simply did not want their adult children to have access to sexuality education, and others who were legitimately concerned about the guardian’s legal role in the process.
The Commission revised the legislation to address guardian concerns directly, adding language specifying that guardian decision-making must conform to the standards of the Illinois Probate Act. This act requires substituted judgment first (the individual’s own stated preferences) and best interest decisions only when preferences cannot be determined. The opposition continued, but the Commission could now show legislators it had attempted to negotiate.
The bill passed both chambers and was signed by the governor in 2019, taking effect in January 2020.
What Illinois Public Act 101-0506 Requires
The law amended Illinois’s Mental Health and Developmental Disabilities Code. It applies to adults with I/DD receiving habilitation in community integrated living arrangements (CILAs), intermediate care facilities (ICFDDs), day programs, and state-operated facilities. It requires that each person in those settings be assessed for consent capacity and for developmentally appropriate sexuality education materials, and that they have access to education, resources, and treatment planning supporting both their right to sexual health and their right to be free from exploitation and abuse. Final determinations are made by a treatment team that includes the individual, relevant professionals, and — if applicable — their guardian.
Implementation
After passage, the Commission partnered with the Illinois Department of Human Services on an oversight work group with three subcommittees: curricula review, policy and provider guidance, and train-the-trainer modules for staff. All committees included people with disabilities, family members, service providers, advocacy organizations, and representatives of licensing bodies.
The Illinois Self-Advocacy Alliance was central to every phase — stakeholder meetings, spreading the word, testimony, and implementation — and maintains a dedicated webpage on the legislation. The Illinois Council on Developmental Disabilities provided emergency grant funding to accelerate the train-the-trainer series, which is available to anyone on the Illinois Department of Human Services website.
Diana Braun: The Testimony That Moved the Vote
Diana Braun is a self-advocate and member of the Illinois Council on Developmental Disabilities who testified before the Illinois House in support of HB 3299. Teresa Parks, who presented this workshop alongside her, says the timing was unmistakable: “It was immediately after she gave her testimony that the legislators took the first vote on the legislation, and it passed.”
This is Diana’s testimony, in her own words:
“I lived on my own in Springfield, Illinois. Before that, I had to live with two, three, four families. Before that, in a graded care facility. Before that, in a nursing home. And before that, in state institution. I used to live in District State School in Dixon, Illinois, before it was closed down. That is why I am here today.
“I did not get sex education in school. I did not get any sex education from the staff at any place I lived in. I do not recall anywhere I lived would ever get sex education either. And I have lived with hundreds of other people during that time.
“For me, it is important education for all people with disabilities that focus on safety. Because what I am living in a future, it was not safe. I want people to know how to show others when it is okay and not okay to be touched.
“When I was 12 years old, I lived in a District State School. A fellow resident who was much older than me pulled me into the room and tried to rape me. I knew what he was doing was wrong. I managed to escape. Not everyone is just looking at me.
“I think it is important for people like me to reference them so they know what to do. I also think it is important for people like the guy who attacked me to know what is right and wrong. The guy who attacked me has severe disability. I wonder if he had someone tell him what is right and wrong about sex if he would have attacked me. I wonder if his parents or guardians thought that type of education was important. I wonder if staff that was helping him wanted to teach him, but they did not know how. I would never know. But maybe the world can learn from my experience and together we can keep things like this from happening to other people.”
— Diana Braun, self-advocate,
Diana closed this workshop with a message to people with disabilities across the country: “I don’t want the people to get hurt if they don’t know how to do it.”
The Virginia Story: How HB 134 Passed
Brian Kelmar is a retired Navy Commander, a marathon runner, and the father of a son with autism who was caught up in the criminal justice system for behaviors he had never been taught were wrong. When Brian shared his story with The Arc of the United States, they hosted a webinar. Their typical attendance was 100 to 150 people. More than a thousand showed up and crashed the network. “It was clear to us that this is a big issue,” Brian says, “and we need to address it.” He co-founded Legal Reform for Intellectually and Developmentally Disabled (LRIDD), a national nonprofit based in Richmond, Virginia.
What the Research Showed
LRIDD commissioned research through Virginia Commonwealth University. The findings: 22% of adolescent males with I/DD had not learned anything about sexuality. People with I/DD were both being victimized and unintentionally offending, because the education that might have prevented both had never happened. Students with I/DD were mainstreamed into schools alongside neurotypical peers but were not receiving the sexuality education those peers had access to, even in its limited form. By the time they left high school, they had no framework for sexual behavior, consent, or appropriate online conduct.
A developmental reality compounded the risk. A person with I/DD may have the physical development of a 19-year-old alongside the social understanding of a 12-year-old — or younger. Without education, the gap between biological reality and social knowledge creates danger in both directions: victimization and unintentional offending.
The Bill and How It Passed
Brian introduced HB 134 in 2019. It did not pass — not because of opposition, but because the Virginia Department of Education, seeing it had strong support, moved proactively. They hired Virginia Commonwealth University to research implementation and then called Brian in to review what they had developed. “I thought it was kind of interesting,” Brian says, “because here I was just a parent, and they were going around the room with the superintendent and all the lead people in the Department of Education saying, ‘Brian, are you okay with this?'”
The revised bill passed the Virginia Senate 40-0 and the House 97-3. “We tell people it’s not a Republican or Democrat thing,” Brian says. “It’s a disability thing. And people seem to get that.”
What Virginia HB 134 Requires
The law requires age-appropriate, developmentally appropriate sexuality education — called “family life education” in Virginia law — for students with I/DD from kindergarten through grade 12, integrated into each student’s Individual Education Plan (IEP). IEP integration means the education is reviewed four times per year, built on what has already been learned, and treated as an ongoing instructional goal rather than a single event. Coverage begins early — what is public and private, appropriate touch, body autonomy — and builds through adolescence toward consent, relationships, and online conduct.
One tactical note Brian emphasizes: in Virginia, the word “sex” was never used publicly. “We call it family life education, or family health education. The people who implement it know exactly what it is. But just for political purposes, we reference family life education.” Katherine McLaughlin echoes the same lesson from agency work: “healthy relationship education” gets less reflexive resistance than “sexuality education” — same curriculum, different frame.
How to Advocate for Sexuality Education Legislation in Your State
Both Teresa Parks and Brian Kelmar drew explicit lessons from their campaigns. What follows comes directly from their experience.
Lead with stories, not statistics
Both campaigns found that data alone did not move legislators. Stories did — especially from people directly affected. “Statistics are just humans with tears dried off,” one workshop participant put it. Diana Braun’s testimony moved the Illinois House to vote immediately after she spoke. Brian Kelmar’s LRIDD-trained parents to condense their stories from forty pages to two pages to one paragraph — because in a committee hearing, you may have three minutes, sometimes thirty seconds. “It’s not just business,” Brian says. “It’s personal. And that’s what makes the difference.” Use statistics to frame the scale of the problem. Use stories to make it impossible to look away.
Hold stakeholder meetings before you introduce the bill
The Illinois team held regional meetings — including in the area of strongest opposition — before reintroducing the legislation. The purpose was twofold: identify who the opponents are and what they are afraid of, and build a record showing you engaged them. “We could at least tell legislators that we attempted to work with the opposition,” Teresa Parks says. Even if the opposition does not move, legislators need to see that you tried. Stakeholder meetings are also where self-advocate stories surface — the ones that later become the most powerful material in hearings.
Engage self-advocates from the beginning
In Illinois, the Self-Advocacy Alliance brought self-advocates to every stakeholder meeting, provided testimony, and was embedded on implementation committees. In Virginia, Brian’s son met personally with the legislator who sponsored the bill. “I told it,” Brian says, “but it means a lot more when it’s coming from the person who is affected.” Self-advocates are not a courtesy addition to the campaign. They are often the most persuasive voice in the room.
Find a legislative champion with disability experience
Both campaigns benefited from having a legislator who already had personal or professional experience with disability. In Illinois, a commissioner who was also a legislator served as House sponsor. In Virginia, the bill’s chief patron was a physician who regularly attended disability events and understood the issue without needing to be educated from scratch. “Not a lot of legislators know a lot about people with disabilities,” Teresa Parks says. Champions who do can also educate other legislators, which matters when you’re navigating a committee system. Identify these people early and cultivate those relationships before you need a vote.
Build fact sheets that evolve with the opposition
The Illinois team created fact sheets drawing on data from sexual assault centers, their own case stories, and abuse rate statistics. They updated those fact sheets continuously as new objections emerged. They also created plain-language versions so self-advocates could access and share the material independently. The goal was to anticipate what the opposition would say next and have an answer ready before the next hearing.
Watch your language
In Virginia, the word “sex” was never used in public-facing materials. “Family life education” and “family health education” are the statutory terms in Virginia law, and Brian’s team used them throughout. Knowing your political environment and framing accordingly is not a compromise — it is a strategy. “Healthy relationship education” gets less resistance than “sexuality education” even when the curriculum is identical. Get in the door first.
Start early in the legislative cycle
Virginia’s session runs January through March. Brian’s team began building relationships and drafting language the previous May. By November 30th, when the bill had to be submitted, they had months of outreach and refinement behind them. “The squeaky wheel gets the grease,” Brian says. “You have to be the one putting the grease on that squeaky wheel and pushing forward.” Last-minute advocacy gets last-minute results.
Use existing legislation as your starting point
Brian’s direct advice to advocates in other states: do not start from scratch. LRIDD has members in every state and is actively supporting replication of the Virginia model. The full texts of both the Illinois and Virginia laws are available for download on this page. Use them as frameworks and adapt to your state’s specific statutory language and political context.
Watch the Workshop
Download Resources
The following resources are available as free downloads:
Workshop Slides (PDF) — The full presentation slide deck, including the SIECUS state legislation map, VCU research data, and legislative summaries for Illinois and Virginia.
Virginia HB 134 — Full Text (PDF) — The complete text of Virginia’s law requiring age-appropriate sexuality education for students with I/DD as part of their IEP, K through 12.
Guidelines for Consideration (DOC) — Implementation guidance developed through the Illinois legislative process, useful for service providers and agencies beginning their own planning.
Considerations Form (DOC) — A practical planning tool from the Illinois implementation process for service providers beginning to assess sexuality education needs.
Workshop Chat Transcript (TXT) — The full participant chat from the live session, including questions, discussion, and resources shared in real time.
Going Deeper
Getting legislation passed is one part of the work. Building support and implementing sexuality education once you have a mandate — or in the absence of one — is another. These Elevatus Training workshops address both:
Katherine McLaughlin, M.Ed., AASECT Certified Sexuality Educator, is the Founder, CEO, and Lead Trainer for Elevatus Training. She has been a sexuality educator and trainer for over 30 years. As a national expert on sexuality and intellectual and developmental disabilities, she trains professionals and parents, as well as people with I/DD, to become sexual self-advocates and peer sexuality educators.
Brian Kelmar is the co-founder and Chairman of Legal Reform for Intellectually and Developmentally Disabled (LRIDD), a parent advocacy group. LRIDD was created to help other parents who are going through similar situations and to advocate for creating change in the criminal justice system for people with intellectual and developmental disabilities. He is a retired Navy Commander and carrier aviator. He has an undergraduate degree from Penn State, an MBA from Troy State, and executive education from Harvard Business School. He lives with his wife in Richmond, VA, and is a proud parent of three boys. He enjoys running marathons.
Teresa Parks, MSW, NCG, is the Deputy Director of the Illinois Guardianship and Advocacy Commission as well as Director of the Commission’s Human Rights Authority. Parks holds a Master’s Degree in Social Work from the University of Illinois in Champaign/Urbana and is a National Certified Guardian through the Center for Guardianship Certification. Parks is also a graduate of Illinois’ Partners in Policy Making Program and the Institute of Special Education Advocacy through William and Mary Law School. Prior to working for the Commission, Parks was a nursing home ombudsman and program director for a community mental health agency. Currently, Parks serves on the board and education committee of the Illinois Guardianship Association, is an appointed member of the Illinois Council on Developmental Disabilities, and is a trustee for the Center for Guardianship Certification. She has also served on various local and regional disability-related boards and committees. Parks is the parent of two adult children, including a son with disabilities.
Diana Braun, Self-Advocate — Diana Braun is a self-advocate and disability rights leader who spent her early years in Illinois state institutions, including the Dixon Developmental Center, and has devoted her life to ending institutionalization. She is a former president of People First of Illinois, a longtime member of the Illinois Council on Developmental Disabilities, and the subject of the award-winning PBS documentary Body & Soul: Diana & Kathy. She has testified before the Illinois legislature and the U.S. Congress, and has represented the United States Department of State at international forums on disability inclusion. In August 2025, Governor JB Pritzker declared August 28 “Diana Braun Day” in Illinois.
