Frontline Initiative: Supporting Healthy Relationships
Supporting relationships for people with IDD
A rumble movement is happening for people with intellectual and developmental disabilities (IDD). As a former Direct Support Professional (DSP) and current sexuality educator, I am ecstatic about the momentum. You may have read about the importance of sexuality education for people with IDD. National Public Radio’s Joe Shapiro completed a series on this recently. It included: sexuality education for people with intellectual disabilities. You may have heard about the alarming rates of sexual abuse among people with IDD. The Atlantic released, "The Right to Sexuality". The video tells the story of a married couple and the challenges they faced to live together as a married couple needing supports. These stories and others like them keep making news. The #MeToo has changed the landscape. Discussions about consent are heard everywhere. People with IDD are advocating for intimacy, relationships, and education.
DSPs are on the frontline every day. They know that people with IDD have much smaller social circles than their similarly aged peers and have much less knowledge about healthy relationships due to lack of access and education (McDaniels & Fleming, 2016). DSPs also know their organizations and agencies set the limits of these relationships and how much support DSPs can provide (Samowitz, 2010). Guidelines about the relationships of people with IDD vary greatly by state, county, and agency that provides supports. Some organizations now offer workshops for the people they serve. Workshops empower people with IDD, as well as DSPs. Some community programs also offer educational workshops for people with IDD. You may want to research this as a resource.
So what can you, as a DSP, do to support the people you work with to have healthy intimate relationships?
Ask about your employer's policy
First, ask your agency what the policy is regarding intimate relationships for the people you work with. If your agency does not have a clear policy, ask for clarification. If your agency defaults to the state law on consent (as many do), ask how this affects people you support and their intimate relationships. It is also important to ask how to make sure that the people you support provide consent. Find out what that process includes.
It is important to listen to the person you support about what they want. It is important to support their choices. Love and close relationships are part of the human experience.
Assess your own values
Second, it is important that DSPs assess their own personal values. As a professional, you need to separate your values from those of the person you support when talking about sexuality and intimacy. Why? We all have different backgrounds, cultures, beliefs, and sexualities. While some people may believe sex before marriage is wrong, others may not have the option or opportunity to marry. Does that mean sex is not an option? It is important to listen to the person you support about what they want. It is important to support their choices. Love and close relationships are part of the human experience. Intimacy is different for every person. Sexuality includes gender, self-expression, self-esteem, body autonomy, faith, family, body image, and pleasure – just to name a few! So, when someone asks about something related to values, such as, “Is it okay to date more than one person at the same time?” the answer could be “What do you think?” You can support the person to process their thoughts. You can often help them answer their own question. DSPs can also answer, “It depends on your own values, which may be different from mine.”
When a person you support has questions, they may come to you for answers. For some, talking about sex is uncomfortable. Actually, for most Americans, talking about sex is uncomfortable! However, you are not required to know all answers or answer all questions. When I talk with DSPs, I tell them the first thing they should do when asked a question about sex is: breathe! If you need a little more time, respond with, “That’s a great question! Tell me what you know about [the topic].” This buys you some time to collect yourself. It also helps you understand what the person is asking. For instance, someone may ask what a “virgin” is. That does not necessarily mean the person is asking about sex. They may just want a definition. When someone asks one question, they are usually asking just one question. You are not now responsible for the sex talk with them. You can answer their question and see if they are wanting more information.
Know that supporting people to have healthy intimate relationships is not a one-size-fits-all approach. Some people may be interested in ways to find a partner. Some people may want to know how to maintain a relationship. Some may want to know how to determine if their relationship is healthy. Human touch and meaningful relationships are important to all people. Support for those experiences has not always been available or encouraged for people with IDD. Remember that intimate relationships mean something different to each person. All people deserve the right to explore their sexuality.
McDaniels, B., & Fleming, A. (2016). Sexuality education and intellectual disability: Time to address the challenge. Sex & Disability, 34, 215–225.
Samowitz, P. (2010). A sexuality policy that truly supports people with disabilities. Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities, 23(2). Retrieved from https://ici.umn.edu/products/147