Guardianship and Sexuality

This is one of the most common questions  regarding sexuality and disability…

If you are a guardian of an individual with a developmental disability what is your role and legal authority regarding decisions on sexual activity?

According to the National Guardianship Association:

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:

  1. Know the law and regulations in the jurisdictions of your practice.

  2. Know the bounds of your decision-making authority within your professional standards and ethics.

  3. Know the extent and/or limitations of your decision-making authority imposed by the court.

  4. 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:

  1.  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…

  2. 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.

Promoting Justice: An Essential Resource Guide for Responding to Abuse Against Children with Disabilities

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.

You can find the guide here.

Dave Hingsburger- Blogger, Advocate, Educator

For those you how enjoy following blogs, and especially for those of you who enjoy blogs that feature individuals with disabilities, and particularly if you would like to read more about disability and sexuality- this blog is for you.

Dave Hingsburger is behind many of the resources from Diverse City Press such as Handmade Love/Finger Tips (maturation education), No How (abuse prevention), and Undercover Dick (condom use).  He also has written several books such as The Key (supporting individuals with disabilities who are also sexual offenders), R: The R Word (bullying self-advocacy), and Just Say Know (victimization).  This is not an exhaustive list, but it gives you an idea.

Enjoy!

New Laws Regarding Guardianship and Access Sexual Violence Services

Thank you to Kelli at the Developmental Services Center for sending out this information!  Over the past three years, three laws have been passed that improve public policy with the goal of increasing access to services for women with disabilities who experience sexual violence:

P.A. 96-318, eff. Jan. 1, 2010-  Consent of a guardian, health care surrogate or health care power of attorney is not required in order for a victim with a disability to receive health care or release forensic evidence following a sexual assault.

If a victim with a disability is unable to consent to the release of evidence, and the victim’s guardian, health care surrogate or health care power of attorney is unavailable or unwilling to release the information, an investigating law enforcement officer may release the evidence.

P.A. 96-1010, eff. Jan 1, 2011- An adult with a guardian can:

  •  decide whether his or her guardian can look at her/his rape crisis center records; and
  •  decide whether or not to waive the rape crisis center privilege.

P.A. 97-165, eff. Jan. 1, 2012-   An adult with a guardian can attend up to five, forty-five minute counseling sessions without the consent of, or notice to, the guardian unless the counselor or therapist believes such disclosure is necessary.

Click the link below to download fact sheets created for advocates and self-advocates

Public Policy Committee Fact Sheets 6.12.12

These fact sheets are a product of the Illinois Imagines Project, a collaborative among the Illinois Department of Human Services, the Illinois Coalition Against Sexual Assault, and self-advocates for people with disabilities.

Thank you to these groups who not only created these facts sheets but also advocated for these protections!

Autism Now- A Resource

Autism Now isn’t specifically focused on topics related to sexuality but they do have some great resources I thought I could highlight.

They have a series of webinars related to sexuality topics. If you click on the link you’ll be taken to a registration box that you have to fill out to view the material.  I’ve also included links to the slides- this is a direct link, you don’t need to register.

Slides:  “Sex is when people use their bodies together to share love and pleasure.”

Slides: “Research says that the IQ has to be below 50 before you can say IQ and parenting skill are connected (Feldman& Tymchuk, 2002).”

And they just had one on May 15th, but you’ll have to keep an eye on the archive list because it’s not up yet-  “Let’s Talk About Sex: Discussing the Topics of Sex, Protection, and/or Sexuality from Three Unique Viewpoints”

In addition to the webinars they have some general “fact sheet” style info that might be helpful on topics such as dating, marriage, divorce, relationships, sexuality, parenting, and friendships.  These include general information as well as parent tips.

I was really impressed by the quality and quantity of ASD related resources on a variety of topics so it’s a good one to have in your tool belt.

I just wanted to link to one other power point presentation that I thought had a lot of good information.  “Sexuality & Sexuality Instruction with Learners with Autism Spectrum Disorders and Other Developmental Disabilities” by Peter F. Gerhardt, Ed.D., Director The McCarton Upper School

Gender Identity and Disability

During the workshop we talk a little bit about gender identity and gender fluidity but I thought it might make sense to talk about this topic more in depth.  Parks, Hall, and Taylor* looked at gender dysphoria (discontent with with biological sex) with individuals with cognitive disabilities and suggest “Developing a gender dysphoria or wanting to cross-dress usually has ramifications for the person’s family and social network, perhaps more so with people with intellectual disability, who may be more dependent on family and paid caregivers and have less choice about who is in their network. They may experience more hostility and gain less appropriate support from their network.”  But there is still very little information about how common it is, why for some individuals gender is more fluid (have a wide flexible range of gender expression), and how best to support individuals with disabilities with issues related to gender.   This topic also raises issues related to guardianship and self determination.  Some individuals start going on puberty suppressants and hormone replacement starting in adolescence so their bodies can match the gender they express and the gender they identify with.  For people with disabilities, who gets to make that choice?

Could having a developmental disability lead to difficulties with gender identity?

This is a little difficult to answer.  There are very few studies ask this question.  In Holland they looked at co-morbidity of ASD and gender disorders * and did find more individuals with ASD coming to their clinic then you would expect.  However individuals with ASD may be tapped into to services which might account for this difference.  When individuals with disabilities seek support they may be unable to give an accurate history and professionals in this area may be unfamiliar with working with people with disabilities which could lead to false impressions.

Given how little is known, where can I go for more information?

There are new clinical guidelines that address how clinicians should assess and support individuals with autism and persistent gender dysphoria. The new clinical guidelines (there haven’t been any in the past) affirm the right of individuals with autism to obtain gender realignment. It also affirms that many individuals with autism experience gender outside the male-female binary. Check out a reader friendly overview of the guidelines on Spectrum News.

Gender Spectrum is a great place to start looking for more information.  This is a website that can link families with medical, mental health, social, and legal services.  The have great definitions of all the different terminology and a great overview of gender development.

Here is also a This American Life podcast that features interviews with two little girls who were born as biological males and their families.  For me, it was really eye opening and helped me connect this topic to real people.

On May 19th the Washington Post published an article on this topic (which I thought was really well done) featuring a little boy named Tyler.  The story had almost 2,500 comments 5 days later.  They published a follow up article about the response on May 21st, “I heard from transgendered senior citizens who lamented their decades living a lie.  I got e-mails from confused parents who had their aha moment when they read Tyler’s story.  And sure, I heard from the haters”.  This article not only has nice information but also speaks to the relevance and controversy surrounding this topic.

*This links to the abstract of the article.  Unfortunately, the full text of the article is not available for free online.

Implementing Sexuality Education

When you think about implementing sexuality education, it is important to think of what your agency is already doing because it is often easier to build on something than to start from scratch.

I’m going to present a model for one approach for implementing sexuality education at the agency level.  This isn’t the only way to do this, but rather a suggestion of one path that I have found to be successful. Your agency may already have completed some phases or find some phases to be unnecessary.

Phase I: Start a committee- bring together a few people who are interested in topics of human sexuality and willing to do some of this work.

Phase II: Draft a sexuality policy- this will serve as a foundation the committee’s path.

Phase III: Invest in curriculum and teaching materials-  you don’t need much to start out with, but I think it’s helpful to have something and you can always add later.  Having said that, I’ve never come across anything that didn’t need some adaptation.

Phase IV: Start thinking about who you want to target and how- do you want to do small groups or individual education?  Who is going actually implement the education and what support do they need (training, regular meetings to process how it’s going)?  What will your process be for getting individuals receiving services involved?  (I’ve attached a sample Referral Form).

Phase V: Start Implementing!

Phase VI: Expand and Revise- self advocates, expanding curriculum, increasing training for all employees…there’s so many interesting and fun places you can go.

You may be saying to yourself, “this is great, but I’m not really in a position to implement agency wide change where I work”.  Here are some questions to ask yourself in regards to what you can do at a personal level.

  • Where could I fit in with what my agency is already doing?
  • How can I reinforce and incorporate human sexuality concepts into my everyday interactions?
  • How can I incorporate human sexuality concepts into programing?
  • What can I do to advocate for human sexuality education?

Supporting People with Disabilities with BEING Sexuality Educators

What does supporting people with disabilities with BEING sexuality educators?

It’s all about self-advocacy!

According to SDC (UIC’s Institute on Disability and Human Development and their Sexuality and Disability Consortium (SDC), “Sexual Self-Advocacy means: People with disabilities taking control of their own sexuality by making their own decisions and speaking up for themselves and others about sexuality.”

As sexuality educators, individuals with disabilities can be…

  • Safe people for their friends to talk to
  • Knowledgeable sources of information
  • Leaders and co-leaders in educational sessions
  • Models of healthy sexual relationships
  • Advocates for raising awareness about sexuality topics
  • Fill in the blank ____________

This is a great webinar to learn more about how to advance sexual self-advocacy for people with disabilities.

Another great resource for learning more about sexual self-advocacy is  The Green Mountain Self-Advocates.  They have developed materials for self-advocates interested in teach human sexuality (as well as many other topics).

SDC recommends the Developmental Disabilities and Sexuality Curriculum which has a self-advocacy component built in.

A Thinking Person’s Guide to Autism

“A Thinking Person’s Guide to Autism” is a wonderful resource and online community.  They have a blog, facebook page, and book so you can check them out in what ever way is most comfortable to you.  Although they deal with many topics related to Autism Spectrum Disorders, they often touch on topics of sexuality.

I especially would recommend checking out this post, “Talking About Sex with Young Adults with Autism”  Here’s an excerpt.

“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”

“Did Amy want to go in her room with you and shut the door?”

“Not really. So we went outside and the parents kept watching us.”

“Did Amy want to be alone with you outside?”

“I’m not sure.”

“Did you touch Amy?”

“I wanted to. I wanted her to lie down on the grass so we could do sex.”

“Have you ever had sex with anyone else?”

“Probably not.”