Transcript – Module 1

Linda Sandman - 0:05

Good morning. My name is Linda Sandman and we would like to welcome you to the first module in the training series. What's Right about Sex Ed, designed to help you in your work to provide sexuality education to individuals with intellectual and developmental disabilities. The title of this first module is Sex Education for Persons with Intellectual and Developmental Disabilities, Public Act 101-0506. There's a picture on this slide of a red heart and inside the heart are two figures, one is standing and one is seated in a wheelchair. They're holding hands, and each figure has their heart outlined.


This training and other modules in the series are being brought to you by Blue Tower Solutions, Incorporated and the Illinois Council on Developmental Disabilities. You can see the logo of Blue Tower Solutions, which looks like a tower, lighthouse tower, with a light shining and clouds here on the screen. And we are 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, which you can see their logo here on the screen, it looks like an outline of the state of Illinois, and it has the initials C for council D for developmental and D for disabilities inside the outline of the state. Their mission is to help lead change in Illinois, so all people with developmental disabilities exercise their right to equal opportunity, and freedom. Today's speakers are Diana Braun, Teresa Parks and myself, Linda Sandman. We have included our BIOS as a handout for this training module. But in the meantime, we'd like to introduce ourselves. Diana, would you like to go first?

Diana Braun - 2:33

Yeah, I'm Diana Braun and I am a member of the Illinois Planning Council, here in Springfield. And so then I'm going to be talking about my presentation in a few minutes.

Linda Sandman - 2:52

Thank you, Diana. And Teresa -

Teresa Parks - 2:55

Hello, my name is Teresa Parks. I work for the Illinois Guardianship and Advocacy Commission where I've been for a little over 30 years. I'm also a National Certified Guardian through the Center for Guardianship Certification. I'm a member a board member for the Illinois Guardianship Association as well as a member of the Illinois Council on Developmental Disabilities. And last but not least, and probably most importantly, I am the personal guardian for my adult son with disabilities.

Linda Sandman - 3:29

Thank you, Teresa. And as for myself, Linda Sandman, I am a licensed clinical social worker in Illinois, and Co-Director with Blue Tower Solutions. I have over 35 years' experience working with people with disabilities, including mental health, intellectual and developmental disabilities in clinical roles, as well as a researcher and faculty member at the University of Illinois at Chicago. I have been part of statewide anti-violence projects and I have worked as a consultant and trainer. Today's presenters are all members of the Sex Education Implementation Oversight Committee that is working to help develop materials and resources to comply with Public Act 101-0506. We are delighted to have this opportunity to talk about this important piece of legislation.


Today's training will provide a brief overview of the training series and will give you background information about the sex education legislation. We will share important information gathered from self-advocates. We will take a closer look at key components and definitions from the legislation and point you toward resources available through the Illinois Department of Human Services web page on the sex education curriculum. The training series on sex education will help providers and it contains eight modules. These modules will cover information about the law - that's this module; and about sexual rights of people with intellectual and developmental disabilities. There will be information on what are the approved curriculum and resources and how you can locate them. There will be guidance on how to design a sexuality education program at your organization, and how to partner with parents and guardians. Expert speakers from around the state and country including self-advocates will be involved in presenting the information during this training series. All trainings will be posted to the Bureau of Quality Management training platform, so they can be viewed as often as needed. If you have any questions about this training series, my contact information will be posted at the end of each training module. Please feel free to reach out to me.

Teresa Parks - 6:25

Thank you, Linda. My name is Teresa Parks and I, as I stated previously, I work for the Illinois Guardianship and Advocacy Commission. And it was our agency that initiated the sex education legislation. So I wanted to share a little bit of background about our agency and about the origins of the legislation. The Illinois Guardianship and Advocacy Commission is a state agency. We're a little bit different than other state agencies in that we have a Board of Commissioners at the top of the agency who are appointed by the Governor. Commissioners come to us with backgrounds in human services, disability services, we have commissioners who have legal backgrounds. We also have commissioners who are legislators, legislators from both sides of the aisle who are appointed by the governor to serve on the Commission. Our overarching mission is to safeguard the rights of people with disabilities. And we do this through our programs and initiatives. And I want to take a few minutes to tell you about those programs and initiatives. First of all, our most widely known program is the Office of State Guardian. We are guardian of last resort for adults with disabilities. That means we don't get appointed by the courts unless there is no one else available, able or appropriate to serve as an individual's guardian. We are guardian for more than 5000 individuals across the state of Illinois. We also have a program called the Legal Advocacy Service. And in this program, we have attorneys who provide legal advice and representation for both children and adults with disabilities. Most often our attorneys are representing individuals who are facing involuntary mental health proceedings, including involuntary commitment to a mental health facility, as well as court order treatment. Usually that treatment is psychotropic medication treatment. Our attorneys represent the individuals to ensure their due process protections during those proceedings. We have a program called the Human Rights Authority, which I'm going to go over in just a little bit. And then recently, we started a Special Education Advocacy initiative to provide families here in Illinois with a resource for special education questions and issues.

Under our enabling legislation, the Guardianship and Advocacy Act, we have the ability to recommend legislation. This happens most often when an issue arises from one of our programs or initiatives that points to some type of macro systemic gap, a gap in services, a gap in rights protections or maybe a reoccurring rights issue that never seems to get resolved. And sometimes we feel the need to address this through some type of public policy change. And that usually means legislation. And that's exactly what happened with the sex education legislation. Next slide.

Linda - 9:35

I am going to jump in and add that what you see here on this slide is the logo for the Illinois Guardianship and Advocacy Commission. And it's a logo you should learn to recognize because as you've just heard, they provide so many important services.

Teresa - 9:52

Thank you, Linda. The Human Rights Authority was really where this legislative proposal arose from. And our mission in this particular program is to investigate disability rights violations that are committed against persons with disabilities, by disability service providers. And we have a unique makeup. We have nine regional panels of appointed human rights authority members who operate like boards. And they review complaints. They determine whether or not to pursue an investigation, they conduct the investigation. And then they issue findings. And they have access to a regional staff person who coordinates their activities, provides technical assistance, and that person is called a disability rights manager. Each panel is comprised of nine members. The members include self-advocates, family members and guardians of persons with disabilities as well as disability service providers. And I'm proud to say that Diana Braun actually serves as one of our human rights authority members on our Springfield regional panel. Ultimately, what we hope to do through the authorities work is to work with providers, negotiate with them to make systemic, policy, procedural and practice changes that will better protect the rights of people with disabilities when we do find violations. And I always have to put in a commercial plug, because periodically, we have vacancies on our regional panels. And we'd love to hear from anyone out there who might be interested in serving as a regional human rights authority member, you can apply online through our agency website

Next slide.


So within our Human Rights Authority, we started seeing a pattern of cases that involve sexual expression rights, as well as access to or lack of access to sex education. For example, we had cases where group homes have policies that literally forbid any kind of intimate behavior exchanges between residents. No hugging, no holding hands, no kissing, and certainly no, no sexual intercourse. And in one policy, in one case that we had the group home had a policy that stated that if residents wanted to engage in any of those types of behaviors, they would have to get married. And if they got married, they would have to move because the group home could not accommodate a married couple. In another set of cases, we had group homes that were restricting residents' rights, if they engage in any type of intimate behavior. They might be reprimanded in front of their peers or sent to their room, or maybe denied a favorite activity or even a community outing. We had a case involving a client who lived in the community who was actually facing criminal charges, because it was thought that his partner did not have the capacity, the consent capacity to enter into that relationship. And finally, we had a case involving a student receiving special education services. And he was facing discipline for inappropriately touching a female peer. Yet, he'd never had access to sex education in either the general curriculum or through the special education program.


So this next slide, you will see a scroll being opened by a pair of hands, and it says the word law on the scroll. So with each of these cases I just described, they remained unresolved, we've faced pushback from service providers who were concerned about crossing that line into sexual expression rights or, or providing sex education. Some of them expressed concern about pushback they would receive from families and Guardians so we went to the Department of Human Services and shared our concerns in these unresolved cases. And they conveyed that they too had attempted to pursue sex education, and met similar pushback. So at that point, we felt that our only remedy, our only recourse was to pursue public policy changes, and that would be in the form of legislation. So we drafted some legislation that would provide for sex education for adults with intellectual and developmental disabilities. And we presented it to one of our commissioners, Representative Will Davis from Homewood. And he agreed to be the primary sponsor of the legislation in the House. And then on the Senate side, one of our former commissioners, Senator Don Harmon agreed to sponsor the legislation in the Senate. Representative Davis initially presented this legislation in a subcommittee of the House and he experienced immediate pushback from a legislator there, and he was directed by the chair of that subcommittee to pursue some engagement, some feedback from stakeholders. So we did that. We set up stakeholder meetings across the state, one in Chicago, one in Springfield, and one in downstate Marion. And those meetings were heavily attended by self-advocates, by parents and guardians of persons with disabilities, by service providers and service provider organizations and by advocacy organizations. And they gave us a lot of great feedback that led to some revised language in that legislative proposal. Representative Will Davis then reintroduced the legislation with the revisions in the next session. The legislation passed and was signed into law by Governor Pritzker in August of 2019, with an implementation date of January 1, 2020.


On this slide, you see an individual standing at a podium speaking. Key to the legislation moving forward was testimony, testimony by self-advocates at stakeholder meetings, as well as at a hearing, a House subcommittee hearing. It is my honor to introduce now Diana Braun, who testified before a House subcommittee. She is going to share the actual testimony she shared during that hearing. Diana, and you'll need to unmute yourself Diana.

Linda - 16:32

Oops, we can't hear you yet Diana. There you go.

Diana - 16:47

I'm Diana. I'm going to introduce myself and then I'm going to go into my presentation. Hello, my name is Diane Braun and I am a member of the Illinois Council on Development Disabilities. On Wednesday, December the 12th, 2018. I went to Marion, Illinois to provide education and advocacy, about the importance of sex education, in response to the House Bill 3299. There were a lot of people there who were not too happy. They did not like to hear that their son and daughter could be exposed to sex education. We were trying to help people understand that all people are able to learn even that yes or no or what to do in a bad situation. Then it is really a point for everyone.

I later spoke at the hearing on the bill. Here is the statement I may at the hearing. I live on my own in Springfield, Illinois. Before that I have lived with two different foster families. Before that - integrated care facility. Before that, a nursing home - and before that a state institution. I used to live in Dixon State School, in Dixon, Illinois before it was closed down.

That is why I am here today. I did not get sex education in school. I did not get any sex education from the staff at any of the places where I have lived in. I do not recall anyone I lived with ever get any sex education either. And I have lived with hundreds of other people during that time. I fully support education for all people with disability that focus on safety because when I lived in an institution, it was not safe. This included safety about sex. I want people to know how to show others when it is okay and when it is not okay to be touched.

When I was 12 years old, while living in Dixon State School, a fellow resident, who was much older than me, at that time, pulled me into the broom closet and tried to rape me. I knew what he was doing was wrong. I managed to escape. Not everyone is as lucky as me.

When I learned that there was an effort to provide sex education, to people living in the institution, I knew I wanted to provide my support. I think it's very important for people like me, who are victims, so they know what to do. I also think that it is very important for people like the guy who attacked me to know what is right and wrong. The guy who attacked me had severe disability. I wonder if he had had someone to tell him what is right and wrong about sex, if he would have attacked me. I wonder if his parents or guardians thought that type of education was important. I wonder if the staff that helped him wanted to teach him, but they did not know how. I would never know.


But maybe the world can learn from my experience. And together, we can keep things like this from happening to other people.

That was my statement at the hearing. I decided to share my story because people don't know what happens to people with disability. People need to hear what has happened to me. And what happened to others. After I told my story, I was told "Great job!" and "Thumbs up!" Some people told me that they knew where I was coming from. I knew people in the room and that helped. I was not afraid to speak or share my story. If I were asked to testify to the legislature again, I would do it. I think people with disabilities need to share their story. Teacher, legislator, places that work with people with disability all need to hear where we are coming from. Thank you.

Linda - 23:19

Thank you, Diana, for your powerful testimony. You're right, a lot of us need to do more listening. Absolutely I do. So, as you can tell, we have been trying to follow the lead of what self-advocates have been telling us about the importance of this issue. And as part of our Sex Ed Group Oversight Implementation Committee, the Illinois Self Advocacy Alliance was asked to hold a series of focus groups with self-advocates around the state. And from those conversations, several important statements were made. Those statements have been put together into a document titled "What Self Advocates Want You to Know". And we really recommend that you read this statement. It is posted on the Illinois Self Advocacy Alliance website. And there's a link to it from the Department of Human Services web page on sex education. You can see here a quote on this slide. "I want to know more so I can decide what is right for me, my body, my choice." And that's a really, really important statement. Some of the principal or most important findings from those focus group meetings were three things: 1) Self-advocates want to learn about healthy relationships, and sexuality. Diana talked about that, right? People need access to the information. 2) Self-advocates stated that many never received sex education. They want the sex education to be accessible to them. And that's a really important point - that the materials need to be adapted into a way that people can really use them and learn from them. And Diana talked about that as well, right? That she didn't have access, and that all the people that she knew, in the facilities where she lived, did not have access to sex education. And the 3) [third] important point made by self-advocates was they said "Ask us; consult with us on how the classes take place; involve us." And I can tell you that in the work of the Oversight Implementation Committee, and all of its subcommittees, self-advocates have played a key role. And in this training series, the plan is to have self-advocates participate in all the modules. And Diana, I think that your voice and what you have added from your testimony, and from your participation is where we need to be listening, like we said. I don't know if you have any other words about, kind of what this information is, that self-advocates gathered . . .

Diana - 26:41

You know, if they want to learn it from their own selves, they need to listen to this presentation. Because it will help them, if they don't want their body to be touched, if they don't have to do it. But if their - they have to listen to their own body, and they have to learn how to say no to the other person. If you want to try it, you have to learn to say no. But if he doesn't, they have to learn how to get something to protect themselves or push him off of them. That's the way you have to do it.

Linda - 27:25

Yeah, absolutely. I think you're so right that self-advocates need to be able to find their own voice to express what they want. Whether that's that they want to be in a relationship, whether that's they don't want to be in a relationship; how they want to be touched, how it - because it is their body. And I think you're absolutely right about that. Thank you so much. All right, we're gonna move on to the next slide.

Teresa - 27:54

I will share some key points of the legislation. But first, I just want to thank Diana, the self-advocates across state and the Self Advocacy Alliance for their role. The key points of the legislation. First of all, it adds a section to the Mental Health and Developmental Disabilities code. This is the basic law in Illinois that protects the rights of people with disabilities. In fact, when a service provider provides a statement of rights, those rights come from this legislation. So this new legislation, the sex education legislation has been incorporated into this basic rights law here in Illinois. And it applies to certain types of facilities. And I'm going to go over the definition in just a little bit more detail in just a moment. But basically, the law requires that individuals with adults with intellectual and developmental disabilities have access to sex education, to resources and to treatment planning that supports their right to sexual health and healthy sexual practices, while also supporting their right to be free from exploitation and abuse. The law also requires that each individual be assessed in two areas. First of all, whether or not the person has the decision making capacity to consent to sexual activity. And secondly, for the most developmentally appropriate sex education, materials and resources that will meet that visual needs. And then it's the second component that is the basis of this entire consideration be given to any existing medical, psychological and psychosocial evaluations that will point to a person's Decision Making capacity as well as developmentally appropriate sex education. The law also says that the final determination of consent capacity as well as developmentally appropriate sex education is to be done by a treatment team. And that treatment team must include the individual professionals who know the individual. And if the individual has a guardian, The Guardian must be included. So on this slide, I will say that there's a picture of a face kind of questioning with a questioning look, expression on the face. And throughout this webinars, we are going to offer up some points to ponder, something for you to think about. We'll give you a few minutes to think about it and then we'll we will discuss an answer. But in this first point to ponder it asks, Can the Guardian block an individual's participation in sex education, if the individual wants to participate? So think about that. And if we look at the next slide, we will discuss an answer. So the legislation actually covers a section or it has a statement regarding the Guardian role, it says the Guardian decision making is to conform to the standards of decision making under the law. And the basic law in Illinois that covers Guardian requirements is called the Illinois probate act. And in this act, it says the guardians are to make decisions based on substituted judgment first, and what that means it implies that a guardian, consider the wishes the preferences of the individual or previously stated preferences, or what the individual would have preferred if they had capacity.


And if a guardian cannot ascertain an individual's preferences, then they can make decisions based on best interest standards. And that would be what is in the best interest of the individual taking into account certain things such as what would maximize that individual's independence and self-reliance, and what would meet that individual's needs, or what is the least restrictive approach in serving this individual. Ultimately, the law says that the decision about sex education is to be made by the treatment team that includes the Guardian, the individual, and professionals. When there are conflicts between a guardian and an individual, then it's incumbent upon the treatment team to consider some kind of resolution, hopefully through the treatment planning process. But if that doesn't work, maybe involving the independent service coordination agency that serves the individual, it may mean involving an advocacy organization. And finally, if the conflict continues, and there doesn't seem to be adequate resolution, the matter can be taken back to the court where the guardianship was established, and have the court review the need for sex education. All of this information about recourse over conflicts with Guardian is addressed in a Guardian Factsheet that our agency developed. And it's posted on our agency website


So I am going to take a few minutes now and tell you a little bit more about what we've been doing since the law passed in terms of implementation. We first of all started out with sending surveys to all the stakeholders who were involved in the stakeholder meetings, getting their feedback on implementation approaches. We got a lot of good feedback, we took it to the Department of Human Services, and we agreed to collaborate with the Department in working on the implementation of the law. And we started out by developing an Oversight Workgroup that Linda's mentioned, and Diana was a part of that as well as Linda, and then from that we developed some subcommittees including a Curriculum Committee, a Process Committee and then a Train the Trainer Committee, and I'm proud to say that all of those committees included self-advocates, service providers, family members, advocacy organizations, and of course, representatives from the Department of Human Services. Next slide.

Linda - 34:53

So thank you, Teresa. As you can see, there's been a lot of effort and a lot work by many people in trying to help and support providers in the implementation of this law. So in the law, there is specific language about nine components that need to be included in the sexuality education instruction. So let's take a minute or two and go over these more closely. You can see it's a lot of content here on the slide. But you will have time to go back from the Department of Human Services webpage and look at these more closely. The first three components, the first three dot points on this slide, have to do with the approach that is used in presenting the sex education materials, the information needs to be appropriate to the developmental disability. Sorry, just a second, the information needs to be appropriate to the developmental disability of the recipient and present identity as part of mature adulthood. These two points are important because too often, sex education is provided in ways that are not accessible to an individual with intellectual and developmental disabilities. The law ensures that the sex education materials taught will take into consideration the learning style and comprehension of the person receiving the information. It also ensures that providers recognize they are providing information to adults. Therefore, the content should include information consistent with the chronological age of adulthood, and how adults may identify as sexual beings. Evidence based program reflects that the materials are based in current standards of sex education, knowledge and practice, rather than an individual's personal experience and preferences. The remaining six components that you see here on the slide have to do with specific content to be included in the sex education materials, you can see that these reference pretty common elements of sexual health education, such as information about sexually transmitted disease, prevention of pregnancy, including the use of condoms, there are components that address safety and recognizing unwanted and dangerous sexual behaviors, including from potential predators. And finally, the components recognize and address more than behavior. They state that the education materials and instruction shall include a discussion of the emotional and psychological consequences of sexual intercourse and pregnancy. There's a recognition that sexual and romantic involvement involves more than just what, how you physically are acting, but it can really represent your mental and emotional health as well.


So the legislation charges the Department of Human Services with approving course materials and sex education, and states that they the department cannot withhold approval of materials that otherwise meet the criteria on the basis that they include or refer to a religious or faith based perspective. In order to support providers and their efforts to comply with the law. The sex education implementation oversight committee created a subcommittee the Curriculum Committee that Teresa referenced to review this curriculum, the various curriculum, so the Curriculum Committee met regularly over a period of about seven months to review materials. Ultimately, seven sex education curricula and an extensive resource list were recommended by the committee and approved by the Department of Human Services. All of the sex education curricula were developed specifically to be used with individuals with disabilities. You can refer to the curriculum committee summary that is listed on the Illinois Department of Human Services webpage on sex education. The address for that is listed here on this slide, but we'll also be providing you with a resource handout to accompany this training and that website is listed on that resource handout. In addition to the seven curriculum, the committee reviewed additional resources, like websites, books and articles, videos and podcasts, This is to comply with the statement in the law that says, a person admitted to a developmental disability facility and receiving habilitation shall have access to sex education related resources and treatment planning that supports his or her right to sexual health and healthy sexual practices, and to be free from sexual exploitation and abuse. We have here on this slide a green circle with a thumbs up on it, the Curriculum Committee decided to put a green thumbs up symbol next to any resource on the resource list. That means that the resource is accessible and user friendly and contains plain language. This is to help make sure that the materials here are really accessible and useful for self-advocates. On this slide here, there is a large picture. That is an example of the curriculum review tool that was designed by the Curriculum Committee. It's an example of the format that was used. And there's one of these curriculum review tools for each of the seven curricula that were approved by the Department of Human Services. On this graphic, you will find information that includes the cost of the curriculum, how to locate the curriculum, like who marketed or publishes it, and who to contact for more information. Below that information and the title of the curriculum, of course, below that information, there are five categories kind of in a table format. And those five categories are universal design and accessibility. And then there are comments listed about underneath that category describing the how the curriculum ranks in terms of its universal design, and accessibility. If the material is adaptable is the next column, material adaptable. And here we were looking at: is the material adaptable for different ages for different genders, cultures and religion?

There's also a column for the sexual rights component; how do each of the curricula address the topic of sexual rights? And the next column is trainer resources - here we were looking at does the curriculum provide guidance for the trainer or educator in using the material? And finally the last column is looking at does this curriculum meet the Illinois legislative requirements? That references back to those 9 components that I talked about in the previous slide. And so, each curriculum is described in terms of how well it does in meeting those requirements.


Then, below that there is a section for a general overview and guidance on the curriculum that talks about the strengths and other features of the curriculum, as well as how well does the curriculum do in meeting the definitions of developmentally appropriate and evidence-based, that are stated in the legislation.


So, here we have another point to ponder - and these points to ponder are really, an effort to kind of anticipate some of the questions that you may be having and, if you are attending this training as a group from your organization, you can pause this recording, and have time to discuss this among yourselves. And then, hit play again and continue with the training. So this question, again with that emoji of a face kind of looking a little puzzled, or thoughtful, we have the question: "If an agency wants to use materials that are not on the approved list, are there any options to request approval for these materials?" So this is where you can then hit "Pause" and have your conversation, or if you wanted, if you are taking this on your own, you could just pause and have a minute on your own to write down your thoughts about that.


All right, continuing on, the Curriculum Committee, and the Sex Ed Implementation Oversight workgroup has established a process to review materials. We recognize that agencies may find materials that are not currently on the resource list or one of the 7 approved curricula, or that new materials are continuously being developed, and so there may be some that have not been looked at yet by the Curriculum Committee. So agencies can request a review of these materials that are not currently on the approved list by making that request to the Department of Human Services DD Division. Then, a copy of these materials would be needed to be provided to the Curriculum Committee, so that we have the means to review them and see how they fit with the components required in the law. And then, the Curriculum Committee will meet to conduct the review of any submitted materials. And those reviews will be conducted quarterly, if needed. And once the review is received, then a response will be made once, if we're on that quarterly system, a response will be made to the requesting agency in 60 days. So we do try for a timely turn-around on that.


The Sex Education Implementation Oversight Committee has provided for definitions of several key terms that are included in the legislation. We have already been kind of talking about these, but we really do want to take some time to look at them a little more closely and just make sure that there is a common understanding.

The terms listed here and their definitions can all be found on that webpage, Sex Education Curriculum from the Department of Human Services. So, these next slides we will review each of the definitions.

Teresa - 46:40

I'm going to start out with the first definition, which is the definition for a developmental disability facility, and it really means a facility that provides habilitation to a person with intellectual and developmental disabilities. This would include facilities that are licensed, certified or operated as State Operated Developmental Centers, Community Integrated Living Arrangements, or CILAs, this is the most common type of group home in Illinois, Intermediate Care Facilities for persons with developmental disabilities, that would be IFC-DDs, and that would include the 16 bed group homes, and day programs. And this matters because anyone who receives services from any of these entities are entitled to receive sex education.

So here is another point to ponder if you want to stop and consider this point. And you'll see again, an emoji of a face with a questioning expression. And this question asks "If an individual lives at home with family, but attends a day program at an agency, can this individual receive sex education under the guidelines of the law?" So I'll take a moment here and pause. The answer to this question is "Yes" because day program is included in the definition of facility, it applies to, um, that individual can receive sex education through the day program. If an individual lives at home and doesn't participate in a day program or any services, it would really be up to that individual or family to arrange for any kind of needed sex education. Certainly they can use the resources available through the Department's website or any other community provider that provides sex education. If an individual lives in a CILA and also goes to a day program, they can choose where they want to receive the sex education, either at the day program or at the CILA. So, I'll turn it over to Linda next.

Linda - 49:01

Thanks, Teresa. So what you see here on the slide is the next definition, Developmentally Appropriate. The definition of developmentally appropriate ensures that the sex education is tailored to how the individual learns best.

Historically, sex education, if provided at all, like Diana referenced, is taught in ways that individuals with IDD do not understand. So, this definition takes into account not just what an individual's IQ score may be, but other elements as well.

For example, a person who uses a wheelchair may need information that has been adapted for their physical presentation, and not just their cognitive learning style.

It's also important to remember that this legislation addresses sex education for adults, not minors. The chronological age of the individual can help guide the content that might be appropriate. For example, an individual with an intellectual disability may have questions about marriage. If the provider has an over-reliance on age- equivalencies in IQ testing, they may think that this adult is "like a child" and content about marriage is "not appropriate". That would be a mistake.

The definition of "developmentally appropriate" emphasizes keeping the content accessible and respecting the needs of the individual. The goal is for individuals to understand how the content applies to their lives. Providers need to take the time to answer any questions that individuals may have. Doing this will help make sure that the sex education is developmentally appropriate.


The next definition is Evidence-based. The law states: Sex education materials shall "replicate evidence- based programs or substantially incorporate elements of evidence-based programs".

So, the definition on this slide helps give some context to this requirement. Evidence- based programs will integrate the best research practice, professional experience and ethics and the individual's own culture, values and preferences. For each curriculum review posted on the state website, there is a statement about how the curricula meets the definitions of developmentally appropriate and evidence-based.

Honestly, in today's world, there is relatively little rigorous research, evaluation research on sex education curricula designed specifically for individuals with intellectual and developmental disabilities. This is an area where much work is still needed. If such research exists, it is noted on that specific curricula review. However, it is noted that the curricula are evidence-informed and incorporate elements of evidence-based programs, therefore in compliance with the law. The approved curricula are based on solid educational principles, years of professional experience and they take into account the needs, values and preferences of individuals with intellectual and developmental disabilities. So, this analysis follows the 3 components of the definition, as listed here, and that is what we used to evaluate the sex education curricula.


Here's another point to ponder. Again, with that little emoji, questioning, a lot of thinking going on, (laughter). Here's the question: An individual doesn't want anything to do with romance and dating, however, the staff has noticed that this person has difficulty respecting other people's personal boundaries. Does this individual need to be assessed for sex education?

We'll give you a minute to think about it. Again, this is a time when you may want to pause the recording.

Okay, so, um, the Sex Education Implementation Oversight Committee recognizes that there may be situations where a person may not be directly expressing interest, but there is still some need and concern on the behalf of those who know the individual well.

So this slide gives you some idea of some of the pathways to assess for participation in sex education. There may be situations where an individual makes a request to receive sex education. So that could be one pathway, the individual expresses the interest, or their behavior expresses the interest and so it's apparent. There are other times when the professional who knows the individual well may recommend sex education. There may be a particular kind of issue, such as in the example previous about touching behavior. This uh, the professionals who know the individual could include the Independent Service Coordination Agency worker or the Department of Rehab Services worker. Anyone who really does know this individual. For example, the individual could have problems with touching others inappropriately at work and a request has been made for more education to help the individual better understand consent and personal boundaries.

There also could be situations where the family and the guardian may also request sex education for the individual - maybe this is because they have concerns about a person in the community who may be taking advantage of the individual. All of these reasons are good reasons for the treatment team to consider the request for sex education.

The sex education may be related to some specific content or it may be inclusive of multiple topic areas. The treatment team who considers the request is made up of more than agency staff. According to the law, "the treatment team includes the individual, professionals who have knowledge of the individual, and the individual's guardian, if appointed."

The graphic on this slide shows you these different pathways. So, there is a box with the words "individual with IDD" in it, there's a box for "professionals who know the individual" and there's a box for the "Family/Guardian". And then there are arrows pointing to the "Request for Sex Education", indicating that there are these different pathways. And then below that, it's the "Treatment Team" that makes the decision, and that the Treatment Team shall include the individual with intellectual and developmental disabilities.


So here is a lot of text on the slide. (laughter) And um, this is because we're making the effort to define for you what is meant by the term Sexual Activity. So the law uses the term Sexual Activity both in terms of consent capacity, as well as regarding the access to sex education. So here's the definition: Sexual Activity is an expansive term inclusive of a range of relationships, actions, and topics. Many times when people think of sexual activity, they immediately think of sexual intercourse. But sexual activity can really encompass so much more. As you can see from the 9 components covered in the law, which we talked about previously, it is the intention to define sexual activity more broadly, an expansive term.

Sexual activity includes sexual health; it includes sexual rights, like privacy and to be free from abuse. It includes activities one might engage in on their own, like masturbation. It also includes the emotional and psychological consequences of relationships and intimacy.

The assessment process should not focus narrowly on whether a person has an interest or capacity to consent to sexual intercourse with a partner. It can certainly include individuals with that interest or behavior, but it shouldn't just be limited to those individuals.


Here's the rest of that definition, as I told you it's a lengthy definition because we are taking a very expansive look at this term. "A person who may not fully understand the act of sexual intercourse and/or may not be found competent to consent to that activity may still have interest in exploring and/or engaging in a variety of activities or topics." And so those are listed here on this slide, both activities and topics. The intention here is to hope that we can find a better fit for how the sex education can match up with the interests and activities of individuals.

For example, someone may only be interested in dating, but not interested in physical intimacy, like kissing and sexual intercourse. This person could benefit from receiving sex education about dating relationships and consent and boundaries. Another person, like the example on the previous slide, could benefit from more knowledge and understanding about boundaries and touch. Another person may talk too explicitly about sexual topics and could use more education and support around communication and boundaries. While another may have difficulty setting limits with peers who flirt and provoke, and make the person feel uncomfortable. And so they may need some support around setting limits and how to use their voice to speak up for themselves.


And yes, there's a sexual activity page three. (laughter) So here, these examples all give an idea of the types of situations that can present an opportunity to provide sex education. The assessment that the person lacks the capacity to consent to sexual intercourse should not limit their access to receive support in other areas of education. Why does this matter? Because recognizing that the term "sexual activity" covers an expansive range of behaviors and topics helps ensure access to sex education for individuals with intellectual and developmental disabilities.

Teresa - 1:00:29

So I'm going to take the next point to ponder, again with that questioning, pondering emoji face at the top of the screen there. And this point asks: "What if professionals who know the individual with intellectual and developmental disabilities recommend sex education, but the individual refuses? Can they still receive the recommended sex education?" So, the answer to this is that certainly individuals have the right to choose. They also have the right to refuse. But if the professional is making a recommendation for sex education, it's really incumbent upon the professionals to explain to the individual why they believe that sex education is warranted. They may also explore with the individual why they are refusing. Maybe it's the way in which the sex education is being provided. Maybe it's the subject matter or topic area. Maybe they would be willing to at least receive education in a certain area, such as self-protection.

However, I believe that this issue should be re-approached on an annual basis with the individual, and more often if an issue arises.


So the next slide, we are going to go over what resources are available on the Department of Human Services' website, so you know where to find some of this information. First of all, as Linda previously mentioned, the approved definitions can be found on the Department's website, as well as all of the pre-approved curricula, the seven curricula. The resource list can also be found on the Department's website. The Department, the Department of Human Services' website also includes a link, a link to the Sexual Rights Statement which is found on the Guardianship and Advocacy Commission website, which is You can go to it directly, to our website or you can click on the link on the Department's website. And I'm pleased to announce that the Self Advocacy Alliance also developed a version of the Sexual Rights Statement for self-advocates and that can be found on our website, a link on the Department's website, or directly on the Self Advocacy Alliance website. The same with the Guardian Fact Sheet - there's a link on the Department's website to that Fact Sheet, or you can go directly to our agency website where it's actually posted. And again, thanks to the Self Advocacy Alliance for creating one for self-advocates. We also are, we have developed Frequently Asked Questions that are being posted on the Department's website. Again, a link to one for Guardians, an FAQ list for self-advocates, which will be on the, which is on the Self Advocacy Alliance website, and then a Frequently Asked Question sheet for service providers, I believe will be directly on the Department's website. Also, the Department will be posting a Consent Capacity Resource list. And this includes articles about consent capacity, as well as sample tools. And I would note that the Process Committee, one of the subcommittees of the Implementation Group created, also created a Consent Capacity tool, which will be posted on the Department's website. And also on the Department's website is a Summary of that Process Committee's work, including some suggested, not prescriptive, but suggested policy considerations for service providers and a suggested checklist for service providers.

Linda - 01:04:34

So, there is a Resource handout that accompanies this training and it will have links for the webpage that we have been referencing, as well as links to some of those specific documents. The easiest way for you to find information about the Department of Human Services' implementation of the Sex Education legislation is to visit the webpage. And the easiest way to find that webpage is to just plug in the search term "IDHS Sex Education" into your search bar. I have here a screen grab from Google, from the Google search bar and just put in "IDHS Sex Education" and that will land you on the page.


A more complicated way, if you're not comfortable with using the search bar to populate for your terms or perhaps you have some filters or something on your computer at work, is to go to the Department of Human Services webpage, generally speaking, the Provider section and the Division of Developmental Disabilities. And you'll see a page that looks something like this. On the screen I have a picture of that page, the Developmental Disabilities Provider Information page, which has four columns titled Communications, Resource Library, Billing and Processes and then, a column for Links. And there are two places on that page where you can find the Sex Education listed. One is under the Resource Library - and on this picture, I put a red circle where you would find it. And then also under the Links, so that's kind of a Quick Links section and it's down there at the bottom. Again, it has a red circle. And so you click on Sex Education Curriculum and you will go to the webpage.


So we are so glad that you joined us today for this training. Some of the final points we want to make - is that people with disabilities have historically lacked access to sex education and have been denied sexual expression rights. As Teresa explained at the beginning of this webinar, that was a huge part in motivating the initiative to get this law passed. Self-advocates made it clear that this issue is important to them, the legislature listened and this law was passed. So, it's an important piece of legislation. People with disabilities are at greater risk of being victims of sexual assault. They are placed at a tremendous disadvantage when they don't have access to sexuality education. It doesn't quite make sense when we know the level of risk that's involved, that we don't give people the opportunity to learn how to be safe and how to make good choices around sexual relationships. The law provides a vehicle for ensuring individualized assessments and access to developmentally appropriate sex education materials and resources - and that the way that that is implemented is determined by the treatment team.


On that handout, there will be links to the webpage on Sex Education, to the Guardianship and Advocacy Commission webpage, where the Guardian Fact Sheet and Sexual Rights are posted. There is a link to the actual law, so you can review it for yourself. And there is a link to the Illinois Self Advocacy Alliance, so you can learn more. If you don't have a self-advocacy group at your agency, you can learn about how to start a self-advocacy group.


That's the material that we have for you today on an introduction to the various components and definitions and guidelines from the law, and requirements from the law. We encourage you to come back for the next training module on Sexual Rights. It's not necessary that you watch these modules in order. You may watch a module based on what your particular need is, a pressing concern. But, right now, this will be our first module that will be posted. And I also encourage you that you can watch a module as many times as you want. So maybe you've watched this one individually and you decide that it would be good for your team to watch it together, you can do that. This is posted there and available to you for whatever your needs and the best, you know best, I guess, the way that your agency will want to train with this information.

On this slide, to keep the theme going for sexual rights is the same figure that was at the start of this presentation. A red heart, inside are two figures holding hands. One figure is standing, one figure is seated in a wheelchair and they both have their hearts outlined.


And the contact information, so I've listed myself and my email address as a contact for the content of this training series, "What's Right about Sex Ed". I've also listed the contact for Cynthia Schierl-Spreen, who is the Bureau Chief from the Bureau of Quality Management, under the Division of Developmental Disabilities. And from the Division's perspective, she is kind of overseeing the posting of these modules and can answer any questions that you may have regarding this training series. So we thank you for joining us and hope that you'll come back. Have a great day everyone.