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Friday, 23 May 2014

The TALK-SC: Sex Education for People with Intellectual Disabilities

In a discussion with friends that came up after I published the posts about Judge Christopher McFadden and his ruling on a case involving the rape of a young woman with Down Syndrome, questions came up about whether she could really consent to sex in the first place.

"Depends on the person," I said. "It gets complicated."

I didn't go into it any further because it *is* complicated, and having to talk about the issues involved with sex and sexual consent in adults with intellectual disabilities is something that's still relatively new for the field. Society tends to treat adults with intellectual disabilities like they're children, forgetting that they're sexual beings with adult sex drives and the same desires as most people to be in romantic relationships. Changes in how we view the rights and responsibilities of adults with intellectual disabilities, and increased opportunities for community involvement and interaction with others, have given them opportunities to explore the world of romantic and sexual relationships that previously weren't available to them...but have created a need that historically hasn't been there for education and safety training.

With so many differing attitude in society regarding sexuality, confusion about it among people not facing the challenges associated with an intellectual disability, and discomfort about talking about it general, it's no wonder that people with intellectual disabilities don't get information about relationships and safe sexuality that they need and are entitled to.

Which is why I was so excited to hear that disability advocate Dave Hingsburger and a team of of professionals who have worked closely with people with intellectual disabilities in the area of sexuality had developed an assessment that could either be used to determine in what areas an individual needs education about sexuality (and to assess how effective that education was), or to determine (with an appropriate professional's assistance) whether a person can legally consent to a sexual relationship. It's called the TALK-SC.

I was very excited to see the TALK-SC. I've talked before about how I've had to work with individuals to assess their level of knowledge around sex and sexual safety. Getting the required information without prompting or putting words in someone's mouth is tricky.

I asked Dave if I could blog about the TALK-SC. I really like it, for several reasons:

1. The Person Being Assessed Has to Consent to Having the TALK-SC Done, and Can Revoke the Consent at Any Time

The assessment instructions make it clear that the person is at the centre of this. They are to be informed about what the assessment will be used for, the benefits and risks of taking it (especially in the Consent context, which could result in them not being able to have sex until getting education in some areas of need identified by the TALK-SC; I don't know enough about this area of support to know how this would be enforced), what they'll be talking about, who else the assessor will be talking to, and that they can revoke consent at any time. The materials explaining the TALK-SC to the person being assessed, and the consent forms, are wonderfully plain-language. The consent forms in particular are among the best that I've seen.

2. The Must-Pass Questions Get to the Core of the Issues

In order to pass for Consent purposes, 6 questions have to be answered correctly, and they nicely get to the heart of the issues around public and private behaviour, consent and safety:

1. a) If someone asks you to take your clothes off do you have to?  b) Why would a doctor ask you to take off your clothes?

2. Two people are having sex. What are their bodies doing?

3. A person wants to have sex with their partner and the partner does not want to.  What are their choices?

4. You are making out (kissing and touching) with your partner, they ask you if they can touch your penis/vulva ("vagina" can be substituted) and you say yes. When they start, you get uncomfortable, can you still say no?

5. You are on the bus and your crotch is itchy, is it okay to pull your pants down to scratch it?  Why or why not?

6. You see someone really sexy in the park and you decide to go to the bushes and start to masturbate. Is this okay? What can happen to you?

These questions are part of the 5 scored modules in the TALK-C. The person must get a 70% score in each TALK-SC module to be deemed to have enough of an understanding of the issues surrounding sexuality to be able to consent to sex.

3. Professionals Are Involved

While a support person (preferably with another support person present) can administer the pre-test portion of the TALK-SC that's designed to assess a person's level of knowledge, the post-test (whether it's being given as part of the process to assess ability to give informed consent, or to re-test knowledge after training) is given by a clinician or someone with experience with sexuality in people with intellectual disabilities.

Thank goodness...especially regarding the consent issue.

I probably could handle giving the TALK-SC, but making the actual ruling on consent isn't something that someone without considerable knowledge and experience should be doing (my opinion). And it's much more influence that I personally care to have over anyone's life, quite frankly. I'm all for keeping people safe, but I have a healthy sense of when something's outside my knowledge level and skill set, and I don't like to stretch very far when other people are involved.

Which is why I overcame my initial resistance to the idea that, when conducted to investigate ability to consent, a information-gathering interview is also done with someone close to the person being assessed. I generally don't like the use of interviews about a person where they are not present as a means of gathering information, although I do recognize that sometimes there is no other alternative. The TALK-SC instructs that the person is to be made aware that this is going to happen, they're told about the questions that the person will be asked, and can stop the assessment if they're uncomfortable with an interview being done with others at which they're not present, so this is really done as ethically as it can be (again, my opinion). And for a decision with potentially far-reaching implications for a person's life, it makes sense to get as much information about a person's level of insight about sexuality as possible. Ultimately the ruling around consent is about keeping people safe.

4. Even a Finding That a Person Can't Consent is Treated as Temporary

The TALK-SC definitely allows for the possibility that people may be found to be in a position where they have to be told that they can't have sex. However, the TALK-SC is also very firm that this circumstance is to be treated as temporary, pending appropriate education, and that a prohibition on having sex does not mean that a person cannot be in a relationship and hold hands, kiss, etc. It assumes the best in people, and assumes that people can learn and grow. Any sort of support for people with intellectual disabilities should be making these assumptions.

The Importance of Tools Like the TALK-SC

As I said at the beginning of this entry (and as I've said several times already in this blog), people with intellectual disabilities have the right to be in romantic relationships and the right to high-quality education about all aspects of being in a romantic relationship, including sexuality and sexual safety. This is a great step forward in that area.

I would assume that any sort of assessment that comes from a team involving Dave Hingsburger would have these assumptions at the centre of it, and be firmly rooted in compassion and deep respect for the people for whom it was developed. The TALK-SC exceeded my expectations. When I first heard about it, I thought, "It's Dave, so I'm sure it's going to be great, but I have no idea how he's going to pull it off," and I really am impressed by what he and the team have come up with. It is being offered to agencies and advocates free of charge. If you'd like to receive a copy, email Dave Hingsburger at dhingsburger@vitacls.org.

The TALK-SC was developed by Dave Hingsburger, K. Beattie, T. Charbonneau, J. Hoath, S. Ioannou, S. King, S. Loftman, L. Lynn, K. Miller, M. Mudunuru, C. Outhwaite-Salmon, and S. Woodhead, with support from MacKenzie Health, Vita Community Living Services, Angie Nethercott, Patty Barnes and and Joe Jobes.

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