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“We Can” Project: Incorporating Intellectual and Developmental Disabilities Communities into Prevention

A card from a participant that says: "Dear Miss Rice, Thank you for teaching me how to stick up for myself. I can stick up for myself when I get hurt. I can stick up for a friend. I can stick up for my brothers. I can stick up for people."

By Joanna Dragan, STTARS Program Supervisor at SPHS CARE Center

When we were planning our sexual violence prevention strategies for the 2013-14 year with one of the counties in our service area, the population identified as most underserved and highly vulnerable to victimization was the Intellectual and Developmental Disabilities (IDD) community.  As a sexual violence services center, we had long recognized that more prevention work needed to include this population. While we had some applicable prevention resources, our staff felt out of their comfort zone implementing the curricula. On top of that, we had never been able to generate much interest in prevention from the local providers that were working with IDD clients.  

Recognizing a Need

After some serious discussion among staff and our community partners, we decided that it was time to earnestly commit to providing quality and developmentally appropriate sexual violence prevention services to the IDD communities in our service counties. Armed with a pledge from the Greene County Human Services Department to encourage their contracted IDD provider agencies to work with us in our prevention efforts, we forged ahead to develop a comprehensive plan that would allow our center to launch this initiative.  Named after our chosen curriculum, developed by the Blue Tower Training Center of Decatur, Illinois, the We Can Stop Abuse Project was born.  

We knew that our overarching goal was to saturate our IDD communities, and the allies connected with these communities, with information and skills to prevent sexual violence.  We recognized that many of the people that we would work with would have a history of abuse and a past or current environment not ideally suited to their recovery needs.  This could be attributed to a family culture that was accepting of the cycle of abuse, or they may face a lack of support due to high staff turnover in the provider agencies where they were receiving services. There may be inadequate training of staff in trauma-sensitive response, or other factors within an alternative living situation.  

We also knew from our legal advocacy efforts that investigation and prosecution of sexual violence among this population could be difficult because of the level of functioning of both the victim and the perpetrator.  We had often seen aggressors in those situations that did not clearly understand their offense because there had been no education regarding healthy sexuality or consent.  We had worked with victims that did not fully identify as such because of their indoctrination to adhere to traditional gender roles in which women must be submissive and men should behave aggressively when initiating any type of sexual interaction.  

Implementing Change

The first task on our list was to find inclusive, thorough, and trauma-sensitive sexual violence prevention curricula that could be used within our selected community.  This was not an easy job, as the IDD community, along with the older adult population, tend to be overlooked when it comes to any topics relating to sexuality.  After much research, a multi-session sexual violence prevention curriculum was chosen.  We were careful to ensure that the resources that were chosen could be utilized with people of varying abilities and developmental levels, as well as providing adequate dosage.

Next on our priority list was to identify and initiate additional training for all center staff in working with individuals diagnosed with intellectual or developmental disabilities so that any requests received from this population, whether for prevention, counseling, or advocacy, could be fulfilled with confidence and competence.  

Finally, we needed to develop a plan to engage our local IDD community, as well as their families, caregivers, and service providers.  We knew it was important to have a convincing message that our programming was necessary and relevant.  We had to outline the importance of building a primary prevention framework where lessons learned could be shared and perpetuate ongoing education, as well as create cultures of safety and inclusion.  

Expanding the Scope of our Efforts 

As our work began, we immediately recognized the need for flexibility and ongoing conversation with our community partners.  While the project was initially designed to work with adults ranging in age from their 30s to 50s, we have shifted focus to include older adolescents and young adults between the ages of 18 and 26.  This shift was brought about by growing interest from community providers and school districts and the feedback given by community partners and consumer teams on how efforts could have the most impact.  In exploring current issues with our project stakeholders, we have sought to expand our educational offerings on healthy sexuality, personal hygiene, and consent, as well as about how to identify and address the risks of peer-to-peer perpetration.  

Changes and Challenges

To date, we have been able to consistently work with four IDD-focused community organizations and the Life Skills classrooms of five local school districts.  Every one of these partners has requested additional programming following the initial multi-session curriculum, and we have been able to add at least one additional partnership each year since the inception of the project.  

While we feel our efforts have been successful overall, we have also faced challenges.  One of these challenges is to ensure that we are adequately addressing needs at multiple levels.  We want our IDD consumers to understand consent and healthy sexuality, to model appropriate boundaries, and to be empowered to be active bystanders. We need to engage their families, caregivers, and service providers in order to enlist their help in creating safe environments and encouraging ongoing conversations that promote healthy boundaries and respect.  We also constantly attempt to enlist new community partners to urge the audit of policies and procedures to enhance support of survivors and prevent sexual harassment and other sexually violent behaviors.  After years of doing this work, we still face resistance from some who deny the importance of implementing prevention activities within the IDD community.  

We are also constantly striving to better evaluate outcomes in a way that captures the progress that we are making with our community partners, and we are looking forward to increased collaboration with the Pennsylvania Coalition Against Rape (PCAR) to make this happen.

How to Get Started

For any group that is thinking about launching a sexual violence prevention project with your local IDD community, we would highly recommend it, but also caution that the process takes much planning and input from local partners.  Choosing the right preventionist to spearhead the project will also determine the level its success.  Our Prevention Educator, Anne Rice-McCorkle, has been able to distinguish herself to the communities and other entities that we have worked with.  She is not looked at as just another agency person that comes in with information to spout.  She has become a friend who listens to concerns, encourages growth, celebrates achievements, and imparts practical and necessary information to empower the lives of those she’s working with.  

Ultimately, our staff has learned as much from this endeavor as we hope our partners have learned from us.  It has been an exceptionally rewarding experience, and we anticipate taking what we have learned to initiate prevention work within other underserved populations in the future.

This is the fourth post in our Putting it into Practice: Diversity and Inclusion in Prevention blog series. The goal of this series is to highlight the work that folks are doing in to prioritize diversity and inclusivity in their prevention efforts.