YAI/National Institute for People with Disabilities Network Helps People with Intellectual and other Developmental Disabilities Lead Happier and Healthier Social/Sexual Lives
By Bobra Fyne, LMSW, Assistant Coordinator of Sex Education
In 1957 in a church basement in New York City a small group of parents who wanted to be sure that their adult children would have the social skills necessary to function fully in society, met to form the Young Adult Adjustment Center. In 1964 three programs, the Adjustment Center, the Social Club and the Alumni Club became the Young Adult Institute. In the 1990s it was decided that since we now provided services to people from birth through end of life, the words “Young Adult” no longer fit and we changed our name to YAI/National Institute for People with Disabilities Network. Almost 60 years and a name change later over 4,500 staff from 400 programs provide services to people with intellectual and other developmental disabilities (IDD) in New York, New Jersey, Puerto Rico and the Virgin Islands. While our name has changed, our mission of helping people live as robust a life as possible has not. Our vision of “Living, Loving, Working” drives how our staff approach their work with people with IDD. Helping someone to have a satisfactory living and working life are much easier for accomplish than helping someone have a life filled with love, especially when that person’s desires are to have a life filled with love and sex.
The majority of persons with IDD live contentedly and work productively in their community with minimal assistance. Some people with IDD, however, have had others making decisions for them, and a lifetime of living in a society where people have told them they are “not whole” and do not have the same need for emotional intimacy as people who are “normal.” Such messages have left many people with IDD without insight into their own wants and dreams.
In a very general sense, it is difficult for people with IDD to gain access to others they can have a relationship with. Many people with IDD operate in very small social circles. They may live in group homes, or at home with their parents or other legal guardian, and go to a day program, but chances are they are interacting with the same people everyday. In many cases, a daily routine is standard and the ability to interact with people they meet at a day program on a social level or meet new people is rare or non-existent. Even with the best of intentions people with IDD are quite often the victims of over-protection for the sake of health and safety. Their history marks them as vulnerable to abuse and exploitation and statistics substantiate the claim. “Among adults who are developmentally disabled, as many as 83% of the females and 32% of the males are the victims of sexual assault.”
So what happens to people with IDD as a result of this?
They are often denied the basic rights most people demand as adults; such as making decisions about where they live, who they live with, who their friends are, what to do with their free time, and even to have an intimate relationship with someone else. These methods of over-protection often also exclude people with IDD from obtaining the necessary education to make informed decisions about their body, and sexual relationships. That is often the reason why acceptance in the IDD community entails having unprotected sex with a typically-abled individual to feel more “normal”. The ability to negotiate condom use and establish boundaries is a skill that many people with IDD often lack because of a prevailing thought that either, they aren’t sexually active, don’t want to be sexually active, or are incapable of making that determination for themselves. People with IDD have the obstacle of gaining access to others in order to enrich their quality of life.
However, quality of life can not be explored without looking at a person’s ability to exercise choice in the development of personal relationships and the expression of one’s own sexuality.
For people with IDD, there has been a disturbing trend in the past to restrict their sexual rights. “The principal stumbling block for many professionals, administrators, and parents in enabling individuals with developmental disabilities to exercise their rights to sexual expression seems to be the issue of consent to sexual interaction with others. Under the guise of protecting such people from undue harm, abuse, or exploitation, their “protectors” often abridge the rights of these individuals as a safety measure to justify their decisions on the basis that people with developmental disabilities are unable to give informed sexual consent.”
While there are certainly people with developmental disabilities who in fact need some form of protection, often this protection is excessive and the deterrence of sexual expression may have a more harmful impact on the individual than the sexual activity would. The individual, looking for a way to meet his/her sexual needs, may seek out partners in inappropriate, dangerous settings where they may be unable to negotiate safer sex, putting them at high risk for HIV/AIDS.
Staff who work with people with IDD need to be trained to help people develop healthy and functional expressions of their sexuality. In order to support this, YAI/National Institute for People with Disabilities Network (YAI/NIPD) has developed a variety of curricula and videos to help provide sexuality training, education and supportive counseling. These tools are designed to ensure maximum opportunity to enhance relationships, and help people express sexual feelings in functional ways. We strive to ensure that people who receive services from our agency are given the information they need to take responsibility for their bodies, emotions and behavior consistent with their developmental level. In the mid 1960s YAI became a leader in the field of Sex Education for people with IDD. In the late-1980s YAI/NIPD was the first agency in America to provide HIV/AID education to people with IDD. In the mid-1990s YAI/NIPD created a tool for determining whether or not a person has the capacity to give consent to sexual acts. This tool is used as a standard in the field. And in the early- 2000s YAI created its first social skills building dating program, “You And I”.
HIV Education – YAI began focusing on HIV/AIDS education at a time when the pandemic was still relatively new, and it has remained a pioneer in this area. The agency has developed many of the outstanding resources now being used in the field. It produces a range of materials that are developmentally appropriate, culturally sensitive, and client-focused, including the video and training manual AIDS: Teaching Persons
with Disabilities to Better Protect Themselves and AIDS Talk a game used to help educate people with IDD available in English and Spanish.
One major goal of HIV/AIDS education programs has been to help people move successfully from high risk sexual behaviors to no-risk sexual behaviors. For some people that has meant moving from sex without a condom to having sex using a condom every time. For others it has meant going from sex which is exclusively intercourse to non-penetrative sex, and for others still it has meant a change from being sexually active to complete sexual abstinence.
While it is always easier to tell people to “just say no,” any person who can make informed choices about their behaviors needs to be given information about all of their options. When we hold to standards that are impossible for any person to live up to, we run the risk of closing the door to communication. Persons with IDD have a learned compliance, often trying to please the people with whom they work. If this happens, the individual will not be able to approach the staff for some much needed help. The stakes will be too high. A more realistic standard of change would support people making these major lifestyle changes with a greater potential for success.
Training staff who work with people with IDD continues to be our priority. Training staff, giving them information they need about this disease, will help them to demystify the many issues and misconceptions that continue to surround this pandemic. Staff working with people with IDD need basic AIDS education (what HIV is and how it is transmitted and prevented) all of which is taught to staff as part of regular on going staff training.
You And I Dating – In many ways the quality of a person’s life directly correlates with their ability to make intimate connections with others. A person who experiences a feeling of connectedness may be far less likely to look for emotional intimacy with strangers, or to choose unsafe behaviors that put them at risk for HIV/AIDS and other sexually transmitted infections simply in order to connect with another human being. Fundamental skills such as maintaining a conversation, understanding the difference between a stranger, an acquaintance, and a friend, or choosing where to go in a city as large as New York or as small as Buford, Wyoming (population 1), can be daunting for a person with cognitive limitations. Skills such as successfully negotiating condom use, and ways of saying no to your partner while still maintaining a relationship, require even greater competence. These are just a few of the skills needed for successful and safe relationships. Unfortunately, even if a person with IDD is proficient in these skills, they often lack the extended social network essential to meeting someone with whom they can share a safe social life and a sense of connectedness.
The end result is often a person who, finding it too difficult to connect with another person, sits at home, night after night, feeling lonely, isolated and worthless. Another person may make the disastrous choice to have unprotected sex with multiple partners or stay in an abusive relationship, not recognizing there are healthier options.
People with IDD share the need to love and to be loved. What is often missing is the opportunity and freedom to establish relationships and express sexuality. By providing social skills development and the means to have productive interactions with others, people develop a more positive sense of self and more advantageous experiences in society at large.
To help people navigate the maze of relationships, we created “You And I: A Social Skills Building Dating Program.” Pooling diverse experiences, clinical knowledge and administrative capabilities, we created a comprehensive program which includes self-analysis of needs, social events and both mandatory and elective skill building workshops. You And I is been designed to help people with IDD acquire the social competence necessary to find an emotionally satisfying relationship; to provide a safe environment to practice those skills; and to expand their networks for fun and recreation, while offering a way to augment the opportunities they have to meet another person who is also looking for ways to have a more meaningful and satisfying relationship.
To avail themselves of the services provided by You And I, applicants complete a questionnaire expressing their personal traits, interests and expectations. After review of the application the person will meet with a staff member from the program to assess the person’s ability to function responsibly in a social/dating venue. The person must also provide us with their most recent psychological assessment which helps us to determine whether the person has behaviors which pose a danger for harm, abuse or exploitation of others or a history of self-inflicted harm.
The You And I staff next use their combined clinical skills and program guidelines to assess each person being considered for membership in the program. People who do not yet have skill levels appropriate for You And I are offered social- sexual-relationship skill building through existing YAI/NIPD socialization programs in regional multi-service centers.
Once passed the screening process members attend a number of skill building socials. During each three hour social held at one of our Manhattan sites, people attend one one-hour workshop and two half-hour workshops. They choose from a number of mandatory sessions where they reinforce some of the skills necessary to keep themselves safe from harm, abuse, or exploitation. These workshops include information about HIV/AIDS and other sexually transmitted infections (STIs); how to recognize a potentially abusive situation; how to safely remove oneself from a dangerous situation, how to enjoy a sexual life, etc. Elective workshops may focus on conversation skills while waiting on a movie line, 101 cheap places to eat, expanding recreation choices, or beauty/grooming tips. During the third hour, people have the opportunity to continue the social learning in a safe, non-threatening, friendly environment. There is music, dancing, and a number of social skills building games throughout the evening, with staff on hand to mingle and support people in whatever way may be necessary. All of the You And I workshops and experiences have been designed to help a person think about new ways to enhance their lives.
Sexual Consent – YAI adheres to the standard principle of development that adult sexuality is an integral part of the total personality. Similar to most adults, people with IDD may have the desire to engage in sexual activity with another person. In New York State, Penal Law Article 130, dictates that this sexual interaction should only occur if both parties are consenting. YAI developed an “Inclusionary Standard for the Evaluation of Sexual Consent.” This sexual consent policy, and the related tools for assessment help ensure a person’s rights while at the same time providing for their safety and well being.
The sexual consent law in New York states that: (1) both people must be at least 17 years old; (2) both people must voluntarily agree to any and all sexual acts; and (3) both people must be of sound mind (“not mentally defective or incapacitated”). Additionally there are three principles of legal sexual consent as indicated in most state laws: (1) Intelligence; (2) Knowledge; and (3) Voluntariness. Both parties must have enough intelligence to retain the knowledge necessary to make a voluntary decision free from coercion. YAI believes that the above standards could possibly be prejudicial against people with IDD because of varying degrees of limited intelligence. When evaluated using this definition – does the person have the ability to understand the nature of the sexual activity they are agreeing to?
Our assessment tool focuses on legality and not on morality. It is YAI’s opinion that assuming a single standard of morality applies to all communities will adversely affect those whose values and lifestyles might not be agreed with. People may be better served by making them aware of the possible legal consequences and the range of community practices for their sexual behaviors rather than imposing values unacceptable to them. In situations where a person is at risk for undue harm, abuse, or exploitation, he or she will need training and assistance in identifying these situations and the knowledge of how to avoid or extricate him/herself from them.
While the burden of determining consent often falls on the clinicians or administrators who must both safeguard the rights of people with IDD and protect them from undue harm, abuse, or exploitation, it is the role of the agency to provide staff with clear and usable policy and procedures in carrying out their responsibilities.
It is imperative that an inclusionary, yet responsive, standard be used for determining sexual consent, if all adults with developmental disabilities are to have a full opportunity to exercise their inalienable rights to life, liberty, and the pursuit of happiness.
Sex Education – It is not enough for an agency to determine whether or not someone has the capacity to agree to sex, especially if the determination is that they do not have enough information to make an informed decision about sex. It is imperative that the person is given the education they need to keep him or herself safe and have a happy and healthy sexual life. Over the years we have developed a number of videos and curriculum to help staff teach people with IDD what they need to know about sex. Our 9 part video series addresses everything from how to tell the difference between a stranger, an acquaintance and a friend, to starting a relationship with someone special, to enjoying your sexual life. Our 13 unit curriculum Sex And Social Skills In The City provides skills building in areas such as how to recognize your feelings and the feelings of others and what to do with that knowledge, differing relationships (yourself, others, and your sweetheart), parts of the body, genital health, individual sexual expressions, masturbation, STIs, sexual abuse prevention and enjoying your sexual life. Our latest DVD entitled Sexually Speaking addresses everything a person would need to know in order to be deemed able to give sexual consent. Almost all of the actors in the DVD have IDD providing the viewer the opportunity to see him or herself mirrored in the performances they watch. All of our DVDs and curricula can be accessed by going to www.yai.org.
In Closing, the challenge of all people who care about the lives of people with IDD is to take a good look at our values and the values of the organizations we work within and see if they are in the best interest of the people we provide services to. Are we really helping people to live fulfilled lives or are we taking their rights away needlessly. We must remember that all of us are advocates and take seriously the need to assist people with IDD to develop and maintain healthy relationships and to advocate for people to have access to opportunities and the education they need to help them build and maintain relationships.
For more information about our DVDs, the You And I program or for a copy of the YAI consent tool, contact Bobra Fyne at firstname.lastname@example.org