Findings on the State of Specialized Sexuality Education

Findings on the State of Specialized Sexuality Education

Type
Next Actions
Priority
Status
What was done
Year
2011
Date
Contents:
Introduction
Figure 1: Rates of Sexual Abuse and Assault in the Typical and Disabled Communities
Figure 2: Additional Assault Statistics, Typical and Disabled Community
Figure 3: Who is Committing Assaults in the Disabled Community
Figure 4: Prevalence of STIs in the US
Survey Findings
Examination of Organizations Providing Sexuality Education:
Outsiders, UK
Vita Community Living Services
Review of select curricula:
F.L.A.S.H. (Seattle/King County School District)
Sexuality and Disability: A guide for parents (Alberta Health Services)
Asperger’s Syndrome and Sexuality by Isabelle Hénault
Sexuality Education for Children and Adolescents with DD (Florida DD Council, Inc.)
Sources
Other Coursework:
Appendix A: Slideshow explaining ways to combat the systemic problems in Sexuality and Disability Services, from UWW340, Experiential Reflections of Organizations
Appendix B: Strategic Plan for the Be Frank Educational Collaborative, from Strategic Planning for Nonprofit Organizations

In 2000, Dominic Davies, a UK based sex therapist focusing in the training of professionals to provide care and support to clients of the sexual minority, presented what could be viewed as both a best practices and biggest problems overview of creating sexuality education programs. In this presentation, he listed three reasons for the lack of education for people with disabilities in the area of sexuality:
  1. “Lack of physical and financial access to where the rest of society work and play has meant we are disadvantaged in opportunities to meet people and acquire sexual and relationship skills through practice and normal socialization processes. Life in residential institutions or with our families is often policed to ensure we don’t develop intimate relationships.
  1. Lack of positive role models and low self-esteem generated by shame about our bodies from the messages we receive from those around us, can create psychological barriers as great as any in the built environment to our believing in our capacity to participate in sexual relationships. Many disabled people have never experienced loving sensual touch. Our experience of touch is being poked and prodded in having our most basic personal hygiene needs met. We may not know what kinds of touch feel good on our differently formed bodies.
  1. We are often excluded from sex education lessons, rather than given some education geared to our specific needs and situations. We may need for example to learn about specific positions which would enable us to give and receive sexual pleasure, ways of managing pain and spasm, how to deal with the physical adaptations which enable us to function in the world but which may become obstacles in sexual relationships.” (Davies 189)
This list encompasses the universal reasons people with disabilities don’t receive sexuality and social skills education.
Davies goes on to outline the ways education can be provided on a multilevel basis: agency-wide, individual, and professional. He proposes that sexuality education be taught by teams of people with disabilities and trained educators, preferable representing a breadth of gender and sexual identities. On the individual basis, he leaves it at the discretion of people with disabilities to ask for help which leaves out a large part of the ID/DD community, who may not be aware they are lacking knowledge in the first place. The aspect of his “How” section that rings truest with me is the call for more “module-based” professional education. While there are some academic offerings in either intellectual disability or sexuality, there are none that specialize in both, or even make a connection between the two. Even though I have been searching for them, at UMASS, HCC and Salem State, I have only encountered one course that even talks about the sexuality component in ID, or that people with disabilities have sexuality. This was in a course looking at ID and Mental Health dual diagnosis, and it was offered as an explanation of some of the more challenging behavior issues—right between feeding problems and constipation.
One of the major roadblocks for sexuality education is funding, especially in this economic climate of slashed budgets and chronic understaffing. Sexuality education is generally seen as a one-time solution to a problem, rather than as an ongoing approach to preventing them. This approach is irresponsible at best. Elizabeth Canfield, a sexuality educator and lecturer, made an apt analogy:
“I’ve often wondered what it would be like if we taught young people swimming in the same way we teach sexuality. If we told them that swimming was an important adult activity, one that they will all have to be skilled at when they grow up, but we never talked with them about it. We never showed them the pool. We just allowed them to stand outside closed doors and listen to all the splashing. Occasionally, they might catch a glimpse of partially clothed people going in and out of the door to the pool and maybe they’d find a hidden book on the art of swimming, but when they asked a question about how swimming felt or what it was about they would be greeted with blank or embarrassed looks (or told they weren’t old enough to know.)
Suddenly, when they turned 18, we would fling open the doors to the pool and they would jump in. Miraculously some might learn to tread water, but many would drown.” (PPIN)
In this case, rather than drowning, people with disabilities are being victimized by abusers, contracting STIs and being labeled as sex offenders, in many cases because they lack the information needed to avoid these outcomes.
Sexuality needs to be addressed proactively is to aid in abuse prevention. Because self-reporting is rare and in the past, was seen as unreliable which made prosecution of crimes against people with ID difficult, most information about abuse statistics come from recorded histories, word of mouth, and medical evidence of sexual activity. Rates of abuse and assault are at epidemic levels.
While no one would outwardly say they are for the assault and abuse of people with disabilities, lack of forethought and training of direct service staff, as well as systemic issues in hiring, such as insufficient background checks and the lack of follow through in defining relevant policies and expectations until a problem has occurred, contribute towards those ends. Pat Carney, the sexuality and social skills staff trainer for the Commonwealth, had this to say about this dichotomy: “We must challenge ourselves to act in ways that are congruent with what we say we believe.  Our conversations should focus on identifying the skills people need to pursue healthy relationships, and creating environments where it can happen with manageable risk. We need to teach people social skills and the legal, social and safety rules that guide healthy relationships.” (Q&R Brief #4).
People with disabilities are at a higher risk for sexual abuse, assault and rape than any other socially constructed population with estimates placing the level of abuse at 1.5%-3.4% higher than typical peers. With the national statistics for prevalence of sexual assault or abuse being 17% for men and 25% for women, it is more likely than not that a people with disabilities will be assaulted in their lifetime, with reported statistics putting men with disabilities at 32% and women between 39 and 83%. One of the best strategies for preventing abuse is sexuality education, starting from an early age.
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Figure 1 (DPPC, NCDSV)
Although the general stigma attached to the sexuality of people with disabilities is becoming less, many people still hold on to the belief that comprehensive sexuality education is inappropriate for young people with disabilities, citing a plethora of reasons.  People with disabilities will find sex education confusing or won’t understand it. People with disabilities will get the idea that sex is ok. If we teach people with disabilities about sex, they will become sexual predators because they can’t control their impulses; if we teach people with disabilities about sex, they will want to have sex and then they will make babies, who will be a burden on society. People with disabilities have no interest in sex.
Contrary to public opinion, people with disabilities are interested in sex, and demonstrably have an earlier entrance into the sexual world than their typical peers. In their paper, “Sexuality of 15/16-Year-Old Girls and Boys With and Without Modest Disabilities, “ Elinor Brunnberg, M. Lindén Boström and Mats Berglund used the Swedish Life and Health: Young People 2005 and 2007 survey to support the theory that young people with disabilities are engaging in sexual concourse. The survey was voluntary and self-reporting, meaning that the students were answering the questions and data was culled without corroboration.
The collected data was from approximately three thousand students in what would equate to their junior year of high school and asked them to complete a survey regarding their sexual debut, living environment, use of drugs or alcohol and attitude towards school. When the data was interpreted by the authors, it showed not only that people with disabilities were engaging in sexual intercourse, but were more likely to have had sexual intercourse than their typical peers. The margin between the categories of non-disabled youth and several categories of people with disabilities (including hearing impairments, learning disabilities, motor disabilities and intellectual disabilities) ranged from 10-25%.
Furthermore, a study from Pamela Pinkston Scenario at University of Wisconsin, Oshkosh offers more a more detailed breakdown of abuse. Compared to the typical population, people with disabilities are 70% more likely to be assaulted. Another startling gap between the typical population and people with disabilities regards the likelihood of multiple assaults. In the typical population, women who have been assaulted once are 39% more likely to be assaulted again. In the disabled community, the likelihood is only 49%, but represents an incidence of ten or more assaults.
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Figure 2 (DPPC, UWOSH, NCDSV)
The largest disparity is between the percentage of disclosed assaults and assaults that are reported to law enforcement. In the typical community, of the 25% of assaults disclosed to interviewers, counselors and crisis workers, 16% (of the total) are then reported to the authorities. (NCDSV) According to the DDPC, of the 62% of assaults that are reported, only 3% are filed with law enforcement.
The UWOSH data shows in the disabled community, the biggest danger lies at home. Nearly all assaults are perpetrated by people known to the victim, with only 9% of perpetrators falling into the “strangers” category, compared to 20% in the typical population. Knowing that the majority of perpetrators are also in the category of people who identify as protectors informs the course of action for reducing assaults: education of staff and people with disabilities.
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Figure 3 (UWOSH)
Another area that indicates the need for sexuality and social skills education is found in the breakdown of sexually based incidents reported to the DDPC. According to the DDS Quality and Risk Management Brief from May 2011, the results of an agency wide, voluntary staff survey and an assessment of the 2010 incident report, while sexually based incidents made up only 1% of reports during the year, 72% of those incidents were classified as “misbehavior of a sexual nature” rather than “aggressive sexual behavior.” Misbehavior of a sexual nature most likely means that instances like exposure and public masturbation. Aggressive sexual behavior can mean incidents such as assault or unwanted touching.
The report further elaborates that of the 42 respondents to the survey, 71% provide some type of sexuality and social skills education to some of the individuals they serve. In contrast, 7% of the respondents indicated that education was provided to all people with disabilities. The survey showed that 41% of training is done by certified sexuality educators. The percentages seem reasonably high and offer a promising look at breadth of provided sexuality education and its general direction.
With overwhelming evidence that sex is a very real part of the lives of people with disabilities, whether consensual or not, and the postulation that many incidents in which people with disabilities are the perpetrators of sexual missteps can be corrected, the focus is slowly shifting to preparation and education as necessary parts of abuse prevention and the promotion of whole lives. For some perspective in the above numbers, DDS employs 7657 people, over 6500 of who fall under the classification of direct workers—those who work in a close, face to face capacity with the people with disabilities served. This does not encompass any subsidiary agencies, such as Behavioral Health Network and the Seven Hills Foundation, each of whom employ over 1000 direct service professionals. Within the DDS umbrella, there are less than 100 certified sexuality educators. (Q&R Brief #4, Masslive.com)
Compared to the DDS employees, the respondents—from all of the provider agencies—represent less than .5% and certified sexuality educators represent less than 1%. Experience in the direct care field within DDS and as a certified sexuality educator makes it difficult to synthesize the percentages reported from the survey to the whole of DDS. In research conducted in an independent survey, respondents were more likely to be concerned about the way staff handled difficult situations regarding sexuality. In both surveys, more than half of the respondents stated that their agency did not have any formal sexuality policy or a system in place for assessment and referrals within the agency. The general consensus in the independent study, which was empirically shown in the Risk management survey as 55%, was concern that education happen only after a problematic behavior occurs.
The above factors—rates of abuse and assault, statistics showing sexual activity in people with disabilities, and indicators that lack of education and reactionary policy exacerbate these issues— show that the problem has some roots in the DDS organization. Agencies need to be firm in their support of sexuality as a natural part of whole life. Policies that essentially say, “we will deal with it when we have to,” do not support the people supported by the agency in a healthy and proactive way. By neglecting to foresee issues and head them off with education, the agency sets up its constituents to fail and puts them in harm’s way.
Along with the abuse prevention aspect of sexuality education, there health implications inherent in refusing to teach people with disabilities. The total number of Americans who currently have an STI is 21%. In the general population, people with disabilities with an STI represent 6% of the population. When adjusted to represent the portion of the disabled community, STIs have a 38% prevalence.
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Figure 4 (Census Bureau, CDC)
While there are no studies on the effects of comprehensive sexuality education and its benefits for people with disability, one can extrapolate an outcome from research surrounding the benefits of abstinence-only sexuality education for adolescents.
In the debates surrounding sexuality education and reproductive freedoms in the US, there are a number of claims and concerns that align with the struggle for sexuality education for people with disabilities: they won’t understand the consequences; they aren’t interested; if we teach them about it, they will do it; this doesn’t align with my values. While all of these are nice talking points in political discussions, research does not bear them out.
As shown in the Brunnberg study cited above and by a federally funded study of four abstinence-only education programs across the country—teens, with or without disabilities, are having sex whether they learn about it or not. The study of abstinence-only programs shows that the curricula only increase knowledge of STIs by a marginal amount (between 2-8%) in participants. (Trenholm). With this gap in knowledge being clearly identified in the typical community, transferring the findings to people who have cognitive impairments that limit the amount of information that can be inferred from means other than specific sexuality education classes, the difference must be larger.
The education needed on behalf of agencies is two-fold. People receiving services need to be educated so that they can make informed choices and identify an assault if one happened. They need to know the physicality of sex acts and that they have a right to say no. Staff need to be trained on how to deal with questions and situations they may be uncomfortable with and how to respect the privacy that surrounds a person’s sexuality. Staff also need to be trained to recognize signs of abuse and a cultural shift needs to be made to ere on the side of misreporting rather than underreporting abuse to avoid confrontation with coworkers.
In Massachusetts, registered sexuality educators all take the Sexuality and Social Skills Training of Trainers course through the DDS office of Learning and Development, taught by Pat Carney. The training of trainers description is as follows:
“Quite often, people with developmental disabilities are not provided with adequate education and support to develop a positive and healthy sense of their own sexuality and its expression.  Lack of information, support and interpersonal skills increase a person’s vulnerability to exploitation and abuse, and can result in decisions that put her or him at risk of injury, emotional trauma, and involvement with the criminal justice system.
“Although family members and support staff understand the need for education about sexuality and opportunity to practice social skills and making good decisions, they also frequently feel unsure of how to approach sexuality education with someone, or wonder whether it is wise or necessary to do so.
“This eight-day training of trainers will prepare human service support staff to provide well-informed, current, and values-sensitive education and support to individuals with developmental and intellectual disabilities.  Participants will gain information and understanding about sexuality, human development and the impact of life experiences on self-awareness, self-esteem, and sexual behavior.  They will also develop skills to provide 1:1 and group learning opportunities for the individuals they support”. (Communitygateway.org)
As mentioned above, the sexuality educators group makes up a negligible portion of disability services workers in the Commonwealth, and appears to be one of, if not the only organized movement of people working towards the full, supported inclusion of people with disabilities in comprehensive, adaptive sexuality education methods in the United States.
I accessed the Sexuality Educators Network to ask for some perspectives on the state of sexuality education as it is currently provided to people with disabilities, and how they would like to see it changed in the future. In the responses to the survey, I received feedback from specialized sexuality educators, professional and direct care staff, family members, and sexuality educators for the typical community.
Those responding to the survey offered insight that aligned with the Q&R Survey referenced above. Some of the responses (to the question “What would you change about the way that sexuality is currently taught to people with developmental/intellectual disabilities?”):
“Make it more available from a younger age/more accepted/teaching parents too so that parents understand the risks of not educating their sons and daughters.
I feel that more opportunities around learning about healthy relationships is necessary for the population being served.
I would assess the sexuality education needs of everyone who uses DDS supports, and dramatically increase the number of educational groups available.
More focus needs to go toward staff and managers in helping them to realize that it’s not "taboo."
I think what needs to change is that agencies and parents need to realize that people are sexual beings and have needs and those needs need to be addressed.  Proper education is the only way to ensure that people are safe (pregnancy, STD's, rape, etc.)  and that they have appropriate sexual experiences (whether that is with a partner or not).
I would ensure that the basics are taught as early as cognitively appropriate, improve training for direct care staff, and if an agency has the resources, advocate for a sexuality trainer to be added to clinical teams.
It should be taught as a matter of routine, just as ADL (activities of daily living) skills are. However, there needs to be more thought put into WHEN it is taught, taking into consideration where the person's interests and abilities are at the time.  The current curriculum in most public special education is done by the person's age, not his/her readiness.
I think we need to teach more.  I haven't been to any trainings where the trainers are teaching people with disabilities but I would definitely be interested in attending one to observe.
Access is the biggest issue.  So, I would change its availability and accessibility. Currently, we have very few educators who can offer training on a fee-for-service basis, agencies are not prioritizing sexuality education within their own client group, and most educators have "real" jobs which are more than full time commitments, leaving little time to develop lesson plans and offer their services.  I would eliminate all of these barriers.
To be more open about the topic, not shameful, reinforce that it is great to be learning about the topic.
I can't say I have seen enough teaching to have a strong opinion about this –which may be saying something! I say I'd like to see it taught MORE! It seems like a topic that isn't addressed "out in the open" as it (in my opinion) ought to be.
I would appreciate a base of information and guide to specific areas that should be included in running groups.
I would say that it needs to begin at the same time sex education starts for typical students. More people with DD/ID need access to sex education that is tailored to their needs and interests.
To start at an early age and to do a lot more of it as most public schools ignore it and there has not been any emphasis on teaching this to people with developmental delays. Start at an early age when they are in school.  Also educate the public.”
The response is clear—there is not enough access and availability of education now, and that people would like to see sexuality education integrated into the everyday lessons provided in support settings.
When answering the question “What do you want for the future of sexuality education for people with developmental/intellectual disabilities?” the responses were not unreasonable:
“For all people with DD and for all staff to be educated to support them to have Relationship and Sex Education. A standard curriculum to be taught in the public schools and more clinical support teamed with educators to provide the highest degree of support and education to truly help people with disabilities develop their sexuality along with meaningful relationships where their emotional and or physical needs are met.
I was sex education for people with DD/ID to be mainstream and expected.
I want for all developmentally delayed individuals to be educated in order to make informed decisions regarding their health, safety and sexual choices.
Happy, healthy, open and honest sexual relationships for people who want them! I would like to see people in the field providing opportunities and education for people that truly empowers and supports their sexuality. This means not just "getting through" a quick sex ed class here and there. Instead we should be using the time and energy to find out what people really know, and give them the tools, knowledge and opportunity to discover their own sexuality.
Equal rights not just in theory but in practice.
I want it to be taught in everyday life to the people with disabilities.  I would like families to not be afraid and to be open to teaching their children at an early age.  Early education would be my hope
Decrease the taboo, improved training for staff in regards to GLBT choices, improved training for medical personnel in regards to sexuality issues with the ID population, and easily accessible resources for staff and individuals
It should be part of the criteria in all programs just like health is in the school system.
I believe it should be offered to every individual in a developmental appropriate approach.
I'd like to see everyone receiving the information and support they need in order to thrive.
I want more opportunities for education in this field tailored to serve this population.  I feel that there are not enough opportunities at this time to provide this service and it is a very important topic to have knowledge about.
More public awareness of need: More people need to be aware of the need for more extensive training than is currently available through the special education programs in the school systems.  Many people with developmental/ intellectual disabilities cannot "figure it out for themselves" with only the minimal factual education most of these programs provide. Also, the fact that there are people available to do training with adults remains a mystery to many of the professionals involved in developing the goals and services for adults with disabilities.
Available to EVERY person as basic as human rights training...opportunities for education throughout their life, not just a one-time session!
The same thing I'd like to see for everyone—an understanding of personal comfort levels and boundaries and an ability to express and enjoy sexuality (however that expression may be).
That it is a lifelong learning opportunity That people have more and better opportunities to learn from experience in their own lives on a regular basis That the people who control access recognize they need to get out of the way of learning That sexuality education become a regular part of the school program for "transition" age students, from AT LEAST 14 years on, and that the education provided be real life, experiential, geared toward helping them approach adulthood somewhat prepared for the rest of their lives That education is not seen as an end in itself, but as an adjunct and support for people in their pursuit of the ‘right one.’"
The desire for access and education being a clear deficit in the Massachusetts disability services system is clear. The lack of proactive educational support for people with disabilities is a nationwide problem, and like in the Sexuality Educators Network, small pockets of supporters are showing up to address the problems by offering their own classes and creating their own curricula, but are still largely unconnected from the larger network of educators.
In the Sexuality Educators Network, many of the educators are given the job of “sex person” as an adjunct to their already packed job description, and for many, the additional duties are a labor of love. Until recently, it was extremely difficult for sexuality educators who were interested in working independently from their home agency to provide education services had a near impossible time being paid. I, personally, ran into the same problem (which was part communication, part marketing and part lack of funding) and ended up co-teaching a six week course without pay. In passionate human service workers, it is not unusual to see people putting their own wants, like the desire to be paid for one’s time and skills, aside to fulfill needs, like providing sexuality education to someone who has had an incident that needs to be addressed.
Recently, the regulations for Commonwealth of Massachusetts Requests for Response, the bidding system through which independent contractors can submit bids and be paid without the involvement of a provider agency, were changed to include sexuality educators. There is an thorough application process, but once an educator is approved, they will be able to be bill the Commonwealth directly for services. This is a step forward for educators and for the availability of sexuality education for people with disabilities, but there are still roadblock in place.
Below, I outline two organizations that have characteristics that align with the tenants Davies outlined in his presentation and discuss how they translate into the idea for the Be Frank Educational Collaborative—the organization this study precedes. Following the review of organizations are a look at some available curricula and guides available for teaching sexuality to teens and adults with disabilities.
Name: Outsiders
Location: United Kingdom
Structure: NPO, Member Organization, education, helpline, disability centered dating service, Professional staff alliance, Policy development
Mission: Provide a safe, private social, self-help and peer-support club for people with physical and social disabilities. Through projects and example, we improve the acceptance of all disabled people as sexual partners.
Summary:
In their 2009-2010 Annual Report, Outsiders states three objectives: to run a membership-based club for people with disabilities; to further the goal of large scale acceptance of whole and fulfilling personal lives for people with disabilities; and to offer education and support to organizations looking to work collaboratively toward the same ends. Beyond that, Outsiders has several tiers of satellite organizations that work in different capacities to spread their mission. (p. 6-7)
The primary group are the members, people with disabilities looking for friends and partners, information, and opportunities to connect socially with other people with disabilities. The second and third groups outlined can be lumped together under the heading of supporters. The first are lay people—families and allies of people with disabilities who support open sexuality. The second group is comprised of professionals in the field and is a separate member organization, SHADA (The Sexual Health and Disability Alliance). SHADA members are “medical, health and social care professionals, therapists, and managers of colleges and residential homes, who care about the personal needs of their disabled clients.” (p. 8) Outsiders also aims to bridge their supportive community globally.
Outsiders has two other satellite organizations that are particularly interesting and, if not wholly unique, underrepresented in the pantheon of disability service. Outsiders runs a helpline, staffed by organization founder, Dr. Tuppy Owens, a sex-therapist and activist who answers social and sexuality questions, and Dr. Ruth Hallam-Jones, a psychotherapist who handles questions with a medical aspect. The helpline offers advice in house, but also has a breadth of experts to refer callers to.
The second is their support and connection with Spokz, a UK based adaptive design service run by Steve Dent, who had a spinal cord injury that confined him to a wheelchair. The basis of Spokz products centers around adaptive sports equipment, mostly performance wheelchair adaptations like off-roading wheels and quick-release axel pins. Recently, Spokz has branched out, offering a line of adaptive sex aides. While most of the aides use commercially available products, Spokz offers in-home assessments for people with disabilities. This is innovative in a number of ways. Firstly, it acknowledges the sexuality of people with disabilities, and further addresses the need for adaptive equipment to reach orgasm. Second, it has the potential to function as a one-to-one training service that sets customers up with the correct product and the knowledge needed to successfully use it. When compared to what seems to be the common practice in the US disability field of acquiring the cheapest sex toy possible, having a short conversation about its purpose (in the better situations) and then leaving the people with disabilities to do masturbate clumsily and possibly  without climax, the Spokz model is light-years ahead.
Outsiders and SHADA also have a hand in creating best practices policy advice. Currently, on the SHADA website, are eight comprehensive guides to developing and implementing sexuality guidelines in different areas and several examples of sexuality policy. Each of these guidelines reinforce comprehensive education and support. They specifically address issues like confidentiality, privacy, personal care, partnership and parenthood, and sexual health.
One of the places where Outsiders substantially deviates from the forming ideals of the Be Frank Educational Collaborative is in its requirement that all member be “over 16 years of age who is able to understand the concept of Outsiders and run their own affairs…When somebody applies who we feel ill-equipped to cope with, e.g. people who cannot manage their own affairs because of learning disability, mental health problems or brain damage, they are signposted on to more suitable clubs.” (Outsiders Website) The website does not point to these other organizations or reference if they deal as thoroughly with sexuality issues for people with disabilities. Aside from this one point, Outsiders most closely aligns with the vision for Be Frank.
Name: Vita Community Living Services
Location: Ontario, Canada
Structure: NPO, Residential services provider, Employment services and Dayhab, Education, Publish and develop curricula, Professional staff alliance, Policy development, Activist organization
Mission: Vita Community Living Services and Mens Sana Families for Mental Health provide safety, respect and community through services for individuals with intellectual disabilities and/or mental health needs.
Summary:
Vita Community Living Services (CLS) is a care provider in Toronto that provides residential and employment services. It is the home agency of David Hingsberger, a pioneer in the sexuality and ID/DD field. Vita CLS is committed to furthering the inclusion of people with disabilities in the surrounding community by participating in local events, like the Toronto Pride parade. The organization also places an emphasis on education as an important part of furthering acceptance.
According to their current annual report, Vita CLS has participated in many conferences offering presentations to care staff, professionals, and people with disabilities. Staff at Vita CLS are involved in curricula development, academic publication and media publication.
Many of the Vita CLS professional staff are published offers, writing definitive literature on the topics of sexuality social skills focusing on the intellectually and developmentally disabled populations, mostly published through Diverse City Press. These books cover topics from bullying to masturbation to bereavement to interpreting behavior cues.
Vita CLS work as a clearing house for publications and curricula is the model on which the Be Frank Educational Collaborative goal to do the same is based. One of the long range goals of the Collaborative is to develop and distribute curricula that deal specifically with the ID/DD population. Many people within the Sexuality Education Network have already started doing this.
Vita CLS set goals to: “Increase social and educational opportunities for members and
community wait list; Develop weekend day and evening respite and social programs; Continue to offer the Master Series; Outreach to other agencies; and training both internally and to the broader community.” (Annual Report, p. 17). Of the agencies I have reviewed and those I have personally dealt with, Vita CLS has the most active and innovative campaign to better the position of people with disabilities in the greater community.
The “Words Hit Like a Fist” movement aims to remove, or at the least make people more conscious of using casual hate speech.
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From the explanation that is found when one follows the link on the card:
“You are reading this for one of two reasons, you’ve received a ‘words hit’ card from  someone who heard you use ‘the R word’ or someone showed you the card thinking you’d find it ‘cool’. Either way, thanks. The cards were created as part of a worldwide movement to eliminate ‘words that hurt’ from language. Our particular focus is on the word ‘retard’ because of the powerful damage it does to the self-esteem of people with intellectual disabilities. We share with you three facts and five things you can do to help.” (Words Hit website).
These cards are also available for LGBT issues. While it doesn’t specifically address sexuality issues, the cards offer an opportunity to passively open a dialogue with the general public about treating people with disabilities as people, rather than as a larger group of subhuman entities.
Name: Family Life and Sexual Health (F.L.A.S.H.)
Source: Seattle/King County School District
Audience and Focus: Special Education, High school level, Sexual Health Education
Best Tools:
Summary:
The F.L.A.S.H. Curriculum is one of the most comprehensive teaching tools available publicly. Out of the box (or printer) has all of the materials needed to do assessments, communicate with parents, and run the 28 section course. The curriculum addresses the difference between values and philosophy and explains that completely values free education is not desirable. It then gives educators a set of tools to answer questions that may be values based, reinforcing the facts of an answer and either opening the floor for opinions from other students on the values surrounding the topic or deferring to parents and clergy.
The F.L.A.S.H. curriculum uses the “Trusted Adult” method, in which a learner identifies one person in their life, family, staff, or other adult, to be the point person who can be asked difficult questions and bring the learning from class into everyday life. Additionally, F.L.A.S.H. has letters to be sent to the trusted adult at the end of each unit that outline the lesson and give ideas for starting conversations with the learner.
F.L.A.S.H. is a great starting point for developing more specialized lessons. One major fault in the curriculum is its heteronormative treatment of issues like dating, sexual identity, and families. In the larger curriculum, there is not really any discussion of alternative family structures. In the family section, gay and lesbian families are mentioned in an optional documentary. The issue of transgender does is not addressed. In fact, the entire chapter on gender is based around using the correct bathroom (an important skill, but not really helpful for people who have questions about gender identity).
F.L.A.S.H. is the most accessible tool for those looking to teach specialized sexuality education because it is based on teaching methods for special education, is fairly comprehensive, and free through the King County website. The complete inclusion of tools makes it easier to forgive the complete exclusion of non-heterosexual, non-cisgendered people, but only because the language and structure of the lesson plans makes it easy to augment a lesson. It is also worth noting that the F.L.A.S.H. curriculum for typical high school students does have one chapter of LGBT issues that could be adapted for this curriculum.
Name: Sexuality and Disability: A guide for Parents
Source: Alberta Health Services
Audience and Focus: Parents or people with disabilities, tools to teach difficult sexuality topics to children
Best Tools: A guide to defining family values, section on child development, “quick and dirty” guide to talking about puberty
Summary:
This guide is an adjunct to the sexuality education given in the Alberta Public schools, Health and Life Skills (for Grades K-9) and Career and Life Management (High School). It is created especially for parents to continue the conversation about sexuality at home, particularly in the arena of personal beliefs and values—which is a topic better addressed by parents and more familiar staff, as it varies greatly from person to person.
The guide clearly defines the role of parents in sexuality education—“to provide the guidance and knowledge their children need to become safe and happy adults.” It is further expanded to include giving accurate and factual information, honestly answering questions, beginning the conversation about sexuality, sharing family morals, helping make good decisions, and to be supportive of those decisions. (p. 3-4)
The thing that sets this guide apart from others aimed specifically at parents is that, while it is sensitive to differing values and offers an opportunity to discuss them, it provides information that is wholly unbiased. It addresses puberty, masturbation and STIs frankly for both boys and girls, and adds extra information that is specific to each, such as menstrual hygiene and wet dreams. Most importantly, this information is provided in a way that is neutral and doesn’t try to add fear or shame to sexuality.
The only thing I would change about this guide is the use of good and bad touch as a way to identify abusive behaviors. However, unlike many places that use that popular language, the guide goes on to explain that “bad” touches are hurtful, and emphasizes that it is neither ok to get nor to give a hurtful touch. It further delves into the explanation of sexual abuse as a type of hurtful touch using language that expresses differences in power and size and coercion. This section does involve a disclaimer that there are situations and times where the type of touch explained under the sexual hurtful touch may be necessary (e.g. changing a baby’s diaper or during a medical exam). What the section on hurtful sexual touch is missing is the recognition that sometimes hurtful touches physically feel good. Any acknowledgement of sexual abuse should also note that the body’s physical reactions sometimes operate separately from feelings.
Name: Sexuality Education for Children and Adolescents with Developmental Disabilities
Source: Florida Developmental Disabilities Council, Inc.
Audience and Focus: Parents and Caregivers, people with disabilities with minimal knowledge of sexuality
Best Tools: Helpful Hints for Parents, ideas of at home teaching methods.
Summary:
The guide is separated into five topics, each aimed at a different age groups, separated by school year: Alike of different (K-5); Changes in Your Body (4-8) and Becoming and Adult (9-12); Beginning Social Skills (K-8) and Advanced Social Skills (6-12); Dating; Sexual or Physical abuse. The guide also includes a section on tips for the teachers and advice on adapting lessons and teaching styles to accommodate different learning styles.
The guide offers a lot of information that is accurate, but not really in depth or beyond the scope of what can be found on the Planned Parenthood website. Some of the activities also seem exceedingly childish for the age groups they are assigned to. For example, in the Becoming an Adult section, recommended for high school aged learners, there is a self-esteem building activity that asks a series of questions like “If I could choose to be a bird, I would be…(type of bird),” and then asks both, “What are things I like about myself?” and, “What do others like about me?” (p. 30) This is a theme throughout the guide—ham-handed activities that are based at people with profound disabilities or parents who still see their child with a disability as a toddler.
Aside from the issue with the activities, the guide does offer helpful tips on how to handle potential uncomfortable situations like public masturbation and teaching appropriate social distance. It also offers simple, beginner lists like recognizing physical/sexual abuse symptoms and developing house rules surrounding privacy.  Among the things I wish were handled differently in this guide is the use of the language good/bad touch, as it over simplifies the issue and can be problematic when a either category of touch crosses the threshold into the other realm. The guide also allots a half a page to the discussion of “safe sex” most of which are a procedural description of how to apply a condom. There is a very heavy emphasis on abstinence.
The reason I chose to include this curriculum in the study is to contrast the Alberta Health Service basic guide for parents reviewed previously.
Name: Asperger’s Syndrome and Sexuality
Source: Isabelle Hénault
Audience and Focus: Family and Support staff of people with AS, teaching sociosexuality to people with AS who are going or have gone through puberty.
Best Tools: Hygiene Checklist (24), Sample Masturbation Instructions (35-6), Rules for Consent (48), Self-monitoring sheet (72), Risk of STI Transmission list (152)
Summary:
This book is one of the most comprehensive guides to Asperger’s Syndrome (AS) and sexuality. It outlines both the unique problems of people with AS (most of which cross over to the milder forms of Autism Spectrum Disorder) and offers an outline for a twelve week program for teaching sexuality.
A section of the book that stands out among sexuality education curricula is Chapter 4: Sexual Diversity and Gender Identity. Very few sexuality education curricula deal with the issues of sexual preference for learners, and the number that deal with non-binary sexual identities is even fewer. The idea of LGBT people with disabilities is even more taboo than either sexuality in the disabled community or LGBT issues in the typical community. The AS book information on sexual identity and preference can be transferred to larger community.
This book and the F.L.A.S.H. curriculum are the most user friendly, comprehensive guides for professional interested in ongoing education. There two things I would change about the AS and Sexuality program. The first is the way the activities are presented—without much explanation for the teacher. Many of them are self-explanatory, but a few give the tool with only the instruction to discuss. Teachers using this guide could benefit from a little more help, like conversation starters or topics. This program, unlike others, is a basic outline with activities recommended from other curricula. This is not necessarily detrimental, but for people who are not in the field of disability services or sexuality education, it could be difficult to find these other activities.
The second thing I would change is the order of some of the topics in the program. Notably, the section on Emotions (inability to identify emotional cues is a marker of AS) come two sessions after “Love and Friendship,” finding itself sandwiched between sexual behavior and STIs. There may be a diagnosis based reason for the order, but it seems like a distracting change up in the momentum of the program.
Sources
Alberta Health Services. (2009). Sexuality and Disability: A Guide for Parents. Alberta, CA: Alberta Health Service.
Brunnberg, E. (2009). Sexuality of 15/16-Year-Old Girls and Boys With or Without Modest Disabilities. Sexuality and Disability, 139-153.
Canfield, E. excerpted from Planned Parenthood of Indiana. http://www.ppin.org/sex-and-swimming.aspx. Accessed 11/20/11
Davies, D. (2000). Sex and Relationship Facilitation Project for People with Disabilities. Sexuality and Disability, 187-194.
Disabled Persons Protection Commission. (2011). Prevalence of Violence. Accessed 10/15/11: http://www.mass.gov/dppc/abuse-recognize/prevalence-of-violence.html.
Florida Developmental Disabilities Council, Inc. . (2005). Sexuality Education for Children and Adolescents with Developmental Disabilities. Tallahassee, FL: Florida Developmental Disabilities Council, Inc. .
Hénault, I. (2005). Asperger's Syndrome and Sexuality. Jessica Kingsley Pub.
National Center for Domestic and Sexual Violence. (n.d.). Sexual Assault Statistics. Accessed 10/15/11: http://www.ncdsv.org/images/SexualAssaultStatistics.pdf.
Outsiders. (2010). Annual Report, 2009-2010. London, UK. http://www.outsiders.org.uk/files/AnnualReports/2009_2010/Annual%20Report%202009-2010.pdf. Accessed 12/2/11
http://www.outsiders.org.uk
Seattle and King County. (2011). Family Life and Sexual Health. Seattle, WA: Seattle and King County School District. http://www.kingcounty.gov/healthservices/health/personal/famplan/educators/flash.aspx. Accessed 9/14/11
Trenholm, C., Devaney, B., & Fortson, K. (2007). Impacts of Four Title V, Section 510 Abstinence Education Programs Final Report. Princeton, NJ: MathematicaPolicy Research Inc.
Vita Community Living Services. (2011). Annual Report. Toronto, Ontario, CA: VitaCLS. http://vitacls.org/vita/pdf/AnnualReport2010-2011.pdf. Accessed 11/25/11.
Wisconsin Caregiver Abuse and Neglect Prevention Project. (2008). Sexual Assault Statiscs for Older Adults and People with Disabilities. Oshkosh, WI: University of Wisconsin, Oshkosh.
Employee quantity obtained from MA State Payroll Information: http://www.masslive.com/database/statepayroll/?appSession=272543102601067&RecordID=&PageID=2&PrevPageID=2&cpipage=1&CPIsortType=asc&CPIorderby=Annual_Rate . Accessed 11/15/11.
Quality & Risk Management Brief, Issue#4: Supporting Healthy Sexuality. May 2011. Retrieved from: http://www.mass.gov/eohhs/docs/dmr/qa-qina-brief-healthy-sexuality.pdf. Accessed 10/26.11
Appendix A
Slideshow explaining ways to combat the systemic problems in Sexuality and Disability Services.
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Appendix B: Strategic Plan for the Be Frank Educational Collaborative
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Offer comprehensive sexuality and social skills education that is sensitive to both values and experience as well as accessible to teens and adults with intellectual and developmental disabilities.
  • Have an intake process that gathers information on cultural and religious background.
    • Perform an interview and assessment during the enrollment process.
      • The assessment is meant to determine knowledge level, collective language, abilities, and any potential roadblocks the facilitators may encounter in lesson planning, such as a history of abuse, special accommodations that need to be made in teaching style and any other useful information to aid in providing the best classes possible.
  • Create new lessons and curricula based on the needs and wants of the class participants.
    • Use feedback from Participants to inform lesson plans and future classes.
      • While it may not be a big part of the initial series, these assessments by participants will be a useful evaluation tool for planning, creating new lessons and increasing accessibility and interest for each class.
      • Feedback will also be sought from trusted people and other key support professionals to help determine the effectiveness of lessons and their practicality.
  • Adapt current curricula to meet the varying needs of class participants.
    • Examine the specific needs of each class before the initial session and be tweak the lesson plans to better fit the learners'’ needs. Continue to be flexible throughout the series.
      • Different diagnoses and abilities require different teaching techniques. For example, in a group setting, if a learner cannot read, there need to be alternative methods of communicating the information or if a learner has ASD, they may require extremely concrete and method based lessons.
      • Another consideration in the flexibility of each class is the history of the Learners. In the disabled population, there is a ~90% likelihood that an individual has encountered abuse. In this light, it is important that facilitators are prepared to accommodate this potential sensitivity. Ideally, some indication of this will be uncovered during the assessment process.
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Work towards a proactive approach to sexuality education that aids in abuse prevention and encourages the support of whole lives for people with ID/DD.
  • Use the “Trusted Person Who Can Help” model to encourage a supportive connection between learners and members of their support systems.
    • Begin each series with the “Trusted Person Who Can Help” Training created by M. Goodwin and R. Barry.
      • To establish a person outside of the classroom who is chosen by the learner and can be relied on to offer continuing support.
    • Offer support and training for identified “trusted people.”
      • To create a bridge between “trusted people” and the Collaborative to reinforce Educators as resources for difficult questions and advice.
  • Connect to agencies and families, increasing awareness about education opportunities and encouraging participation in skill building.
    • Run a promotional campaign to make the Collaborative a known resource for Sexuality and Social Skills education.
      • Generally, the response to the idea of this service is that people would use it, if they were aware of its availability.
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Provide information to support professionals and families to help integrate lessons into everyday life.
  • Invite support staff and families to information sessions at the beginning of each series.
    • The coordinator will host an informational session for any involved parties at the location before the start of the first class
      • This will allow any nervous or skeptical family and staff members to voice their concerns and receive more information about the classes. This can also be used as a time to establish “session rules,” regarding confidentiality, respect, the established safe spaces, and that if anyone is uncomfortable during the lesson, they can leave the room and speak with a facilitator or coordinator if they desire. Hopefully these guidelines will assuage some of the worry on the part of the supporters.
      • It is also important to stress that all information will be considered confidential unless it tells about harm to the learner or caused by the learner. Most of the Educators fall under the purview of the mandated reporter guidelines lain out by the Massachusetts Disabled Persons Protection Commission.
      • This will also serve as a time to give a brief overview of the “trusted Person” concept and let supporters know that summaries will be provided.
  • Provide written materials keeping the identified trusted person abreast of classwork and potential opportunities for continuing education at home.
    • As a requirement of co-facilitating a class, educators will provide these summary sheets prior to the coordinator for distribution.
      • The point of providing information to primarily the trusted person is to offer transparency in lesson plans, while still maintaining the established confidentiality and so that those people may offer a bridge to practicing the lessons in daily life.
  • Be accessible to family members to answer questions and offer guidance as issues arise.
    • The coordinator will be accessible during regular hours to offer guidance, information, and resources to questioning parties.
      • This way, when the “trusted person” or other support staff encounter a problematic or confusing question of situation, someone will be regularly available to guide them through the situation, offer information, or connect them with an educator for further consultation.
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Facilitate 1-1 teaching by providing referral and marketing services connecting educators and learners.
  • Create an informational database of educator qualifications tracking; contact information, special areas of expertise, accommodating skills (like ASL), available hours, and desired education setting.
    • Create a registration survey for educators to be completed as they enter the Collaborative.
    • Make notes of the accommodations required by learners to better pair them with an educator.
      • The reason behind the database is to automate as much of the pairing work that needs to be done between educators and learners, to provide easier reporting for auditing purposes, and to track attendance and other relevant information for future directed promotion and follow-up.
  • Distribute promotional information to appropriate agencies to make them aware that such a service exists.
    • Create a pamphlet, website, and email services to alert agencies and families of new opportunities for learners.
      • The DDS based service agencies are notoriously low-tech. It is important to be able to reach people through all of the necessary venues, while still maintaining enough focus to be consistent across all platforms.
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To be publicly and equally accessible to families, agencies and people with disabilities seeking knowledge and skills.
  • Create a classroom space that accommodates large classes, small groups, and 1-to-1 lessons and use teaching methods and curricula that cater to the Learners’ strengths and abilities while remaining separate from the traditional venues for education the learner may be accustomed to.
    • Operating independently of any care agency.
      • One of the driving factors behind the Be Frank Educational Collaborative is the desire to work beyond the strictures of agencies and to be free to create new learning tools without surrendering the one’s intellectual property to a care agency.
    • Developing curricula as a team for the Collaborative, and offering those curricula openly online.
      • This is based on the model used by the Seattle and King County, Washington school system which has created a comprehensive set of health education tools that are available for download, free through their website, or can be ordered bound and with assorted teaching aids, such as transparencies, for a fee.
  • Secure funding through personal donations and grants so that classes will be offered for minimal fees.
    • Partner with a fiscal agent 501(c)3 organization through which to receive funds until such a time as the Collaborative is awarded Not-for-Profit status.
      • “The setting up of an independent nonprofit is time-consuming and legalistic.”—Craig Dreezen.
        • The purpose of partnership is two-fold, to acquire funds to begin the Collaborative while allowing the board to take its time in creating the charter documents for the Nonprofit.
        • The second reason is to work within an incubation setting where the fiscal partner offers advice to fledgling organizations that have an aligned mission.
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