Article

Frontline Initiative: Supporting Healthy Relationships

“People like us need to have relationships too.”

Author(s)

Mary Kay Rizzolo is the president and chief executive officer of The Council on Quality and Leadership (CQL).She can be reached at mkrizzolo@thecouncil.org

One self-advocate recently told us, “People like us need to have relationships too.” We hear this all of the time from people with intellectual and developmental disabilities during Personal Outcome Measures® interviews, a person-centered discovery process that explores quality of life outcomes. This also something we find in our various research studies (Friedman, 2014). Over and over again people share that emotional, physical, sexual, and intimate relationships are important to them.

Despite their desire to have intimate relationships, 42.6% of people with disabilities do not have intimate relationships present in their lives (Friedman, 2019b). There are many things that contribute to this, but one in particular could have a big impact.

The role of providers

Human service organizations play an essential part in supporting people. They strive to support people’s goals and dreams. Yet, only 58.7% of them know and understand people’s preferences for intimate relationships (Friedman, 2019a, 2019b). We also find that a little bit of support can go a long way. Support providers who understand a person’s preferences for intimate relationships are 20 times more likely to address barriers to these relationships (Friedman, 2017).

The National Alliance for Direct Support Professionals (NADSP) ideological founder, John F. Kennedy Jr. wrote, “Quality is defined at the point of interaction between the staff member and the individual with a disability.” Considering that this point of interaction involves direct support professionals (DSPs), the potential for success in supporting intimate relationships will often rest on their shoulders. So, the question is, how can human service organizations equip staff members to provide these supports?

An uncomfortable conversation

An interactive research study to learn more was conducted by Carli Friedman, CQL’s Director of Research. A self-advocate explained, “Professionals sometimes are scared to talk about it [sex and relationships] because they don’t know what’s appropriate and what’s not” (Friedman, 2014). It’s true. It can be difficult to have discussions about sex, safety, rape, consent, and other issues. They’re sensitive topics and extremely personal to people.

Another self-advocate summed it up perfectly: “You [DSPs] have to learn how to talk about sex” (Friedman, 2014). Regardless of the complicated subject matter, the conversations have to happen. The question isn’t “if,” but “how?” Since DSPs are at the point of interaction, the conversation will likely begin with them.

Hand holding card number 11, Safe Sex and STIs

Simple as a card game

After thousands of Personal Outcome Measures® interviews, numerous articles, and multiple research studies, it was time to put it all together. Support providers need a practical tool to start conversations. What if it were as simple as a card game? What if you could talk about topics like dating, masturbation, and gender identity through games such as, Go Fish, Rummy, and Poker? We’re not bluffing.

We’ve created the Sex & Relationships Conversation Cards to spark these discussions. They cover 18 different subjects under three categories: Topics, Rights and Responsibilities, and Supports. The tool uses 11 popular card games and a 40- page facilitator’s guide. Through these tools, DSPs and the people they support can interact and learn. They can have discussions about safe sex, privacy, respect, reproduction, and anatomy, just to list a few. The conversation and learning is far reaching. It goes beyond what people receiving services need to be aware of. It also teaches the DSP what they need to do in providing supports.

For example, the Topics card for Anatomy and Reproduction provides an overview of sexual organs, body parts, and pregnancy. There is also a Rights and Responsibilities card for this topic. It describes the role of a doctor during a doctor’s visit. It explains a person’s rights involving birth control. The Supports card for the topic offers advice like providing resources about reproduction. It offers assistance in accessing birth control, including setting up doctor’s appointments.

Starting the discussion

People with disabilities are five times more likely to have intimate relationships when organizations provide support to pursue, form, and maintain those relationships (CQL, 2020). So, let’s start with a discussion. Let’s put our cards on the table and talk. Learn more about CQL’s Sex and Relationships Conversation Cards.

References

  • CQL | The Council on Quality and Leadership. (2020, February 25). TuesData. Retrieved from https://www.facebook.com/TheCQL/photos/a.10151692363572929/10158104004092929/?type=3&theater

  • Friedman, C. (2014). In my voice: Sexual self-advocacy [Video]. Retrieved from https://youtu.be/M5Q5hW62M4Y

  • Friedman, C. (2017). Learning more about intimacy through data. Let’s Talk About Intimacy. Retrieved from https://www.c-q-l.org/resources/newsletters/lets-talk-about-intimacy/

  • Friedman, C. (2019a). Intimate relationships of people with disabilities. Inclusion, 7(1), 41–56. https://doi.org/doi.org/10.1352/2326-6988-7.1.41

  • Friedman, C. (2019b, August 16). Intimate relationships: Organizational supports can make the difference. Retrieved from https://www.c-q-l.org/resources/articles/intimate-relationships-organizational-supports-can-make-the-difference/