Positive Approaches Journal, Volume 9, Issue 4

Positive Approaches Journal | 5

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Introduction

Human beings are reciprocal. We feed off of the relationships that we build with those around us. When an individual is unable to form healthy relationships or has achieved limited attachment to others, the needs the individual has can change, affecting every aspect of his or her life. In this issue of the Positive Approaches Journal, we bring you the importance of social connectedness and supporting people with disabilities in forming healthy and long-lasting relationships.

Most individuals are taught at a young age to greet those around them based on their relationship with others. They learn who they can interact with, how they can interact with them, and what situations they should work hard to avoid. For example, smiling at the person you pass on the street, not sharing personal information with people you do not know, and knowing it is okay to hug a grandmother whom you may not have seen in a few months. We are taught not to kiss our friends and the importance of proxemics (even if we are not taught that particular word for spatial awareness). By grade school, we acquire an understanding of private and public spaces, we have friends, and perhaps a romantic attachment to a peer. We get our hearts broken and we grieve losses but lean on those around us to get through heartache and loneliness. We share happiness with others who are closest to us.

For individuals with Developmental/Intellectual Disabilities and Autism (ID/A), the typical experiences can easily be tainted, skewed, misunderstood, or non-existent. Education in these areas is limited for children with disabilities, and even when that education is present, the information therein may not be retained or fully understood. Couple these factors with the high rate of abuse, neglect, sexual assault, domestic violence, high prevalence of paid caregivers, and institutionalization in the ID/A population, and developing healthy relationships with those around them becomes almost impossible. Therefore, it is ever important to educate and support the individuals we serve in the areas of healthy relationships and sexuality.

In a time where most feel disconnected from the world around them, it has never been more important to utilize a trauma-informed approach to support individuals in building and maintaining healthy relationships. The articles in this issue aim to support the supporters and inspire new ways to address the needs individuals with Intellectual and Developmental Disabilities and Autism have in these areas. The articles also address the essential components of understanding the effects of institutionalization, sexual assault, and domestic violence on relationship building. The reader will find ways to combat the effects on relationships in the face of necessary community restriction measures put in place as a result of the COVID-19 pandemic. By enhancing our understanding of these areas, we can help to build a community with meaningful and healthy connections and continue to move towards best practice for the individuals we support and serve.  

Positive Approaches Journal | 7

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Murray | 9-27

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In 1988, three researchers from the University of Michigan made what was for that time a startling claim, which was published in the prestigious journal, Science¹. Their work suggested that “social relationships, or the relative lack thereof, constitute a major risk factor for health—rivaling the effects of well-established health risk factors such as cigarette smoking, blood pressure, blood lipids, obesity, and physical activity.”  While the importance of social connectedness for good physical health is relatively well accepted today, this idea was somewhat shocking at the time. Moreover, fostering relationships as a critical component to safety and well-being remains a challenge today, especially for those disadvantaged by circumstance and/or need. ²

Social isolation activates chronic stress reactions in the brain. This causes marked elevations in cortisol, the body’s main stress hormone. Chronic and repeated exposures to elevated cortisol have negative downstream effects in the body including heightened cardiovascular and inflammatory responses—such as elevated blood pressure and heart rate, chronic pain, and increased susceptibility to illness. Furthermore, this chronic elevation in cortisol—essentially a constant hyper vigilant state, the famed “fight or flight” response—results in greater tendency for impulsive behaviors which can further potentiate these health risks through poor lifestyle choices such as smoking or overeating. Epidemiological research done with large community samples consistently demonstrate that those who are more socially connected live longer and healthier lives.³

The COVID-19 pandemic has made even more clear the wide health disparities which exist in our country.⁴ Individuals who are Black, Latinx, or Indigenous have more than twice the risk of dying from COVID-19 than White individuals.  Additionally, there are also socioeconomic vulnerabilities associated with COVID-19 mortality risk with individuals from disadvantaged backgrounds at highest risk. The pandemic and the enacted infection control/containment strategies have been especially challenging for intellectually and/or developmentally disabled (IDD) communities.⁵ At a time of extreme stress, individuals with very complex needs who benefit from high support and consistent routines were frequently provided neither. Furthermore, the community access restrictions enacted to limit the transmission of the virus revealed the social integration vulnerability many with IDD experience which increases their stress reactions (and all of its downstream ill effects) for a population already at high risk.

Social Integration Patterns for Individuals with Intellectual and/or Developmental Disabilities

Adults with IDD face greater challenges with social integration. Despite desiring a range of social relationships, they experience greater difficulty achieving true engagement due to skills deficits, inadequate supports, lack of opportunity, or some combinations of these factors. Lippold and Burns found that despite being involved in more community-based activities, adults with IDD have more restricted social networks than adults with physical disabilities. ⁶ Additionally, adults with physical disabilities had a greater balance of relationships with disabled and non-disabled people than adults with IDD. Social support and companionship for adults with IDD is mainly provided by family/caregivers, other individuals with IDD, and paid supports. For individuals with IDD, a key factor in determining successful social integration is the quality of their friendships—frequently by achieving greater balance in interactions with disabled and non-disabled peers.⁷

As the recent community restriction measures have painfully demonstrated, physical presence in a community through participating/attending community-based activities is not adequate for achieving true social integration in that community. As sites were restricted due to public health concerns, many individuals with IDD experienced heightened marginalization during the pandemic as their social integration was highly dependent on physically attending/accessing their familiar routine(s) rather than from the resultant relationships from community participation. In other words, much of their social connections relied on the scaffolding of shared experience (i.e. both doing the same the same thing at the same time) as would be seen with an acquaintance rather than shared friendship which would be less dependent on external structuring.

Evaluating Social Networks

Post-pandemic, opportunities to safely reintegrate individuals with IDD with their communities will create opportunity for reevaluating community participation activities and the needed supports to achieve greater social integration. Realizing the vulnerabilities that many individuals with IDD face due to their lack of social integration, supporting individuals to develop more robust social networks—comprised of different types of relationships with different types of social partners serving different needs and functions— is of high priority.

When considering social networks, there are a few key concepts to keep in mind.  Social integration refers to any type of social connection or relationships. Of note, this can range from the most superficial acquaintance to lifelong deep friendships. Social networks refer to the web of social relationships surrounding a person. This web crosses domains, settings, and includes relationships of varying degrees of integration.  Structural characteristics of social networks include^8,9:

Individuals with strong social networks display variability across these domains; in other words, an individual with a strong social network would have some relationships with high reciprocity and intensity and some with low.  The pandemic experience has demonstrated that many individuals with IDD social networks are dominated by relationships which are low in reciprocity, intensity, density, and bidirectionality, and high in formality and homogeneity leaving them highly vulnerable to social isolation when, due to public health measures, community settings and activities were not available to scaffold their social interactions.

Social relationships are collections of social behaviors superimposed over interpersonal emotions and attachment. These relationships can serve different social functions for an individual—that is what that relationship gives to the individual. Social capital refers to the impact of close, bidirectional relationships through providing high-value interactions and resources. Relationships which result in social capital are highly reciprocal and trusting. There are four primary forms of social capital: (1) emotional capital provides empathy, love, and caring; (2) instrumental capital provides tangible services or aid; (3) informational capital provides advice, suggestions, and information which can address problems; and (4) appraisal capital provides constructive feedback and affirmation.¹⁰ Relationships can provide more than one type of social capital and the type(s) of social capital can change with time and circumstance.

There are other potential social functions to relationships.  Social influence is the process by which thoughts, emotions, and/or actions are changed by the actions of others; this influence can be negative—such as imitating an acquaintance’s smoking behavior—or positive—such as exercising with a friend. Social hindrance is the process by which one’s attainment of goals is hindered by another’s expressed criticism or negative affect—such as an acquaintance making fun of the choice of a salad for lunch when someone is trying to lose weight. Companionship is sharing leisure and other activities with social partners—this is the function of many peer-peer relationships existing within highly structured social/leisure activities such as participating on a bowling team. Social support is giving and/or receiving support to another in the context of an ongoing relationship. This differs from social capital in that these relationships are not highly reciprocal and typically are unidirectional and highly formalized. Most consumer-support professional relationships have this function.

Relationships can have more than one function at any given time. Additionally, relationships are dynamic, and the functions of a relationship are likely to change as the relationship evolves. Most relationships which have a social capital function initially start with a lower function such as companionship or social influence; it takes time and shared experience to develop the reciprocity and trust needed for social capital. However, relationships with social capital are the ones most individuals find most meaningful and which enhance quality of life. Research has demonstrated that social capital is also most influential on health behaviors.^2,10,3

Supporting Social Networks

A helpful step in supporting the development and enhancement of social networks is to evaluate an individual’s current significant social partners and map how they potentially interact in his/her social network. Table 1 provides a tool to evaluate the structure, function, and potential social capital for an individual’s significant social relationships. Given the unique circumstances resulting from the pandemic, space is provided to provide assessment for relationship prior to enacted public health restrictions (“Pre-COVID-19”) as well as plan for the initial community reintegration (“Post-COVID-19”) and any long-term goals for relationship development (“Goal’). The individual should actively participate in the identification of significant social partners as well as plans/goals formation for potential relationship development as he/she is able. After completing these assessments for all significant relationships, any challenges to developing a strong social network for that person may be more apparent such as little variability in one or more structural components of the person’s network or little identified social capital. Table 2 provides opportunity to begin mapping the positive and negative components (contained across the sum collection of a person’s relationships) of the individual’s social network. Space is provided to document any identified missing components of the individual’s network; of note, any identification of missing components should reflect the individual’s self-determined social integration goals. This mapping might help identify goals for the individual and her/his support team. For example, increased planning for diversifying community exposures may be needed to address high homogeneity and low density across relationships. Similarly, identified social skill deficits interfering with the development of social capital can guide ISP or other goal-setting planning.

Typically, social network interventions in support of health behaviors take one of four form^8,9,11:

Social network interventions should always reflect the individual’s social integration priorities and are typically most productive when they utilize resources most meaningful to that person.

Case Example

Jillian is a 28-year-old woman with Autism Spectrum Disorder (ASD) and a mild Intellectual Disability (ID) who lives in a group home with 2 other individuals. Prior to pandemic public health restrictions, her high-value community activities included working part-time in a grocery store, attending a community center pottery class, and weekly shopping trips with her housemates. She has not done any of these activities for over 6 months. Her social interactions have been restricted to daily contact with her housemates, regular contact with her residential support staff, and weekly video calls with her sister and parents. Of note, she has not had contact with her coworkers from the grocery store—several of whom she identified as being “friends”—and people from the community center.

To prepare for eventual safe return to community-based activities, Jillian and her Supports Coordinator completed relationship matrix assessments for Jillian’s significant social relationships. Jillian identified her two housemates and two most favored staff as being the most significant relationships from her group home setting. She identified her sister, her parents, and one of her aunts as being the most significant relationships from her family. She stated that two of her coworkers and one of her peers from the pottery class as being significant social partners for her from her community activities.

After completing an individual assessment for each of the identified social partners, Jillian and her support coordinator mapped Jillian’s social network:

Function	Who: Relationship(s)	Where: Domain(s)	What: Supports to  Maintain Bond
Companionship	Maggie (housemate) Ella (peer) Teresa (coworker/friend) Bill (coworker)	Group home Community Center Work Work	No additional supports Transportation to CC Continued employment Continued employment
Positive Influence	George (staff) Bill (co-worker) Beth (sister)	Group home Work Family	Continued employment Continued employment Way to visit
Social Support	George (staff) Anita (staff) Beth (sister) Dominic (housemate)	Group home Family Group home	Continued  No additional supports employment Continued employment Way to visit
Emotional Capital	Mom Dad Aunt Sue	Family Family Extended family	Continued health Continued health Continued health, way to visit
Instrumental Capital	Mom Dad	Family Family	Continued health and financial stability (both)
Informational Capital	Mom Dad Aunt Sue	Family Family Extended family	Continued health Continued health Continued health, way to visit
Appraisal Capital	Mom	Family	Continued health
Negative Influence	Negative Influence	Negative Influence	Continued employment and overlapping shifts

They also identified Missing Components:

Function	Target Who	Target Where	Needed Supports and/or Skills
Increase all types of social capital	Beth	Family	Spend more time together and find more meaningful ways to interact
Find more positive influences	Ella	Community	Look for additional shared interests and ways to spend time together

After completing this exercise, Jillian and her team looked for additional ways of strengthening the two relationships which Jillian indicated were priorities for her. After having a discussion with Beth, the sisters decided to spend Saturday afternoons together as a way of increasing the reciprocity and intensity in their relationship which both admitted could be improved. Jillian was excited to share more of her sister’s life more routinely and soon added her sister’s boyfriend, Mike, to her list of positive influences as she got to know him better. Jillian’s Supports Coordinator worked with Ella’s supports broker to arrange for the two women to attend a Zumba class together which was also taught at the community center. Additionally, Jillian and Ella went out to dinner and a movie twice a month to spend time with each other outside of the community center. Ella also occasionally joined Beth and Jillian for lunch on Saturdays. At the three-month check-in when she and her Supports Coordinator remapped her social relationships, Jillian shared that she felt that her social network was both expanding and strengthening.

Conclusion

The pandemic has created physical, mental, and social health consequences for most Americans.  Due to their generally limited social networks, individuals with IDD may have been particularly vulnerable as the resulting social isolation created by needed public health measures led to significant social disengagement resulting in even greater overall health risks. Community reintegration efforts will allow for more thoughtful consideration of individual social integration goals and opportunity to address or strengthen identified relationship priorities. Examining the structural components of social relationships and then determining the function(s) of those relationships are critical to understanding an individual in the context of her/his social world. Mapping the interactions of these relationships helps identifies area(s) of strength and potential need. Supporting individuals with IDD to create robust social networks not only promotes higher quality of life and better health, it also can be highly rewarding work.

Social Network Evaluation and Planning Tools

Table 1.

Individual Relationship Matrix

Social Partner:	Pre-COVID-19	Post-COVID-19	Goal
STRUCTURE: (high/medium/low)
Reciprocity Shared support
Intensity Emotional closeness
Compexity Multiple functions
Formality Exists within
Density Interactions with other network members
Homogeneity How similar to you
Dispersion Near to where you live
Directionality Shared decision making
FUNCTION: Influence: Positive or negative Undermining: Interferes with goals Companionship: Shared activities and interests Support: Giving/receiving support in relationships
SOCIAL CAPITAL: (emotional/instrumental/ informational/ appraisal) For relationship high in reciprocity, intensity, and directionality

Table 2.

Positive Network Components

Function	Who: Relationship(s)	Where: Domain(s)	What: Supports to Maintain Bond
Companionship
Positive Influence
Social Support
Emotional Capital
Instrumental Capital
Informational Capital
Appraisal Capital

Negative Network Components

Function	Who: Relationship(s)	Where: Domain(s)	What:  Supports to Maintain Bond
Negative Influence
Social Hindrance

Missing or Underrepresented Network Components

Function	Target Who	Target Who	Target Who

References

1.      House J, Landis K, Umberson D. Social relationships and health. Science. 1988;241(4865):540 545. doi:10.1126/science.3399889.

2.      Cacioppo JT, Cacioppo S. Social relationships and health: The toxic effects of perceived social isolation. Social and Personality Psychology Compass. 2014;8(2):58-72. doi:10.1111/spc3.12087.

3.      Holt-Lunstad J. Why social relationships are important for physical health: A systems approach to understanding and modifying risk and protection. Annu Rev Psychol. 2018 Jan 4; 69:437-458. doi: 10.1146/annurev-psych-122216-011902. Epub 2017 Oct 16. PMID: 29035688.

4.      Berkowitz SA, Cené CW, Chatterjee A. Covid-19 and health equity — time to think big. New England Journal of Medicine. 2020;383(12). doi:10.1056/nejmp2021209.

5.      Baweja, R, Brownm S, Edwards, E, and Murray, MJ. COVID-19 pandemic and impact on patients with autism spectrum disorder, Journal of Autism and Developmental Disorders, under review.

6.      Lippold T, Burns J. Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability. J Intellect Disabil Res. 2009 May;53(5):463-73. doi: 10.1111/j.1365-2788.2009.01170.x. Epub 2009 Mar 19. PMID: 19302469.

7.      Green FP, Schleien SJ, Mactavish J, Benepe S. Nondisabled adults’ perceptions of relationships in the early stages of prearranged partnerships with peers with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 1995;30: 91-108.

8.      Glanz K, Rimer BK, Viswanath K, Heaney CA, Israel BA. Chapter 9. In: Health Behavior and Health Education: Theory, Research, and Practice. San Francisco, CA: Jossey-Bass; 2008:189-210. https://edc.iums.ac.ir/files/hshe-soh/files/%5BKaren_Glanz%2C_Barbara_K._Rimer%2C_K._Viswanath%5D_Heal(BookFi.org)(1).pdf#page=227. Accessed January 4, 2021.

9.      Stough LM, Ducy EM, Holt JM. Changes in the social relationships of individuals with disabilities displaced by disaster. International Journal of Disaster Risk Reduction. 2017;24:474-481. doi:10.1016/j.ijdrr.2017.06.020

10.  Forrester-Jones R, Carpenter J, Coolen-Schrijner P, et al. The social networks of people with intellectual disability living in the community 12 Years after resettlement from long-stay hospitals. Journal of Applied Research in Intellectual Disabilities. 2006;19(4):285-295. doi:10.1111/j.1468-3148.2006.00263.x.

11.  Simplican SC, Leader G, Kosciulek J, Leahy M. Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation. Research in Developmental Disabilities . 2015;38:18-29. doi:10.1016/j.ridd.2014.10.008.

Biography

Dr. Murray is an associate professor of Psychiatry and Behavioral Health at Penn State College of Medicine. He is the director of the division of Autism Services for Penn State Health and the director of the central region ASERT collaborative.

Contact information

Potter | 28-40

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1. Shapiro J. Abused and betrayed: The sexual assault epidemic no one talks about. NPR website. https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about. Published January 8, 2018. Accessed January 15, 2021.

Skiffen & Moonley | 41-50

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Tobolski | 51-59

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Like so many people with I/DD, all she really wanted was what I typically refer to as “the white picket fence” – a husband, a home, and a couple of kids. I often wonder when she began to believe that her dream – at least, this specific dream -- was no longer possible. Was it when she moved into the group home upon the death of her family caregiver? During one of her multiple psychiatric hospitalizations? Or was it when she was brutally raped by an ex-boyfriend? Maybe it was the moment she understood the implications of a hysterectomy to resolve medical issues. I wonder how her life may have been different if she had grown up in a milieu where sexuality and intellectual disability were not considered by most to be mutually exclusive – if she had been given the information she needed when she needed it. She has had experience with sex – she figured that out on her own. But the physicality of intercourse has done little to meet her basic human need for emotional intimacy, connection, and love, nor has it enhanced her ability to manifest those things in her life.

Identifying Needs

She is not alone. Many people with I/DD (self-advocates) struggle to recognize, develop, and maintain healthy relationships. When considering the multiple barriers to self-advocates expressing healthy sexuality and accessing sexuality education, three main themes have been identified in the literature: the perceptions of others, their perceptions of their own sexuality, and sexuality knowledge. ¹ Furthermore, “Sexuality and relationship development fall within many professionals’ scope of practice. However, there is no one profession taking the lead.”²

As a Health Care Quality Unit (HCQU) in Pennsylvania, we provide medical and behavioral education and technical assistance to supporters and self-advocates within a nine-county catchment area in northwestern PA. Since our inception in 2002, we have received increasing numbers of requests to provide individualized education for self-advocates on aspects of sexuality and relationships (consent, public vs. private, etc.). The knowledge and skills needed to form and maintain healthy relationships – including the ability to protect oneself from abuse – build upon each other. A brief training or two is not enough for most, so we began to consider alternatives. I was confident that we could implement a full sexuality education curriculum effectively; however, we are a relatively small HCQU. With two RNs, a Behavioral Health Specialist, and myself as potential educators, preparing for a comprehensive, lengthy training curriculum in addition to meeting our everyday training and technical assistance requests was daunting. Our fantastic team was up for the challenge!

Choosing a Curriculum

Our choice of curriculums was guided by the 6 Rules of Presentation outlined by Lisa Mitchell, LCSW-R – presentations on relationships should be simple, visual, individualized, repetitive, fun, and concrete.³ Our team unanimously agreed upon Positive Choices: A Program on Healthy Relationships, Sexuality, and Safe Boundaries for Secondary Students with Intellectual and Developmental Disabilities.⁴  It is easily modified for adult learners and has a consistent structure that allows for creativity in presentation. Visually, it uses a lot of photographs and large, clear drawings. It begins with three rules related to common themes throughout the curriculum that are reviewed prior to each class: respect, confidentiality/trust, and our legal obligation to report danger/harm to self or others.

Implementation

We work through the curriculum in order, using multiple modalities, including discussion, role play, games, and videos, adapting activities to meet the needs of each unique group. Participants fill out relevant pages in their student manuals and we encourage them to use their manuals as a reference beyond the completion of classes. Skipping the sections on puberty and offering one-to-one education, if needed, on monthly self-exams allows extra time for activities and reviews, as well as a celebration on the final day of class. We typically plan for 30 hours, which we present in small chunks over several weeks. The length and frequency of classes are ultimately determined by the group and the host site.

Participants

Thus far, a maximum of ten self-advocates per class has proved to be an appropriate number to promote participation while also providing for diversity of experience. Like any typical educational opportunity in the community, we do not request or receive extensive background information on participants. We know very little about them beyond what they choose to share with us. We do not currently accept adjudicated sex offenders, as they may require a therapeutic element that is beyond our scope.

We received several similar requests to provide sexuality education to self-advocates in the same area, making our pilot group easy to identify. They all lived in the community, either independently, with a significant other, or family. Most were or had been in at least one relationship. This group was contrasted by a subsequent group who all had one-to-one medical and/or behavioral supports and fewer experiences with relationships, both romantic and otherwise. These two diverse groups are representative of the marked differences in opportunity and experience that we have encountered thus far. For example, almost all of our pilot group were familiar with birth control and protections from sexually transmitted infections (STIs), while the opposite was the case for the one-to-one group. The pilot group was also much more informed about topics such as types of relationships, dating, the life cycle, and sexual orientation.

Involving Supporters

While our “no staff” approach was welcomed by our pilot group, consultation with a sexuality educator and our own experience brought the realization that, for some participants, having a consistent supporter with them allows for review of class content outside the classroom. It also provides supporters the opportunity to improve their skills to the benefit of not only the participant, but potentially everyone they support. Prior to bringing supporters into the classroom, we ask participants if they are comfortable having them there as fellow learners. Supporters sign the same student contract as self-advocates at the outset and are included in class activities.

Before our first scheduled class, I offer supporters (including Supports Coordinators, provider staff, and family members) an opportunity to view the curriculum content, ask questions, and express concerns. I also provide suggestions for enhancing learning outside of the classroom. Most expressed concerns relate to the person’s ability to self-protect from exploitation and abuse, STIs and unwanted pregnancy, and sexual behavior mistakes that are against the law. They can assess for themselves how well the curriculum addresses their concerns. I also point out how we will cover the foundational skills and abilities for self-protection by providing accurate information about anatomy and sexuality, so participants need not rely on potential sources of misinformation – peers, social media, and the internet. By building self-esteem, confidence, and assertiveness we can decrease the likelihood of participants complying with unwanted contact to gain connection. Positive Choices is about developing knowledge and skills to make responsible decisions and experience healthy relationships.

Data

Since much of the curriculum relates to “soft skills,” like empathy, responsibility, and problem-solving, it is more challenging to capture hard data regarding efficacy. The curriculum contains a rubric for assessing the person’s demonstrated knowledge and skills in all areas covered. Although lengthy, it is a simple check-box format, so we include it as part of the referral. By indicating which parts of the curriculum are less familiar to each participant, it guides our focus to the areas where people struggle most. We meet following each class to assess how our teaching modalities were received, as evidenced by attention and class participation. We ask each participant to complete an overall evaluation during the final class.  Reviewing activities throughout the curriculum identifies any need for remediation.

The most elusive feedback is whether attending Positive Choices has improved the person’s ability to make safer, healthier choices regarding relationships. Studies have shown that skills learned in sex education programs often are not generalized to real-life situations.⁵ In an attempt to reflect lasting changes, we collect data six months following the completion of classes. We send a blank rubric – the same one we used as part of the referral – to each referrer for completion based on current presentation. The reliability of our data is impacted by difficulties having the same person complete the rubric. Supporters aren’t always in the same role with the same level of contact at the time of follow-up. Some have simply not been returned, particularly since the onset of the COVID-19 pandemic.

The rubric considers 46 specific skills and ranks the person’s ability for each as Excellent (3), Satisfactory (2), or Developing (1). Assigning a numerical value to each allows us to quantify changes. For example, improvement from Developing to Satisfactory is denoted as a +1 change, while Developing to Excellent is +2. We are then able to compare and score improvement for each individual participant as well as the whole group. Our pilot group has the most complete data, with scores for seven of the nine participants (two moved away prior to follow-up). Among these seven, change scores range from 10 to 54, with a mean of 35 and a median of 36. The total change for the group was 246.

Challenges

While we have prepared for and met many challenges along the way, there are still difficulties for which we have no clear solutions. While all our county Administrative Entities (AEs) have expressed the desire for classes in their areas, we have struggled to find host organizations. Some express concerns about the content of the class and its appropriateness to their environment, while some wish to avoid potential negative reactions from family members.  These concerns tend to persist despite assurances that the classes are voluntary; and supporters -- including parents -- will have the opportunity to learn and ask questions about the curriculum to make an informed choice. We encourage parents in particular to attend informational sessions, as they have been found to benefit from education to increase recognition of their son/daughter’s sexual interest and need for sexuality education.²

Supporters readily identify self-advocates who would benefit from the class but do not have transportation to the host site. This occurs most often with those living independently in the community – those most vulnerable to misinformation while attempting to navigate relationships and protect themselves, typically doing so without a 24/7 support system. While our search for accessible in-person host sites is currently on hold, we are exploring the viability of live online classes during the pandemic. Our challenge is to ensure that the classes remain activity-based with minimal lecture, despite a virtual format.

Conclusion

I believe that the greatest benefit of implementing a sexuality education curriculum is the opportunity it provides for self-advocates (and their supporters) to both learn with and from others. They begin to discover their own power to recognize dangers and protect themselves from being used or hurt. They receive the information they need and build skills to make healthier, safer choices. Relationships improve. A Program Specialist with a provider agency in Pennsylvania reported that attending Positive Choices classes “helped [her] understand that other people have these difficulties too, since it was a class with her peers. At first she would ask to leave class because there were other people [there]…By the end of the class she was planning lunch dates with other members of the class.” It is worth the time and effort when you can help people be safer, more knowledgeable, and maybe just a little less lonely.

VanEerden | 60-72

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Social Media and Disability

Connectedness is therefore, attempted more frequently on the internet via social media. Instagram, Facebook, and a plethora of other social meeting places are available to anyone with a device and Wi-Fi access. Being able to access the internet as a connection to social media is also true for people with intellectual disabilities who may also have other cooccurring mental health disorders. According to The Arc’s position statement “people have the right to access, discover and explore both sexuality and social media however, people with intellectual disabilities are a vulnerable population and this access causes concerns for both families and other caregivers”.⁴ According to the Traumatic Stress Institute, a developmental disability is a very broad term encompassing people ranging from intellectual disabilities to autism spectrum disorder to medically related impairments.⁵ In addition,"Folks with intellectual disabilities are the perfect victim. They are people who often cannot speak, or their speech is not well-developed. They are generally taught from childhood up to be compliant, to obey, to go along with people. Because of the intellectual disability, people tend not to believe them, to think that they are not credible or that what they are saying, they are making up or imagining. And so, for all these reasons, a perpetrator sees an opportunity, a safe opportunity to victimize people".⁶

Establishing Guidelines

It is important that families, caregivers, and support people, in general, understand and consider how to safely navigate sexuality and connectedness within the realm of internet access to social media. It is important that the needs of each person are considered individually. Human realities must also be considered. These are that, regardless of abilities, most people are sexual beings and people are unique sexual beings with biologically, socially, and culturally determined values.⁷ Guidelines must also be considered to promote and honor individual needs, desires, preferences and safety. In 2018, the Pennsylvania Office of Developmental Programs devised broad guidelines for people to maintain an Everyday Life to preserve their individual rights regarding sexuality and relationships. These guidelines are⁸:

Individuals with disabilities have the right to have their sexual health and personal relationships supported by knowledgeable provider agency staff and a knowledgeable Individual Support Plan team.

While these guidelines are helpful in maintaining people’s rights and inclusion, it remains a concern to caregivers of vulnerable populations how to honor and ensure these rights safely. When exploring and utilizing the internet and social media these concerns, as well as the complexities of sexuality, are many. These can include but are not limited to health education, attitudes, overall knowledge, capacity, and consent.

Decision Making, Capacity, and Consent

“People with intellectual disability (ID) can experience deficits in thinking, problem solving, and decision making, which may hinder their full and effective participation in society on an equal basis with others. Lack of capacity can prevent participation in many of the activities that form part of daily life, with major implications for the person with ID”.⁹ According to Hagiliassis and DeMarco¹⁰, the concept of decision making has changed in the last decade. A shift from protectionism to an approach attempting to achieve balancing duty of care and dignity of risk is occurring. Hailiassis and DeMarco also state that there is no one way to assess capacity and it remains greatly dependent on clinical judgement.⁹

According to the Adults with Intellectual Disabilities Capacity to Consent to Sexual Activity, Pennsylvania Coalition Against Rape, 2017; key questions for assessing the capacity to make a specific decision might include whether the person¹⁰:

Is aware of where to go for more information, or about relevant complaint processes

A person’s capacity can change at any given time for many different reasons. Some of them are¹⁰:

Consent is another topic that needs to be taken into consideration when sexuality and relationships on and off the internet are being entertained. “Under Pennsylvania law, sexual contact with an individual who has a ‘mental disability’ that renders him or her ‘incapable of consent’ constitutes a felony, regardless of whether force was used (18 Pa.C.S.A. §§ 3121(a)(5), 3123(a)(5), 3125(a) (18 Pa.C.S.A,3121(a)(5), 3123(a)(5), 3125(a)(6), 3126 (a)(6). ¹¹ It is critical to remember that a diagnosis of intellectual disability by itself, does not automatically mean that a person lacks capacity to consent to sexual activity. The presumption that a person with ID who engages in sexual activity is a victim would essentially nullify the sexual rights of people with ID”.¹⁰

Education and assessment regarding consent and capacity are vital in navigating relationships and sexuality. The Pennsylvania Office of Developmental Disabilities, 2018 guidelines recommend that “a person has the right to accessible and appropriate education, information, and resources that address their individual personal relationships, sexual health, and sexuality needs”. ⁸ These services are available through medical, clinical, and other therapeutic entities that can be accessed through state funding, private pay, or contracting with organizations who can provide these types of clinical expertise.

According to William Taverner and Christopher DeMarco¹¹, who developed a tool to assess if, through an overall clinical impression of a person’s capacity to give informed sexual consent, can develop safe practices and plans related to a person’s rights and responsibilities. The tool does not provide a legal determination of a person’s capacity to give sexual consent. The following are five principles that are assessed to make a clinical determination and are only part of the assessment itself¹¹:

Demonstrates the ability to identify harmful situations and to avoid being exploited and harmed.

Along with consent and capacity the concept of human needs must be addressed. Human Needs, defined by the Glasser Institute for Choice Theory 2020¹², includes the following:

These human needs, when applied, connect to one’s relationships. Relationships can connect to sexuality. It is important that these concepts are examined more closely. Glasser’s Theory supports that if these human needs are not satisfied, people will seek them out. Within the theory’s assumptions, human needs must be met to experience contentment. These needs can be met in a responsible way, which is defined as not violating the rights of others. These needs can be met in an irresponsible way which is defined by violating the rights of others. When sexuality is thought of in these terms and applied to vulnerable populations, the impact of trauma can occur quickly without the proper tools, understanding, and knowledge to promote healthy and safe choices.¹²

According to Glasser¹², the other concepts that are important to relationship building are Connecting Relationship Habits which are the actions of: supporting, encouraging, listening, accepting, trusting, respecting, and negotiating differences. There are also Disconnecting Relationship Habits. These habits include criticizing, blaming, complaining, nagging, threatening, punishing, bribing/rewarding to control. When support professionals and other caregivers engage in the connecting relationship habits, they will be able to promote safe progressive development with a person in a trauma-informed way rather than engaging in the disconnecting relationship habits which may cause harm and/or trauma.¹²

Glasser’s Theory¹² has a simple listing of Human Needs that can be defined specifically and lends itself to specifically defined safety i.e. responsible vs. irresponsible behavior and choices. Since this is a human needs framework, people with intellectual and developmental disabilities must also understand these relationship habits to remain safe and to progress in their growth and development. When teaching these abstract skills, it is important to know a person’s learning style. Long, involved verbal directions and lengthy “lecturing only” methodology are ineffective teaching methods for most audiences. Most people are kinesthetic learners which means doing task in a “hands-on” way or “show me instead of tell me” are more effective than abstract styles. A hands-on approach is particularly helpful for students with ID. “They learn best when information is concrete and observed”.¹³ Visuals, videos, roleplay, and modeling are powerful teaching tools to use. Hands on learning and practice will often assist people in retaining information that they receive from trusted family members, trained clinicians, and caregivers.

Conclusion

In conclusion, the internet and social media can be a high-risk opportunity when education is not specifically applied. Exploitation and victimization can occur when a person’s human needs are not met and when they do not have the tools to meet their needs responsibly. Education and assessment are vital components to assisting with healthy, safe, connectedness within relationships and as people explore their sexuality. The ability to consent and current capacity must be taken into consideration. An educationally based curriculum is also necessary to assist caregivers, clinicians, and support professionals in navigating the pleasures and risks of social media and the internet. Community organizations such as the Pennsylvania Health Care Quality Units as well as the Pennsylvania Coalition Against Rape along with other providers of intellectual and developmental services such as Merakey use different resources and modalities to teach and promote protective skills. It is important that assessments and educational curriculum with methodologies that are proven successful with people with intellectual and developmental disabilities are used to promote growth and development as well as to increase health, safety, and wellness.