Unsafe, Part 4: Pilot program teaches sex ed to Arizonans with disabilities

Unlike many recent high school graduates, Alex Crawford knows exactly what he wants out of life. He wants to go to college to learn how to make movies. He wants to live on his own. And someday, he wants to have a girlfriend.

Instead, he spends his days at the Opportunity Tree, a facility for adults with intellectual and developmental disabilities in Avondale, not far from the home he shares with family. He has a best friend he hangs out with, but no love interests.

On a recent Wednesday afternoon, a dozen or so people gather around a table in an airy open room, decoupaging balloons as part of an art project. Several staff people sit with them. Most exchange friendly banter, some participants wander away to relax on a couch or chat with a friend. Crawford takes a break to talk about his life. He’s tall, with short dark hair and a big smile, despite his worries.

“Ever since I turned 21, it's just, it's just, everything's so different,” he says. “I have autism, and everything goes by pretty fast, and I don't know, I don't know how strong, I don't know. I don't know if I'm strong enough to handle it.”

“I'm still a person. It's just my brain just works in a different way,” Crawford adds. “I'm trying to be like everybody else a little more, you know, like going out places, like being in relationships, getting a job, and um, learn to be more confident. It's what I've been trying to do. But it's hard if you keep, if you just keep doubting yourself.”

Growing up isn’t easy for anyone. But for someone with an intellectual or developmental disability, it can feel impossible.

And sometimes, it can be dangerous.

As part of an Arizona Daily Star/KJZZ investigation, reporters looked at hundreds of reports of sexual abuse taken by the state of Arizona in 2019 and 2020. Most alleged perpetrators were paid staff or family members, but there were also reports of abuse by neighbors, friends, co-workers and romantic interests, including peers with and without disabilities. 

This is no surprise to advocates, who know that more and more adults with conditions like autism and Down syndrome are living, working and — yes — looking for love in the community. That’s exactly why they want people with IDD, as it’s called, to participate in sex education programs.

“A lot of it is not knowing what is healthy and just being curious,” says Raylah Pillar, who runs the program Crawford attends at Opportunity Tree. “And not knowing how to ask for consent or know that you need consent or know that you're even doing something that requires that because nobody's even talked to them about it.”

Sex ed also means learning proper vocabulary for body parts and knowing how to explain when something bad has happened.

Gianna Zola is a manager at Special Olympics Arizona. She has recruited local athletes to participate in a pilot program called “Understanding Me, The Athlete's Guide to Navigating Healthy Relationships.”

Special Olympics Arizona has an entire initiative focused on health. It was not one specific event that sparked the desire for a program about health and relationships.

“It was just throughout the years hearing, you know, Special Olympics is a trusted brand, and having parents call or athletes call and maybe disclose something or ask questions and us not really having somewhere concrete that we could direct them to.”

It’s been rewarding, Zola adds, “being able to create that ourselves and then also build the network and the relationships with different organizations in the community to make sure that the services that they're offering are friendly to people with disabilities.”

The pilot program began in 2019. A half dozen athletes have participated. Zola says their insights have been invaluable. She hopes to launch the official program soon.

“There's so many questions that have come up in focus groups, that have come up in our virtual classes that we've hosted, questions that we wouldn't necessarily think of, but really make us think,” she says. “There's a lot of excitement around learning about boundaries and what it means to have your own boundary and have that boundary protected and what happens if someone crosses that boundary that you've set — whether it's someone you know in a romantic relationship with you or a friendship or even a coworker or boss.”

Among the questions athletes have asked:

“What should I do if my ex won't leave me alone?”

“Is it OK for men to date men?”

“Where do you get a pregnancy test? And then once you get it, how do you take it?”

“Is verbal abuse a part of domestic violence?”

Paul Bennewitz is a participant in the pilot program. He’s 53 and has competed with Special Olympics over the years in track and field, swimming and basketball. He lives with his family in Tempe and describes himself as “mentally challenged.”

Bennewitz doesn’t think it’s fair that students with disabilities are often excluded from sex ed.

“All the regular kids get to take sex education. But it's not offered for people with developmental disabilities.”

Another athlete, Vanessa Robles, wants people to know the difference between healthy and unhealthy relationships. Robles is 41. She has not dated since high school, when she had an experience that wasn’t great. She knows what she’s looking for in a healthy relationship.

“I'm looking for somebody that would, I could joke around with. I'm kind of a jokester in a way, in a playful way. Not like mean bullies and, and looking for who will adore me, being adored and have fun with.”

The lack of sex education for people with IDD isn’t only a problem in Arizona. Nora Baladerian, a California-based psychologist and the founder of the Disability Without Abuse Project, says it’s a challenge everywhere.

“It's a huge issue in that it's very rarely done. And I think that everybody needs sex education, but it should include (a discussion about the difference between) wanted and unwanted sex.”

The Special Olympics program includes that — and more. It’s already working, according to Zola.

“We've heard individuals disclose information that just further proves that there is the need in the community to be able to talk about this and give them access to resources.”

After years of planning, Special Olympics Arizona still is not quite ready to launch its Healthy Bodies program. Because the range of intellectual and developmental disabilities is so broad — every single person is unique — it’s been a challenge to modify curriculum for athletes who communicate in different ways.

And a person who lives in a group home with a lot of support needs might have a different set of needs — and questions — than someone like Alex Crawford, who feels ready to live on his own.

“I kind of wanna live by myself sometime. And then maybe I'll have my girlfriend move in with me,” Crawford says.

He doesn’t have one now, he adds quickly. But someday.

“Maybe I'll have my girlfriend move in with me so that way I won't be alone.”

About the 'Unsafe' series

Until the 1960s, people with intellectual and developmental disabilities – including conditions like autism or Down syndrome – were regularly sent to live in institutions.

In 1999, the U.S. Supreme Court ruled that people with IDD should live in the community whenever possible. Today, fewer than 200 Arizonans with IDD live in an institution. The remaining 45,000 or so who receive caregiving services and other government benefits live on their own, with family or in small settings, like group homes.

But no matter where they live, they are at risk. An investigation by KJZZ and the Arizona Daily Star found that physical and sexual abuse, as well as neglect, can occur anywhere – and often, nothing is done about it. Listen to the series at tucne.ws/unsafe or read it in the Star this week.

Part 1: Blatant abuse: The mother of a woman with profound intellectual and physical disabilities who gave birth after being raped in a state-funded care facility shares her story for the first time.

Part 2: 10,000 incidents: Journalists Amy Silverman and Sam Burdette examined 10,000 incident reports filed in 2019 and 2020 and discovered hundreds of claims of sexual and physical abuse of people with intellectual and developmental disabilities and more than 3,500 instances of alleged neglect.

Part 3: Unaccountable: The abuse of a 4-year-old boy with IDD was caught on camera, and his caregiver confessed to police, but the case is among hundreds that the state could not prove.

Part 4: Sex ed and IDD: A pilot program of Special Olympics Arizona helps athletes with IDD navigate healthy relationships.

Part 5: What next? Four years after the rape of a woman at Hacienda HealthCare launched reforms, critics say the state is still not doing enough to protect people with IDD from abuse.