Mad Hatter Wellness is a company that creates comprehensive sexual health programs that teach and empower people with intellectual disabilities. Their curriculum Sexuality for All Abilities, contains activities and lessons that cover many different topics regarding sexuality and relationships. This is a holistic program that combines mindfulness techniques to address sexuality topics and provides a safe environment that ensures growth and learning. They offer a student and an adult option of the curriculum and can be purchased for $375 at the link below.
On top of this, Mad Hatter Wellness also sells other tools to help teach and practice topics that are covered in the curriculum. Their Boundaries Flip Book that form sentences regarding boundaries. It created discussion for healthy boundaries, as well as highlights what is okay and what isn’t, and when these behaviors are appropriate. On top of this, they also have a Family Discussion Guide, which offers activities, information, and discussion questions that will help families discuss healthy relationships and boundaries. In addition to these, they offer self-paced online courses, and more physical resources that can be used to implement the curriculum.
Oak Hill Center for Relationship and Sexuality Education (CRSE) looks to educate and increase access to important sexual health information through various preventative programs. They also aim to decrease the vulnerability to sexual abuse that the intellectual/developmental disability community endures. They offer different curriculums, workbooks, parent/caregiver workshops, professional development workshops and therapeutic education.
Their most recent curriculum, Positive Choices, is designed for secondary students and aims to improve critical judgement about sexual health and relationship safety. On top of this, students will learn life skills, safe boundaries, women’s and men’s health, healthy relationships, and sexuality. This curriculum can be purchased on the Oak Hills website and costs $430. The teacher’s manual can be purchased for $180, and the student workbook is $25. Information is linked below: http://relationshipandsexuality.oakhillct.org/positive-choices/
Open Future Learning is a company that offers a wide variety of online training for staff, or anyone else working with individuals with disabilities. They offer modules in abuse prevention, communication, advocacy, and many more topics. They have staff training modules, 30 minute programs, and an audio learning module. Membership can range from $112-$2263 per month, depending on the amount of active users. Linked below is Open Future’s Homepage.
Elevatus offers a variety trainings staff, direct support professionals, educators, self-advocates and parents to teach sexuality education to children and adults with developmental disabilities. In addition to their trainings, Elevatus has a sex education curriculum that can be purchased.
Here are examples of some of their trainings and the costs:
For Staff and Professionals – Developmental Disabilities and Sexuality 101 ($397)
For Parents/Guardians – Talking With Your Kids: Developmental Disability and Sexuality ($47)
In-service/live workshops and a 3-Day Certificate Training ($725) for anyone who wants to lead sexuality education classes with people with developmental disabilities.
The Friendships & Dating Program (FDP) offers inclusive teaching plans for individuals with intellectual and developmental disabilities. A unique aspect of this program is its emphasis on preventing interpersonal violence. There is a version of this program for youth with serious emotional disturbance. The FDP focuses on skill development through experimental learning and group activities with an interactive 10-week curricular plan. Interested groups can purchase the curriculum on its own ($600) or purchase the curriculum in combination with a train the trainer support provided live online ($1,800). You can find more information about the FDP from the below link. Some module illustrations are available on the website.
These days, it is hard to find an age appropriate content about sex, dating and abuse. Children have questions about their bodies, gender and reproduction. Teenagers worry if their bodies are developing normally or not while older adolescents struggle with peer pressure, changing relationships and emerging sexual feelings. AMAZE is an amazing website for parents and educators which helps them to expose their child to age appropriate content about sex through short videos. The website provides an insight to young people to successfully understand puberty, healthy body image, distinguish between healthy and unhealthy relationships, concepts of consent and mutual respect. Video topics are designed to meet the learning objectives outlined in the National Sexuality Education Standards.
Parents are the primary sexual educators of their children. By answering children’s questions, a parent let them know that you are “askable” and establishes an open line of communication that will serve you and your children well as they mature into sexually healthy young adults.
AMAZE also has resources for younger children like the parents’ playlist from amaze jr. It is designed to help parents become comfortable and confident talking to their children openly and honestly at any age.
This video will help parents to know when to talk about sexuality with their kids.
Do you think so playing “doctor – doctor” is safe or not? Check this video out which helps you to communicate your thinking and others about this game.
This video will model to the adolescents with disabilities to learn about manage their relationships with person they like or have attractions. This video guide them to deal with peer pressure and make healthy relationship.
This video helps your child to understand their body parts, difference between a male and female, and similarities between boy and girl.
Raising an individual with a disability presents a different set of obstacles then an abled individual may, but one topic that all parents must address is sexuality. Individuals with disabilities are sexual beings and therefore deserve an education on sexuality. While parents may acknowledge this need, finding resources and strategies to present the information may be more difficult if you are raising an individual who requires a different method of learning.
The Sexuality Resource Center for Parents provides a well rounded variety of information pertaining to sexuality. The website includes a section of information labeled “for all parents” that contains subjects they believe are useful for all children. In addition, they provide sections titles “For parents of children of typical development”, “For parents of children with developmental disabilities”, and “For parents of children with physical disabilities”. In each section, you can find a variety of information such as basics, specifics, activities, and additional resources. They also include tip guides!
The Sexuality Resource Center for Parents works to provide a better, comprehensive information base for parents to use when addressing sexuality to their child. The variety of knowledge is extremely useful when trying to find information to meet your child’s specific needs. In their own words, their mission statement claims “It’s time to acknowledge that children with developmental disabilities will become adults with sexual feelings, and as such, we must provide them with the information and skills they’ll need to become sexually healthy adults.“
Sexual Education is known to be a vital part of education that many people with disabilities do not receive. The National Council on Independent Living (NCIL) developed an excellent series of youtube videos aimed to help close this gap. The sex ed for individuals with I/DD project is a 10 part video series that can be seen on youtube. The project contains videos that discuss a range of important sexual information from healthy relationships and consent to how to use a condom. The videos also contain self advocates. Understanding that individuals with disabilities are sexual beings and informing such individuals on all sexual topics is extremely important. The NCIL’s video series is an amazing resource. Linked below is the introduction video to the series. The videos can also be accessed though the Nation Council on Independent Living youtube channel.
Key social and emotional milestones during adolescence are often directly related to the abilities to initiate and maintain intimate relationships, maintain physically maturing bodies, and manage personal sexuality. Most adolescents with developmental disabilities have particular difficulty expressing sexuality in satisfying ways, consequently facing issues such as limited intimate relationships, low self-esteem, increased social isolation, deregulated emotional maintenance, reduced sexual functioning, and limited sexual health.
Appropriate sexual knowledge assists not only in achieving personal fulfillment, but protection from mistreatment, abuse, unplanned pregnancies, or sexually transmitted diseases (STDs). It also works to help solve problems of loneliness and problems with self-esteem.
This book will address this but also much more. Issues of physical and cognitive development will be discussed, including appropriate sexual development/urges and brain development, and innate similarities and differences of sexuality that could occur between people with autism spectrum disorders and intellectual or developmental disabilities, including the complexities of physical disabilities. The authors will also consider special considerations for group homes and recreational facilities, and specifically focus on concepts of ethics and models of consent (medical, legal, social, and educational), as well as how to deal with uncertainty.
Guardians should apply the professional judgment of qualified clinicians in developing individualized plans. These plans for services and supports should address competencies which the ward possesses, areas where education and
training are required, and current incompetencies which may implicate a duty to protect the individual. What this means in practical terms for professional guardians can be stated in four simple principles:
Know the law and regulations in the jurisdictions of your practice.
Know the bounds of your decision-making authority within your professional standards and ethics.
Know the extent and/or limitations of your decision-making authority imposed by the court.
Utilize treatment teams and ethics committees whenever possible.
One of the important pieces of these guidelines is understanding the law and regulations in your individual state. Sterilization and abortion are two major sexuality related decisions that often have specific laws and regulations regarding their practice. These have evolved from a long history of forced sterilization of individuals with disabilities and there continues to be controversy today (for example this recent case). Other decisions such as access to sexuality education, use of contraceptives, marriage, procreation, and access to sexual activity are often outside of the purview of the courts. In these cases guardians are instructed to use their own judgement based on:
The decision as the ward would when the ward’s wishes are known or can be established by interviewing the ward, their friends and family, or through a preference stating document such as a living will. Or…
The representatives values and beliefs in order to make the decision they feel would best serve the ward.
And must follow this stipulation:
The surrogate decision maker cannot give consent for sexual activities, but
must protect the rights to privacy for their wards when dealing with issues such as contraception or marriage, if the situation is appropriate.
Guest Room is a short film Written & Directed by Joshua Tate and starring Lauren Potter (“Glee”) and Michael Iovine (lovelandfilm.com). It won the Audience Award (Competition Short) at SXSW 2015.
I think you are going to love this movie. It’s beautiful, emotional, and honest. I could easily see this being used in a human sexuality classroom to help discuss parenting, consent, and support from families. It follows the story of a young couple who are faced in a situation many young couples find themselves in, an unexpected pregnancy. Like many young couples, the response of their families is shock and disappointment and this makes it difficult to determine their own feelings, hopes, and wants.
There was one statistic that was mentioned in the film that I had not heard before. It said that a women with Down Syndrome has a 50% chance of having a child with Down Syndrome. I did a little digging to see if I could find out more and received some help from The Tech Geneticist a project from the University of Stanford which seeks to increase the public understanding of genetics. About half of the eggs of a women with Down Syndrome will have an extra 21st chromosome (similar to what is described in this post http://genetics.thetech.org/ask/ask296). Her actual chance of having a child with Down Syndrome is less than 50% because fetuses with extra 21st chromosomes are at increased risk of complications. According to the National Down Syndrome Society only about 50% of women with Down Syndrome are fertile (ovulate).
It’s trickier when it comes to thinking about the father. Much less is known about the heritability (chance of passing a genetic trait on) of Down Syndrome for men with Down Syndrome, but it may be that their sperm that carry two 21st chromosomes would be less viable than their sperm that only have one. Both the Tech Geneticist and the National Down Syndrome Society suggested men with Down Syndrome seem to have much lower fertility rates than their same age peers with two 21st chromosomes.
A new curriculum called “Healthy Relationships and Autism” is now available from Wesley Spectrum (a behavioral health organization with several locations in the Pittsburgh, PA area). It was designed to teach skills to adolescents and young adults with Autism Spectrum Disorder or cognitive challenges in the areas of self care, sexuality, and relationship development. Their website has an example lesson to help you determine if it would be right for your students. They do not publish their pricing information (you have to email them for more information but they will send you a sample packet).
I have not used this curriculum but there is some evidence of it’s effectiveness. A study published in School and Educational Psychology evaluated this program with six students. These students showed increases in sexual knowledge which they retained one month after completing the class.
The 1 hour and 13 minute movie, Autism in Love, is about falling in love, wanting to fall in love, the struggle of understanding love, and heartbreak. More than that, this movie is about what it means to be autistic, how love shapes identity, and the support of family. There are multiple viewing options but it is currently airing for free on Independent Lens. It follows the stories of four individuals on the autism spectrum as they navigate issues of love and relationships.
This movie is more geared toward adults as the youngest person featured in the film is in his early 20s and much of the film centers on marriage. If you were working with older teens, you may want to focus on Lenny.
Chicago Children’s Advocacy Center is a program for sexual abuse prevention and response to crisis. They have supports specifically for children with disabilities. They recommend creating a family safety plan, teaching children about sex and sexuality, learning about sexual development, taking to caregivers/program staff about issues of sexuality, and watching others’ behaviors.I like this resource because the focus in on prevention through increasing the viability of sexuality.
The culture that makes it inappropriate to talk about healthy sex and sexuality creates a hidden space where dangerous sexual behavior can take place. Whenever we’re talking about prevention, I think that it is important to highlight that children and often adults with developmental disabilities cannot prevent their own abuse. Adults and older children with more power and more control manipulate to create situations where they can abuse. Prevention looks like trying to eliminate those spaces and creating opportunities for reporting. This agency seems to focus on that method and minimize language that blames the victim.
We came across a great resource from Safe Place concerning abuse, including sexual abuse, and children with a myriad of disabilities, including neurodevelopmental (ASD,ADHD, intellectual disability), physical and sensory (blindness, deafness), brain injury, and mental health disabilities. This guide poses many questions about communicating and interacting with children with disabilities who may suffer from abuse or neglect. It also offers many suggestions to caregivers, family members, and educators about how to understand specific disabilities in the context of abuse.