Sex Ed Series Module 8: Partnering with Parents, Families and Guardians to Support Sex Education
Length * 1:08:57
Speakers (in order of appearance)
Linda Sandman, Curtis Harris, Teresa Parks, Rocio Perez
Linda Sandman 00:02
Welcome to the eighth module in the training series "What's Right about Sex Ed". This series is designed to help you and others in your organization provide sexuality education to individuals with intellectual and developmental disabilities. The title of this module is "Partnering with Parents, Families and Guardians to Support Sex Education".
00:32
This training, and the other modules in the "What's Right about Sex Ed" series are being brought to you by Blue Tower Solutions, Incorporated, and the Illinois Council on Developmental Disabilities. Blue Tower Solutions is a nonprofit organization that works to empower individuals, organizations and systems to create cultures of respect, inclusion, dignity, and equality for people with disabilities. The Illinois Council on Developmental Disabilities' mission is to help lead change in Illinois so all people with developmental disabilities exercise their right to equal opportunity and freedom.
01:20
The Train the Trainer series on sex education, "What's Right about Sex Ed" contains eight modules. These modules cover a range of topics. We have reviewed basic information about the law in Module one and provided an in-depth look at the sexual rights of people with intellectual and developmental disabilities (Module two). Modules three and four addressed how to be a sexuality educator, including the qualities of a good sex educator, and strategies to use in sex education for people with intellectual and developmental disabilities. Module five focused on providing trauma-informed sex education. And Module six walked you through some sample scenarios and gave you tools to build a sex ed program that will best fit the individual's interests and needs. Module seven continued that work by providing guidance on how to create an inclusive sex education program, so that everyone can feel there is a place for them in the sex education meetings. This Module, number eight, is the final module in the series. We will talk about why it is important to engage parents and family members to support the sex education plan and look at strategies for how to do that.
Throughout all the modules, we have invited a diverse range of expert speakers, including self-advocates to present the information. All trainings are posted to the Department of Human Services Developmental Disability Provider Training platform, so they can be viewed as often as needed. My contact information is posted at the end of each training module, if you have any questions.
Linda Sandman 03:21
So now, let's get to know the presenters for this module. We're delighted to have Curtis Harris, Teresa Parks and Rocio Perez join us for this presentation today. Curtis, would you like to introduce yourself?
Curtis Harris 03:36
Yes, I'm a person who's - who has a disability of autism spectrum disorder. I'm a self-advocate. I'm a volunteer to Access Living. I'm a longtime advocate for people with disabilities and for myself. Teresa -
Teresa Parks 03:53
Thank you, Curtis. My name is Teresa Parks. I am parent and guardian for an adult with disabilities. I also work for the Illinois Guardianship and Advocacy Commission. Rocio -
Rocio Perez 04:08
Thank you, Teresa. Hi, my name is Rocio Perez. I'm the parent and guardian of a young adult with autism. I am also bilingual/bicultural, and I am a social worker by background. And I currently work for the Arc of Illinois.
Linda Sandman 04:24
Thank you so much for Rocio. And for myself, Linda Sandman, my pronouns are she/her. I am a social worker and I work with Blue Tower Solutions. In addition, I am also bilingual and bicultural - bilingual in English and Spanish. Working with and learning from parents and families has been an important part of my work over many years. Together with a colleague, I helped create a workshop curriculum called Home B.A.S.E. to help parents feel more confident and comfortable talking about sexuality with their adolescent and adult children with intellectual and developmental disabilities. I've really been looking forward to this module of the Train-the-Trainer series, and I'm especially grateful to Curtis Harris, Teresa Parks and Rocio Perez for being here today. I hope you will enjoy learning from them too.
Today's training includes two handouts. One handout is called Module Eight Planning Tool. This module has an activity for you and then on the second page includes links for a number of resources that will be mentioned during the training today. The second handout is called the Presenter Bios and will give you more information about each of the presenters that you're meeting today.
Linda Sandman 05:53
I imagine many of you have been wondering about the role parents and families can play in the sex education program. Maybe you have already been hearing from many families asking questions or expressing concerns. We're going to start this presentation by looking at the parent and family role from a variety of perspectives, including when the parent is the legally appointed guardian.
06:26
Most parents and family members believe sex education is important and needed. The word I want to emphasize here is most - not all, but most. I think this is an important mindset to keep in mind. Parents and families can be tremendous allies in the effort to provide sex education to individuals with IDD. Research in this area, as well as my own experience over the past 10 years or so, indicate that parents and families recognize this is an important topic that needs to be addressed. But many lack confidence in knowing how to approach the topic. They don't know how to talk about it. When should they bring it up? What should they be talking about? Should they wait until their family member with a disability brings up questions or becomes involved in some type of sexual activity? Should they take the initiative and bring up the subject first? And if they do decide to begin the conversation about sexuality and healthy relationships, where do they find the resources - accessible, adapted resources to support and help them?
It's not uncommon that parents and families end up avoiding the topic or shutting down the conversation because they simply don't know how to go about it. Or they're afraid that their loved one will get involved in some type of behavior that could result in harm.
To start us off on this topic, let's hear from Curtis
Curtis Harris 08:19
As a person growing up with developmental disability of autism, I had to find out on my own because my father and family wouldn't talk to me about sex education. Nor would the Chicago Public School system teach students about sex education because of low expectations that they place upon us.
And so, I had to learn the hard way and got in trouble - when I went up there and asked a lady in the severe profound program for students with autism, developmental disabilities and learning disabilities, I asked her - I liked her, I asked her if I could sex with you, and she said no because she didn't want to have a baby. Well, I learned last week was that, from Linda, was that her parents didn't teach her about birth control, or to take birth control pills - because they don't do that, like they should. Or you got ladies that don't wanna have sex now, because there's fear of getting pregnant, through no fault of their own.
Linda Sandman 09:35
Curtis, can I ask you a question?
Curtis Harris 09:39
Sure.
Linda Sandman 09:40
Do you think that people with disabilities can choose the type of sex education that they want to receive?
Curtis Harris 09:48
If given to them, yes.
Linda Sandman 09:50
And do you think that people with disabilities can help teach sex education?
Curtis Harris 09:58
Yes - if given the right tools.
Linda Sandman 10:00
Yeah, absolutely.
Great. Thank you so much for sharing, you know, some of your experience and some of your thoughts. Let's hear from some parents now.
Rocio Perez 10:17
Thank you, Curtis. Hi, my name is Rocio. And to be honest, I've been somewhat reluctant on this issue of sex education. Culturally, it's not something that I'm very comfortable with. I'm a first generation Mexican American and talking about sex or having - you're talking to your own children about sex; it's not something that's very comfortable and almost taboo. But I think it is important.
And I also think that we're more comfortable talking about specific situations, such as "My daughter, you know, wants to have a boyfriend", or "My son is, you know, is masturbating." "What can I do about that?" That has been approached to me both professionally, as well as personally.
And I think that perhaps, you know, sometimes it's the titling. Sometimes it's giving us the information in our native language. I am bilingual, however, many parents who speak Spanish would want to see the information developed in Spanish and given to them to review, so that they would feel more comfortable.
Also, in the past, my son did, there was a young woman and he wanted to hold their hand, but the school discouraged it. And so, it's kind of - there's a, it's a confusing message sometimes when we talk about what can you do, what can you not do in different situations, when you're in school, and then when you're out of school.
I think empowering parents and empowering the person with the disability would make this a more comfortable situation and be, in terms of their safety, something that is definitely worth the benefit.
Thank you.
Teresa Parks 12:07
Hi, my name is Teresa Parks. And, in this picture, you see my handsome son, Nathan.
I am Nathan's parent, of course, as well as his guardian. And, on even though I am his guardian, I have still always included him in decisions, as much as possible, to the extent that he's able. And that includes his participation in IEP meetings in the past, in goal planning now, and decisions. And in spite of the guardianship, Nathan makes many of his own day to day decisions and choices. We pull the guardianship card most often for medical issues, I would say. We have found over the course of his life that he has not typically relayed when something is off or when something feels wrong, until we observe a change in him. And by that time, he may need prompt medical care and attention. Also, we do most of his financial management because that really is an area he has shown no interest in whatsoever.
With regard to sexual expression and sex education, we certainly have always wanted him to have and enjoy the full human experience, as much as he safely can and as much as he is interested. We wanted him to have access to sex education in school, as well as related health courses in school. And we had to advocate for his participation in general ed, sex ed, as well as health classes, as I'm not sure he would have gotten that kind of coursework or education through the special education program. But to my knowledge, even though he had access to that sex education and health coursework, I do not believe any of the materials were modified for his unique needs. So, I'm not 100% sure the extent to which he got information out of that. However, when he was in high school, he was participating in somewhat of a Co-Op program, where he attended school and classes in the morning, and in the afternoon, he had a community work opportunity. And during that, the first years of that, or at least the first year, he started having some incidents of inappropriately touching himself at the community work setting and of course, as parents we became very concerned. We were concerned about him being labeled in a negative way, such as a predator or displaying deviant behavior. And of course, we were also concerned about his jeopardizing his community work opportunity that we worked so hard to help coordinate with him and facilitate.
But I have to say that the IEP team pulled together. And we were all wanting to make this work for him and continue this community work opportunity. So, we kind of went into like a problem solving, brainstorming mode, and decided that he needed some very targeted sex education. And the school social worker got involved. And she developed, and then worked with him on social stories. And then we also implemented a mild physical barrier, kind of as a prompt and a barrier, in the form of a work apron. And between these two modes of education, it really took care of the concerns. And I'm proud to say that Nathan continues to have this community work, job situation to this day.
And in general, I would just say, to this day, Nathan expresses himself sexually and in an appropriate way that appears to meet his needs and his interests at this time. Thank you.
Linda Sandman 16:34
Well, I really want to thank Curtis, and Rocio and Teresa for sharing so much of their experiences and stories. This is what I meant when I said we're going to learn from some experts. So, thank you very much.
16:49
So, let's turn now to think about what does the law in Illinois say, Public Act 101-0506? You can see here on the slide some text that's come straight from the law:
The person's decision-making capacity to consent to sexual activity, and the developmentally appropriate sex education, materials and resources shall be determined by the treatment team that includes the individual professionals who have knowledge of the individual and the individuals guardian, if appointed.
So, I put the bold lettering on this selection of the text from the law. And what we really learn from this sentence is:
the guardian is a member of the educational planning team and
the guardian can play a role in determining the developmentally appropriate sex education, materials, and resources.
17:59
The language in the law goes on to state more about the guardian's role.
"The guardian's decision making, shall conform to the court ordered appointment and the standards of decision making established by the probate act."
Lots of big words here.
Because guardianship is a legal relationship, there is a court order that describes that relationship. And there is language about how the guardian is to make decisions, according to the law. In the next three slides, we'll look more closely at what that means. Teresa -
Teresa Parks 18:44
Thank you, Linda. As Linda stated, the guardian must be a part of the educational planning team.
Some questions though, you might have regarding their involvement might include:
Does the guardian have the final say when it comes to sex education?
Does the guardian's position, their decision weigh more than the individual or weigh more than the professionals who work with the individual?
Does the guardian have some kind of ultimate veto power?
And how are disagreements settled if there's conflict between the guardian and the person with a disability?
And are all guardianships the same?
The next slide will give us some more information about guardianship.]
Teresa Parks 19:40
First of all, as Linda stated, a guardian must have gone through a court proceeding in order to officially be the guardian. I have heard of situations where a parent thinks that when their child turns 18, they're automatically the guardian. That is not the case. It is a legal relationship, and they must take the matter to court, a probate court and be appointed by a judge.
And there are pieces of paper that document their official role as a guardian, and they should produce those for a service provider involved in the person's care. The paperwork might include a court order, and something else called Letters of Office. The end of it, the guardian should produce that paperwork and it should show within that paperwork, the type of guardianship, as well as the authority of the guardian.
In your information, the Planning Tool that accompanies this webinar, there is a link to guardianship resources, and I encourage you to take a look at that. Under the law, the Illinois Probate Act, which is the basic law that governs guardians, there are different types of guardianships.
There's something called a limited guardianship. This means that the guardian only has authority only over a very specific area of an individual's life. It might just be for medical decisions. It might just be for residential placement. But a limited guardianship does not constitute legal incompetence under the law. So that individual would still have decision making authority in every other area of their life, other than the one area stipulated in the court order.
Then there's something called a temporary guardianship, and this is usually used at times of crisis. Someone ends up in the hospital emergency room. They're incapacitated, they cannot make a decision for themselves, and they need some kind of emergency medical treatment. And the hospital can't find a surrogate to step in and help with decision making under the Health Care Surrogate Act. So sometimes a hospital attorney will go into court and have a temporary guardian appointed. That temporary guardianship is very specific to whatever that person needs at that moment, and it's only good for 60 days, then it expires, unless someone goes back into court to have a permanent guardian appointed.
Then there's something called guardianship of estate. And that type of guardianship only handles financial matters. And guardianship of the person - they would only handle personal issues: medical care placement, vocational, only personal things, nothing financial.
Then you have something called plenary. The word "plenary" means full guardianship versus limited guardianship. So, some examples you might see on a court order or letters of office might be plenary guardian of the person, or plenary guardian of the estate, or plenary guardian of the person and estate.
Teresa Parks 23:38
And then of course, there the, there's the option of limited guardianship. There are a couple other types, of unique types of guardianship in the law. One is called the standby guardian. This is where, when a current guardian identifies someone to be subsequent guardian in a will. And there's something called a short-term guardianship where maybe the, the current guardian is temporarily going to be unavailable, unavailable, either maybe out of the country, or maybe they're going to be incapacitated due to some surgery; they might identify someone to step in temporarily, that's called a standby guardian.
But as Linda stated, a guardianship is different than being a parent. It is a legal relationship and guardians must follow the law, the Illinois Probate Act, and that includes when making decisions. Next slide, please.
24:24
Under the law, there are two different types of decision-making standards that guardians must follow. The first one that they must always try first is called "substituted judgment". This means that the guardian substitutes the person's preferences. They ascertain and consider and act on that individual's preferences, current or previously stated preferences, as long as those preferences do not put the individual in harm's way.
If the guardian cannot ascertain an individual's preferences, then they can make decisions based on the "best interest" standards. And that means what is in the best interest of the individual. And the guardian should take into account, under the law, decisions that would maximize that individual's independence, their self-reliance, as well as what would be the less restrictive approach in serving that individual.
On the department's website, you will find a Guardianship Factsheet that you can take a look at. You can also go to our agency's website, the Guardianship and Advocacy Commission website, and we have guardian information as well. We also have a Guardian Training module for newly appointed guardians or any guardian. This is now the law that any newly appointed guardian must take this training that we offer, unless waived by the judge, or unless they identify some other guardian training resource. But anyone can take that training. And that training goes into detail about the guardian role, their duties, as well as their limitations.
With regard to disagreements with guardians or between guardians and the person for whom they're guardian of, I would encourage service providers to talk directly to the guardians about these differences and disagreements. There may be a need to address the disagreements with the entire team, the educational planning team. It may be necessary to go externally and get an advocate involved - maybe the ISC agency, the Independent Service Coordinating -Coordination Agency, and it may be necessary to involve an advocacy agency like Equip for Equality. If nothing works, and the disagreement continues, and there doesn't seem to be any resolution, there's also the action of going back to court and letting a judge decide the final outcome in a situation. Again, there's a link to guardianship resources in the Planning Tool, on page two. Thank you.
Linda Sandman 27:24
Let's hear a little more from Curtis, who's going to talk about his perspective on the family role.
Curtis Harris 27:32
Yeah, I wasn't taught about sex education. As I was saying earlier, is that - this is where parents and educators come in and you need to teach them. You say, "we're going to teach you about how to do things in a safe way." But they rarely do it.
Instead, I have to learn on my own about what to do and what not to do. Like I was told by peers to touch a woman's breast, behind - or butt. Then asked her could I have sex with her? Asked her could I do sexual roles? And she was saying I was being taken advantage of by peers and got in trouble. I also made, showed up with a woman to have sex with her, which I didn't, and I got in trouble.
So, I was in that environment where I wasn't taught anything. I was in that environment where you're exposed to things, where you're supposed to know about sex. You're supposed to know different things about sex. And people telling you to ask them about - take - asking a girl to go out with you, or to have sex is not your friend.
Linda Sandman 28:49
Curtis, can I ask you a question?
Curtis Harris 28:52
Yes.
Linda Sandman 28:53
So, what do you think families can do to support sex education for their adult children with disabilities?
Curtis Harris 29:03
Encourage - parents are encourage their children to go to sex education, encourage them to have safe sex, - like wear a condom. If you're a woman, take birth control pills, if you don't want to have children right now, because you're not that right maturity age to have children.
Linda Sandman 29:30
Can I ask you another question?
Curtis Harris 29:32
Yes.
Linda Sandman 29:33
So, what do you think providers can do to help parents and families support sex education?
Curtis Harris 29:47
They are supported by telling, telling the school official that - that they are teaching sex education.
Linda Sandman 29:56
So good communication.
Curtis Harris 29:58
Yes.
Linda Sandman 30:00
Good communication is important. Yeah.
What would you like to tell disability service providers about including people with disabilities as leaders in, in providing sex education?
Curtis Harris 30:11
I will say that people with disabilities are no different than those without disabilities. And they have the right to have a sexual relationship, and a healthy, safe - safe sex relationships.
Linda Sandman 30:24
That's great. Curtis, thank you so much for sharing your perspective. Let's hear a little bit more from Teresa.
Teresa Parks 30:36
Thank you, Linda. As a parent and a guardian, I'd expect to be part of the planning - in fact, as a guardian, I would have to be involved in the planning. As a parent, I'd still like to be involved. I want to be informed, have information about the sex education curriculum and the approaches that the provider is considering using. But I can also be a resource - I can be a resource about my child, my adult child's experience. I can provide the, the service provider with information about how my adult child best learns, the approaches that work for him, how he interacts, maybe some past history, history about relationships, or his past education in sex ed, and maybe even past experiences that might impact the learning process, and also materials - materials that seem to work for him in terms of education.
Teresa Parks 31:48
As a parent, I'd also want to have just a general understanding of the curricula. And I'd want to make sure that some key topics are covered. For example, I would certainly want safety, the safety topic to be covered, as well as appropriate interactions in relationships, so that hopefully my son would not find himself in a challenging situation. The next slide, I want to share something new that is in place in Illinois.
32:17
As of February, it's actually effective February of 2022, and that's called supported decision making. And it applies specifically and only to adults with intellectual and developmental disabilities. And it's called the Supported Decision-making Act. And it allows for a less restrictive alternative to guardianship for adults with intellectual and developmental disabilities, who just need a little bit of assistance with decisions. And in this scenario, the person with the disability identifies a supporter - it might be a family member, a parent, a sibling, it might be a family friend; but that supporter must be an adult. And there are certain prohibitions as types of people who cannot be supporters. For example, someone who works for a service provider or provides care and services to an individual cannot be a supporter unless they're a family member. But staff of facilities or agencies cannot be supporters for individuals.
But the identified supporter then assists the individual in certain areas of that individual's life. And the individual chooses which areas they want assistance with. It might be with living arrangements. It might be with medical or health care decisions, or vocational or work arrangements, or relationships. The support arrangements are documented into an agreement called a "supported decision-making agreement". And some of the things that the supporter might do, might be: help gather information related to a decision; maybe review that information directly with the person with disabilities; maybe even advocating or helping the individual advocate for their decisions. But it's very important to note that under the Supportive Decision-making Act, the person with the disability still makes all the final decisions.
We do have information available on the Guardianship and Advocacy Commission's website, including training for supporters, for persons with disabilities, and a sample "supported decision-making agreement". Thank you.
Rocio Perez 34:56
Thank you, Teresa. Now let's talk about some of the benefits of involving parents and family in sex education. Next slide please.
35:06
Parents can reflect the values of the family and the culture that they represent. Parents may already be engaged in providing some type of sex education. For example, knowing privacy, closing the door, having a safe space. Parents also know how their loved ones know best and individualize the instructions, such as learning some of the words that they also show their children - what to use, that they understand. And as Kim Johnson, the parent of a young adult with autism says, "We are the continuing education teachers for our children." We don't just say, "See you later, at two o'clock." We're there 24/7. Next slide, please.
Rocio Perez 35:52
Here's some suggestions for engaging the parents and family. Give the information and the guides in their native language, or maybe find some ways of explaining it to them in words that they understand. Have a meeting with the parents and the individual with the intellectual disability to explain how this, the curriculum, will fold out, how much time it will take. And you know, just explain, you know, more fully and answer all the questions that they may have. Seek out someone that the persons may trust - and, usually, that tends to be the respite worker, because it's someone that they see on an ongoing basis. Talk about the effectiveness of the trainings have on reducing the risk of abuse and/or empowering the person with IDD. One other suggestion that I would like to add is that maybe having them talk to a family that already has had their son or daughter go through the training, and they could explain the benefits of this curriculum. Next slide, please.
Linda Sandman 37:01
Thank you so much, Curtis and Teresa and Rocio for sharing so many great ideas and suggestions.
In each module of the Train-the-Trainer series, we have included examples from the approved curricula and resources to directly show how the curricula can support the work that you're doing. Let's take a look at how the approved curricula addresses engaging parents and families in supporting the sex education plan.
37:41
Illinois Imagines is one of the approved curricula. Along with the Sex Education Guide and Picture Supplement Guide, which contains the curriculum lessons, the Illinois imagines Project produced a Guide for Parents and Guardians, along with a Facilitator Guide. They are listed as Modules five and six on the Illinois Imagines website, that's located on the Illinois Coalition Against Sexual Assault website. Under the Illinois Imagines Toolkit materials, you can find the listings for Modules five and six. And we've also included the link on the second page of the Planning Tool handout that goes with this presentation.
The Guide for Parents and Guardians is available in both English and Spanish and can be used by parents and families on their own or can be used alongside the sexuality education program of the toolkit. Module six is the Facilitator's Guide, which was designed to support the providers in using the Parent Guide. All of this can be downloaded for free from the Illinois Imagines website. There may even be some hard copies available of the Parent Guide in English and Spanish. If you contact ICASA, the Illinois Coalition Against Sexual Assault directly.
Linda Sandman 39:07
At the beginning of the Guide, there is a statement about its purpose:
Parents and guardians are key to the work of preventing sexual violence against people with disabilities. As a parent or guardian, you are in an ideal position to educate and support the education of loved ones in relation to healthy sexuality, sexual rights and sexual violence prevention and safety planning."
I think that's such a great statement. Right? Parents are essential. Inside the Guide, there is background information on sex education and sexual violence prevention, including a look at myths and facts about sexuality and people with disabilities. And there's an excellent listing of sexual rights and responsibilities. Sections two and three of the Guide covers strategies for talking about sexuality and how to support sexuality education. And then section four contains specific information about the sex education curriculum that was developed by Illinois Imagines, so that the parents and families can stay informed. Each lesson is summarized and then there are tips for how the parent can reinforce the lesson. The Guide also includes resources for parents, guardians, and families to learn more.
40:41
These next two slides are going to show you some of the content contained in this Guide for Parents and Guardians from the Illinois Imagines curriculum, as well as the Facilitator's Guide. On this slide, you can see an excerpt from section two of the Parent Guide, which is titled "Prepare Yourself: Supporting Sexuality and Sexual Violence Prevention Education for Your Loved Ones." So, one of the pages says: "How should parents approach sexuality education?" And then it tells you:
Provide correct information. Answer questions honestly and use words they (regardless of age) can understand. Share your beliefs, values, and concerns. They need to know where you, the parent stands. And help them make good decisions and know how to stand by those decisions.
I think that the points made on this slide, go a long way to answering the questions we asked at the beginning of this training - that parents often struggle with: how to bring things up, when to bring things up, what should they be talking about, and where can they find those resources?
42:03
In the Illinois Imagines Facilitator Guide, the first 10 pages gives suggestions for how facilitators can use the Parent Guide. This is specifically for providers. The rest of the Facilitator's Guide then just includes the same information found in the Parent Guide. So, at the beginning, under the heading "Facilitator Materials", it says:
If you are using the "Our Rights, Right Now," the sex education curriculum, this Guide is a great accompaniment. As you begin to conduct the sex education sessions with people with disabilities, sharing information with parents and guardians is essential. This may occur in an information session, individual conversations or correspondence with parents and guardians. Ideally, you will schedule an education session with parents and guardians. However, this communication occurs, be aware that engaging parents and guardians is key. Parents and guardians need to know how to reinforce the sex education and violence prevention provided to people with disabilities. They are central role models, teachers, and responders to their children's needs, and you can support them in those roles.
The Facilitator's Guide includes a sample letter that can be sent to parents and families along with an agenda for an education session for the parents and families.
In addition, the Facilitator Guide addresses how you can approach a parent or guardian who is reluctant to agree to the sex education plan. I put that section up here on this slide.
When a parent or guardian says no to prevention -
Step one: Find out what is behind the "No."
Step two: Try to understand the concern.
And Step three: Provide empathy and factual information.
This is great advice. The Guide reminds us it can be useful to learn more about the parent and family member or guardian's concerns. Take the opportunity to provide more information about the educational plan and work together to address the concerns. The Guide even models things that you can say for particular concerns that may be raised by providing examples of conversations and responses.
I think Teresa provided such a great example earlier, of how parents and guardians can work together with the team to address specific kinds of concerns and questions.
Linda Sandman 45:02
Now let's look at another one of the approved curricula. The Friendships and Dating Program is from Alaska. In this curriculum, there is a separate Training Guide that accompanies the Curriculum. In Section six of that Training Guide, it's dedicated to the inclusion of the individual's Support Network. And it states: "The Friendships and Dating Program encourages communication and support from participants, facilitators, and support network individuals."
So, collaboration and working together. The support network can be made up of individuals who provide a significant amount of support in a participant's life, including the parents, family members and other caregivers. Section six of the Training Guide includes an outline or an agenda for a Support Network Orientation Meeting, as well as the Orientation Packet with the materials that you will need for the meeting. So again, a similar idea to what the Illinois Imagines program does, kind of an orientation or information session to go along with the rollout of the sex education program.
Support Network members are invited to an orientation meeting prior to the program beginning. The meeting is so important, they recommend it be mandatory, emphasizing:
"The information that family members receive during the orientation is important, so they can fully support the individual over the course of the program. If a support network member is unable to attend the orientation, schedule time with them to review the materials and the expectations discussed during the orientation."
Linda Sandman 46:54
The Friendships and Dating Program also uses a Weekly Information Sheet. We talked about the Weekly Information Sheet in Module five on Trauma-informed Sexuality Education as being an important tool for collaboration. The outline for the Weekly Information Sheet stays consistent over the course of the sex education program. The section, the session objectives are listed; the community activity is explained along with any necessary details; and then there is a section on ways to support participants, including questions that the parent or family member can ask about each session. A contact person is always included on each weekly information sheet.
47:47
So, let's look a little more closely at some of the content in the Orientation Session. First, the Orientation Session provides an overview of the sex education curricula and the format that will be used. There are some joint activities that can help the families and the individual support network members get to know each other. Then, they include an exercise where parents, families and caregivers can reflect on their own attitudes and values. I think this is a really important piece - a closer look at the personal values and the universal values.
The second dot point on this slide mentions a Policy Statement on Sexuality, that is shared with the parents and families. This Policy Statement is the one that comes from the Arc and the American Association on Intellectual and Developmental Disabilities from 2008.
The facilitators want parents, families, and caregivers to know that the curriculum, the Friendships and Dating curriculum, is based on these values and principles. If you haven't read this Position Statement on Sexuality from the Arc and AAIDD, I suggest you look it over. It's an excellent statement on the sexual rights of people with IDD and can provide a good place to share conversation about sexual rights and the importance of access to sex education. I want to read to you a portion of the intro section from that position statement.
"People with Intellectual and/or developmental disabilities like all people have inherent sexual rights. These rights and needs must be affirmed, defended, and respected. Every person has the right to exercise choices regarding sexual expression and social relationships. The presence of an intellectual or developmental disability, regardless of severity, does not in itself justify loss of rights related to sexuality."
Powerful words that need to be heard. I really appreciate how this curriculum includes a look at personal values and universal values in their orientation session.
Linda Sandman 50:29
As we pointed out, quite a few of the approved curricula have a method for including family and the support network as partners in the sex education program. Building in family and support network collaboration can be a great trauma-informed strategy. On this slide, I've included two more examples from the approved curricula.
In the FLASH, or Family Life and Sexual Health curriculum out of Washington state - that curriculum uses an introductory letter to families. The link to this letter is also on page two of the Planning Tool handout. The introductory letter explains that the curriculum will make use of optional family homework.
The purpose of these assignments is to encourage family communication about the topics in the sex education program. It's a chance to discuss your cultural or religious beliefs, and your personal feelings about sexual health issues. Surveys show that young people would like to talk more about these issues with a parent, or other trusted adult. And research shows that these conversations play a very important role in helping prevent pregnancy, STDs (sexually transmitted disease), and HIV. The Flash program includes family homework, to make these discussions easier and more frequent.
On the right-hand side of this slide, are - is information about how the WEAVE curriculum, another one of the approved curriculum, addresses parent and family engagement. For this curriculum there is a Facilitator's Guide, which describes how to use the WEAVE curriculum. And one of the features talked about is a Safe Person Workbook.
The Safe Person Workbook in this curriculum encourages participants to talk about healthy relationship topics with a safe and trusted person. This person may be a parent or guardian, a therapist, a Support Coordinator, a mentor, or a friend. Because safe people are so important, we suggest making a workbook for each group member's "safe person". The Safe Person Workbooks do not have to be as in-depth as the Participant Workbook. They can simply be the cover page and the homework page for each lesson. You can include any other handouts that you think might be important for the safe person to read. The goal of the Safe Person Workbook is that each group member and their safe person do the homework together. When the safe person has their own workbook, they can check in with the group member by using the homework pages and talking about what the content is and what's being learned.
I hope these examples give you some ideas about how you can engage parents, families, and guardians in the sex education plan. They can be helpful allies and evidence shows it can also improve communication between the individual with disabilities and their family members or guardian.
54:05
Now we're going to take some time to watch a video. This video is called "Education on Appropriate Touch" and it is made by the Advocate Adult Down Syndrome Clinic. You can find this video listed on the Resource List on the Sex Education Curriculum webpage from the Department of Human Services. I love that this video is made by a self-advocate with the help of her family, her boyfriend and good friend. It's so exciting to see this level of engagement and support from the family members. Let's watch!
VIDEO: Education on Appropriate Touch 54:48 - 1:01:03 Inserted Video is captioned
Linda Sandman 1:01:04
Wasn't that a great video? Think about how you might use a video like this to show parents how they can play a key role in supporting sex education.
So, in addition to the video from the Advocate Adult Down Syndrome Clinic, there are a number of other resources for parents and families included on the Resource List that's on the Department of Human Services Sex Education Curriculum webpage. It's important to note that including information to support the parent and family involvement in sex education is one of the ways the Sex Education Implementation Workgroup has shown that partnering with parents, families and guardians really matters.
On this slide are two resources that focus on parents and families. The first one, the first dot point, the Center for Parent Information and Resources is a website. And it's full of information gathered from Parent Centers that serve families of people with disabilities. They've dedicated a whole page on their website with information about sexuality education for people with disabilities. Topics include: the Basics of Human Sexuality; Sexuality and Disability; and The Special Role of Parent - of Parents. They also talk about Content to be Taught, and the Materials on Specific Disabilities. Lots of great information on that website.
Skillflix, the second dot point here, is a website where you can sign up for a subscription and access a wide range of videos for parents on how to improve their skills talking about sexuality. There are over 80 short videos searchable by topic, skill, or key word. The target audience is parents of youth 12 to 18 years old, with a mild or moderate intellectual disability. But the videos can still be a great resource for parents of adults with disabilities.
1:03:24
The Healthy Bodies Toolkit, and Puberty, Sex and Sexuality booklet, were developed by the Vanderbilt Kennedy Center. These are a fantastic resource for parents, families, and guardians. And they continue to keep updating their site, so it's worth going back and checking it out. The Healthy Body Toolkit comes in a version for Boys with Disabilities and Girls with Disabilities. Again, although these are targeted for younger people with disabilities, they still have some good information - information about the difference between public and private behavior, and about types of relationships, and about touch that could be helpful and could be used, especially the Appendix section. All of this can be downloaded for free from the website.
And I just found out that they've updated this in more languages. So, when I first, they first had developed it, they had it in English and Spanish; but they've now added a version in Turkish, and also a version in Thai, which I think is very interesting. So, it's worth checking out and keeping up to date because they may be even adding more languages.
Linda Sandman 1:04:40
The Appendix has picture stories and activities that can be very helpful in the sex education process.
Plus, I just discovered that they have added an additional guide for autistic teens and adults. So, on the slide here you see their initial Guide and Introduction for Autistic Teens and Adults. They have now a second guide that's called Navigating Puberty, Sex and Sexuality. So, the Vanderbilt Kennedy website with the Healthy Bodies Toolkit is a great resource because they have a number of guides there and they seem to keep adding them.
1:05:23
This is another guide for parents and caregivers. It was published by the Florida Council on Developmental Disabilities, and it is available in English and Spanish. The Department of Human Services Resource List has links to both versions. This manual is bigger than the ones from the Healthy Bodies Toolkit. In fact, it has over 100 pages. And it covers from young children through young adults, it does say Sexuality across the Lifespan. There are activities, diagrams and suggestions for teaching included, along with more resources. It's pretty comprehensive and packed with information. And it's also free to download from the website.
1:06:15
So - now that you have learned how a number of the approved curricula and resources encourage collaboration with parents and families, please take out the handout: Module eight Planning Tool. This is formatted as a checklist so you can think through various options to reach out to families and engage them in the sex education process. Please pause the recording and take some time to look over this planning tool. You may want to indicate your initial thoughts about what your preferred approach will be.
(PAUSE RECORDING FOR ACTIVITY)
Linda Sandman 1:07:04
Okay, now that you've had a chance to kind of look over the handout, you can see that this Planning Tool is something you will probably want to revisit once you have taken some time to look over the various resources that we have mentioned in this presentation, and that are listed on the second page of the Planning Tool handout. As you plan and implement the sex education program at your organization, don't forget parents and families. They can be great partners and allies in supporting sex education.
Linda Sandman 1:07:43
So, I want to thank you for joining us for Module eight. Please be sure to check out all eight Train-the-Trainer modules in the "What's Right about Sex Education" series. Look for the link titled Train-the-Trainer: What's Right about Sex Education, and you will be directed to the page where all the modules are posted, along with activities, handouts, and resources. As a reminder, it is not necessary to watch these modules in order and you may watch a module as many times as you like.
1:08:22
As we close out today, you can see my contact information is listed here, as well as the contact information for Cynthia SchierlSpreen from the Bureau of Quality Management listed on this slide. I want to give special thanks to Curtis Harris, Teresa Parks and Rocio Perez for their contributions to this presentation. We have so much to learn from them.
Thank you everyone and have a great day.
