Many parents feel they don’t know how to have "the talk" with their children. For Janet Bowen, whose son has cerebral palsy, the process took years as she struggled to explain the facts of life in a way he would understand.

“I was trying to find the right way to present the information to him so he could understand because he did have some language difficulties,” Bowen said. “A lot of times it was repetitive. It was a difficult thing.”

This is not the only difficulty that parents of children with developmental disabilities face. More than 90 percent of people with developmental disabilities will experience sexual abuse, according to a press release from YWCA Metro St. Louis.

Now, a new program seeks to address these issues in St. Louis.

Beginning in July, YWCA Metro St. Louis’ Regional Sexual Assault Center will provide sexual assault prevention training to city residents with developmental disabilities. The program is funded through a grant from the St. Louis Office for Developmental Disability Resources.

“Across the board, the rate of sexual assault against individuals with developmental disabilities is significantly higher than the general population,” said Michelle Darden, executive director of DD Resources. “There’s a trust that’s developed and they don’t always know when that trust is being violated and when their rights are being violated and that they have a voice in reporting.”

While DD Resources designed the scope of the project, specifying that it would cover sex education, healthy relationships and sexual assault prevention, the YWCA is responsible for the curriculum and implementation of the training.

“The model we’re using really speaks to a lot of the reasons we’ve created this vulnerability,” said Christina Meneses, education supervisor for the YWCA’s sexual assault center. “A lot of people with developmental disabilities are kept away from any kind of sexual education, often because they’re viewed as nonsexual throughout their entire lives, which puts them in a place of vulnerability when it comes to perpetrators.”

The YWCA’s training will follow an established curriculum called “We Can Stop Abuse” created by Blue Tower Training in Illinois. It includes a series of sessions on topics such as feelings, relationships, identifying a safe person, anatomy, body safety, assertiveness, empowerment, and recognition.

Safe Circle Coalition

The new program is similar to work that the YWCA has been doing in St. Louis County since March 2010. Acting in a coordinating role, the YWCA gathered a group of disability service providers to create what it calls the Safe Circle Coalition.

With funding from the Productive Living Board of St. Louis County, the coalition brought in nationally recognized experts to train staff members at disability agencies, who then implemented the curriculum with their own clients.

Sharon Spurlock, director of family supports and quality at St. Louis Arc, a member agency of the coalition, said that while it is still early to evaluate the program, she has seen promising signs.

“Certainly we’ve got people that are expressing that they want to be a good friend and that they want to have friends that make them feel good about themselves. We have some people starting to talk about dating that maybe hadn’t been talking about that before,” she said.

Her clients’ families have also reacted positively, Spurlock says. At the beginning of the project, the Safe Circle Coalition surveyed 2,000 caregivers in the area, asking participants if they would be interested in training about relationships for people with disabilities.

According to Meneses, 79 to 82 percent responded that they would be interested in training for their family member and for themselves.

“It gave us a lot of confidence to go forward because it was like OK, this is something that they do really value and understand that there’s a need for,” Spurlock said.

Since going through the Safe Circle Coalition training in the fall, Spurlock says St. Louis Arc has trained about 50 staff members and 50 relatives of individuals with disabilities. The organization has also run three 10-week sessions for its clients and is in the midst of a fourth session this summer.

Beyond preventing sexual assault

In the city program, the YWCA’s educators will run training sessions in individual clients’ homes as well as group homes and sheltered workshops. Meneses says they plan to work in groups as small as one or two individuals to make the program as effective as possible.

“We’re going to be able to tailor our training methods to the learning styles of those individuals,” she said.

Like in the county, this program will go beyond sexual assault prevention to  cover basic sex education. Meneses believes this can be a particularly important and challenging area.

“Individuals with developmental disabilities may sometimes be part of a community or raised in a community that only emphasizes the negative parts of sex... .We might be starting at ground zero when it comes to their information about sex. We might be starting at a deficit,” Meneses said.

The other main component of the training focuses on building healthy relationships, which can include both platonic and romantic relationships.

“People with developmental disabilities don’t always know that it is inappropriate to partake in public displays of affection in the workplace. It’s... helping them understand what’s inappropriate, what’s appropriate in a public setting, how to go from a friendship to dating to marriage,” Darden said.

Bowen, whose son is now 26, said this is still a concern for her.

“We’re still struggling with these issues, with having friends and developing more intimate relationships,” she said. “He wants the same things as his siblings, to have a family.”

She added that while the idea of the YWCA’s program sounds good, she hopes “it’s done appropriately so that everyone benefits from it.”

“It’s one thing to talk to someone who can understand what you’re saying, but being able to craft it so that they [people with disabilities] can understand is different,” Bowen said.

Meneses agreed, explaining that until recently there has been a lack of knowledge among professionals on this topic. That’s why the YWCA also plans to provide training for disability agencies.

Those sessions will consist of a basic program on “Rape 101” and more in-depth training on trauma-focused practices.

‘A great sign’

With all of this new training on its way, Meneses expects to see a significant increase in the number of reported cases of sexual abuse and assault for individuals with disabilities. Cases of sexual assault, especially against people with disabilities, are extremely underreported, she says.

Bowen agrees that people don’t often talk about abuse. “There’s a lot of stigma, not only a) because of the assault or abuse, but b) because people think ‘your kid’s not normal anyway, what did you expect?’” she explains.

“We can’t assume that just because numbers are higher that actual levels of sexual violence are higher. What we think that means when numbers are higher is that survivors feel it’s safer to talk about it and are more aware of resources,” Meneses said. “So we believe that would be a great sign.”

The grant from DD Resources goes into effect on July 1, and training sessions will begin as soon as possible after that, according to Meneses.